NOTE: UNEDITED DOCUMENT
UNITED STATES OF AMERICA
PRESIDENTIAL ADVISORY COMMITTEE
ON GULF WAR VETERANS' ILLNESSES
PUBLIC MEETING
February 27, 1996
1
* * * * * * *
CLINICAL SYNDROMES PANEL MEETING
* * * * *
Sheraton Gunter Hotel
205 East Houston Street
San Antonio, Texas
APPEARANCES:
Advisory Board Members Present:
Joyce C. Lashof, M.D., Committee Chair
Kelley Brix
Joseph Cassells
Holly Gwin
Thomas McDaniels
Philip J. Landrigan, M.D.
Elaine L. Larson, R.N., Ph.D.
Major Marguerite Knox, R.N.C., M.N., C.C.R.N.
Rolando Rios
Andrea Kidd Taylor, Dr.P.H.
2
APPEARANCES (CONTINUED):
Public Presenters:
Sgt. Robert Casarez
Joey Laske
Kathy Hughes
Capt. Victoria Kilcawley
Victor Sylvester
Sally Medley
Shannah Clark
Ronald Matthews
Dr. Lawrence Plumlee
Wendy Wendler
Antonio Melchor
Sgt. Paul Lyons
Betty Zuspann
Charles Townsend
Joyce Riley
Joanne Rigdon
Sandy Gragg
Medical Presenters:
Dr. Claudia Miller
Dr. Nelson Gantz
Dr. Daniel Clauw
Dr. Edward Hyman
Dr. Garth Nicholson
2
1 P R O C E E D I N G S
2 DR. LANDRIGAN: Good morning. My name is Dr.
3 Philip Landrigan. I am a medical doctor and chairman of
4 the Department of Community Medicine at Mt. Sinai Medical
5 School in New York City. I am a member of this panel and
6 I am pleased to call the meeting to order this morning.
7 The purpose of this meeting is to take public
8 commentary on the issues that surround the illnesses of
9 the Gulf War Veterans. We are going to hear this morning
10 from a series of members of the public. And may I ask any
11 member of the public who is on the witness list who hasn't
12 yet signed in, please do so because there is a half-dozen
13 who have not yet done so. Let us know that you are here
14 so that you will get your slot.
15 And then this afternoon, we are going to hear
16 from a number of scientists who have done research on
17 various aspects of the Gulf War Veterans. What I would
18 like to do at this point to get us started is to have the
19 members of the panel introduce themselves to you. Start
20 with our Chair, Dr. Lashof, and then everybody else.
21 Just introduce yourself, please.
22 DR. LASHOF: I am Dr. Joyce Lashof. I am chair
3
1 of the Presidential Advisory Committee and I am anxious to
2 here the presentations today.
3 MAJOR KNOX: I am Marguerite Knox. I am from
4 Columbia, South Carolina and I was a veteran in Desert
5 Storm and was stationed at King Kahlad military city with
6 the Army Nurse Corps.
7 MS. GWIN: I am Holly Gwin. I am a member of
8 the Advisory Committee staff.
9 DR. LANDRIGAN: I don't think these mikes are
10 working properly or at least not all of them, if somebody
11 will check. Good morning. And now it is my pleasure to
12 introduce Mr. Rolando Rios, who is a member of this
13 commission and a son of San Antonio.
14 MR. RIOS: Thank you. I am Rolando Rios. I am
15 a veteran of the Vietnam War and a member of this
16 committee. Thank you for being here.
17 DR. LARSON: Good morning. My name is Elaine
18 Larson. I am a nurse from Georgetown University.
19 DR. TAYLOR: Good morning. I am Dr. Andrea
20 Kidd Taylor. I am an industrial hygienist with the United
21 Auto Workers' Health and Safety Department.
22 MR. CASSELLS: I am Joe Cassells. I am a
4
1 clinical consultant to the Advisory Committee.
2 DR. BRIX: I am Kelley Brix and I am an
3 epidemiologist and I staff for the committee.
4 MR. MCDANIELS: I am Tom McDaniels. I am
5 committee staff.
6 DR. LANDRIGAN: Okay. Well, thank you all.
7 And thank you, all the members of the public who are here.
8 Now I will just proceed. Let's see. Members will come to
9 the podium here for their testimony. And our first
10 presenter this morning is Mr. Robert Casarez. Mr.
11 Casarez, please come forward.
12 Before Mr. Casarez begins, could I remind all
13 the public witnesses that we have a very full schedule
14 this morning. The -- each speaker is limited to about
15 five minutes. I know this is too brief. I know that your
16 concerns are profound. We are not cutting it short to
17 show any disrespect to you but in order to give every
18 person a chance to express their testimony, we need to
19 stay to schedule.
20 So please respect that. And Mr. McDaniels will
21 hold up this yellow ticket when you get down to the last
22 60 seconds. Thanks.
5
1 SGT. CASAREZ: Good morning. My name is Robert
2 Casarez -- Staff Sgt. Robert Casarez. I have spent 20
3 years in the U.S. Army. I served with General Franks, 7
4 Corps Headquarters, during the Gulf War. I served two
5 six-month tours in Saudi Arabia.
6 As a result of the service to my country, I now
7 suffer from chemical sensitivity, painful joints, rash,
8 sores, diarrhea, eye sensitivity, memory loss -- memory
9 loss, bone and joint pain, and extreme fatigue and many
10 others. Some of my symptoms started after a SCUD attack
11 that we had in our area.
12 At that time, most of the personnel in my unit
13 broke out with diarrhea and I enquired about it through my
14 chain of command. Actually, we all did. The comment that
15 was given to us was that the reason that we were catching
16 diarrhea was because of the lettuce and tomatoes that we
17 were eating. Our supply source -- food source came from
18 about a block away from where the SCUD hit.
19 Since my return from the Gulf War, trying to
20 get health care for my chemical sensitivity from civilian
21 doctors that I pay myself has not been a problem. Trying
22 to get health care from DOD -- Department of Defense -- or
6
1 the VA is almost impossible. I have been waiting for
2 health care since my return from the Gulf.
3 I have been told on numerous occasions if I
4 will take psych care, I will have all the care that I can
5 get. Care for my diagnosed medical problems -- I can
6 forget that. I will spare you with the details of
7 falsification of my medical records and the nightmare I
8 have gone through during my active duty service for coming
9 forward to try and to get the active duty -- trying to get
10 on the -- correction -- to try to get on the active duty
11 Gulf registry. I can tell you that doesn't work too
12 easily.
13 My Walter Reed stay in 1992 started with the
14 doctors trying to convince me that I was the only person
15 there at the time when there were six other personnel that
16 were kept on the fifth floor. When I persisted, I was
17 asked, Sergeant, do you want a medical discharge? And I
18 said, Excuse me, ma'am -- which I was assigned two
19 doctors, a captain and a major.
20 I said, Excuse me, ma'am. How can you offer a
21 medical discharge when you guys are telling me every day
22 that there is nothing wrong with me?
7
1 Then I was told, Sergeant, if you will stop
2 mentioning that there is a Gulf War problem, you will get
3 better care than what you would saying there is a Gulf War
4 problem.
5 My stay went downhill from there. Two years
6 later after being transferred to Fort Hood, Texas, I was
7 sent to San Antonio for the Persian Gulf Evaluation. The
8 Army doctors there recommended that I be medically
9 discharged.
10 Fort Hood, where I was stationed, would not
11 hear of such thing. They refused to medically discharge
12 me. They mentioned to me that I am getting 50 percent,
13 you know, what more did I want. What I wanted was medical
14 care. I felt the reason was I had been trying to get Fort
15 Hood to give me medical care to myself and six soldiers in
16 my unit and the soldiers there at Fort Hood, which we were
17 all having a very difficult time trying to get this
18 medical care.
19 DR. LANDRIGAN: One minute, Mr. Casarez.
20 SGT. CASAREZ: Okay. The VA sent me to Houston
21 VA. All they ever seemed to want to do there was send out
22 the psychiatry personnel around. I wanted to see medical
8
1 doctors. I needed care for my chemical sensitivity, my
2 heart, liver problems, plus other symptoms.
3 Throughout my stay there, the Houston VA --
4 they did not want to discuss my medical problems. I
5 instead -- I insisted they help me. One of the social
6 workers there mentioned, Sergeant, if you are unhappy
7 here, you can stop at any time. We have had at least 25
8 people stop the program and move on to something -- go
9 back home.
10 DR. LANDRIGAN: Maybe that is a good point to
11 ask the panel if they have any questions of you. Thank
12 you for telling your story.
13 SGT. CASAREZ: Okay, sir. Sir, one thing I
14 would like to mention there at the end is that I have had
15 help from Dr. Rey, Environmental Health Center in Dallas,
16 Dr. McGail, and Dr. Langston. I appreciate their help. I
17 don't think I would be where I am today if it wasn't for
18 their help.
19 Do I have any questions at this time?
20 DR. LANDRIGAN: Thank you very much. Members
21 of the panel?
22 DR. TAYLOR: You mentioned that you do have
9
1 help from an environmental health physician. Are they --
2 and you have been diagnosed with multiple chemical
3 sensitivity?
4 SGT. CASAREZ: Yes, ma'am. By Dr. Rey and also
5 seeing Dr. Claudia Miller at the Houston VA.
6 DR. TAYLOR: So are you sensitive to chemicals?
7 Are there any specific chemicals that you are sensitive to
8 now?
9 SGT. CASAREZ: Yes, ma'am. Any time I smell
10 hairsprays, paint, fingernail polish -- it just starts to
11 tick off the problems within my body. Yes, ma'am.
12 DR. LARSON: Sir, what is your current status?
13 SGT. CASAREZ: Right now, I am at home, ma'am.
14 I am not working or -- I did retire.
15 DR. LARSON: Could you just briefly explain
16 what you meant by falsification of medical records?
17 SGT. CASAREZ: Yes, ma'am. Ma'am, there is
18 a -- things in there that would be -- that would not be
19 mentioned in the records. I will give a -- for instance,
20 at Wilford Hall, there were some things that -- I hate to
21 go into detail here -- that some tests that we were taking
22 and that were not mentioned in our records or some things
10
1 that I felt that was put into our records that should not
2 have been.
3 I will give a for instance for psych at Wilford
4 Hall. Once I seen the psych there, he just went down a
5 little book there and said, Sergeant, have you been
6 diagnosed yet? And I said, No, sir. I haven't.
7 Well, this seems like a good one. Submit a
8 form, he said. So I guess that is my meaning there,
9 ma'am.
10 DR. LARSON: Okay. Thank you.
11 MR. RIOS: Mr. Casarez, I met you at the VA
12 Hospital in Houston. Do you recall?
13 SGT. CASAREZ: Yes, sir.
14 MR. RIOS: How long were you there at the
15 hospital? You were there for observation. How long were
16 you there?
17 SGT. CASAREZ: Two weeks, sir.
18 MR. RIOS: Are you still under their care?
19 SGT. CASAREZ: No, sir. I was sent back with
20 my little written diagnosis and that was it, sir. They
21 did not say that they were going to request for me to come
22 back or not.
11
1 MR. RIOS: Is Dr. Miller still -- are you still
2 under Dr. Miller's care?
3 SGT. CASAREZ: No, sir.
4 MR. RIOS: If I recall -- let me ask you just a
5 general question. When you started reporting your
6 symptoms to DOD and the VA, this started probably several
7 years ago. Is that correct?
8 SGT. CASAREZ: Yes, sir.
9 MR. RIOS: Have you noticed any difference in
10 attitude or in trying to take your symptoms more seriously
11 over the past several years? Has it changed in any way?
12 SGT. CASAREZ: From Walter Reed, yes, sir, it
13 has a little bit. I still say they are -- the biggest
14 comment I always make, sir, is the doctors are always
15 telling me that, Our hands are tied. Until someone
16 releases our hands, then we can give you guys better care.
17 It got better from Walter Reed to Fort Sam and
18 to Wilford Hall. But the thing that lacks is that
19 protocol -- the listing that they give us of things they
20 examine us for, not all of us get examined for the same
21 thing. Just if you happen to complain about it, that is
22 what they are going to look at.
12
1 Same with the VA -- with Houston. If you don't
2 mention chemical sensitivity, you don't get looked at.
3 You may have that problem, but the doctors aren't going to
4 say, Dr. Miller, we need you to come down and check these
5 other two individuals out.
6 I was the only one that brought it up so I was
7 the only one they looked at.
8 MR. RIOS: Okay, Mr. Casarez. Thank you very
9 much.
10 SGT. CASAREZ: Thank you, sir.
11 DR. LANDRIGAN: Now our next witness this
12 morning is Mr. Joey Laske.
13 MR. LASKE: I would first like to thank the
14 committee for allowing me to come in here and speak.
15 VOICE: Can you speak up just a little bit?
16 MR. LASKE: I would like to thank the committee
17 for allowing me to come in here and speak. Also my
18 counselor Sheba Giote who used to be the Desert Storm
19 coordinator in this area for the Persian Gulf exams. If
20 it weren't for her, I wouldn't know this meeting was
21 taking place.
22 I guess I am going to have to begin by giving
13
1 you a summary of my medical history. Before the Persian
2 Gulf, I had 13 doctor's visits and follow-ups due to
3 training injuries and allergies. Since my return from the
4 Persian Gulf, I have had 51 appointments while on active
5 duty. And as of yesterday, I completed my 230th doctor's
6 visit, appointment, or ER visit since April of 1994.
7 After my discharge, which was followed up by a
8 new command that I was moved to after return from the
9 Persian Gulf, they said my symptoms were in my head, that
10 I was bringing this on myself. They kicked me out of the
11 military. I am currently fighting with St. Louis to
12 change my discharge over to medical retirement.
13 Since my return, I have had 32 occurrences of
14 bronchitis, shortness of breath, and bronchial spasms
15 which have led me to the ER. Thank God for San Antonio's
16 VA Hospital, because they know me by name. When I go in
17 there, I get immediate care.
18 After all of these occurrences of bronchitis,
19 the VA doctor suspected tuberculosis. When they tested me
20 for that, they also did an immunity suppression test to
21 test for skin anergy. They did this test three times. I
22 showed no response from my immune system.
14
1 The doctor reading the results told me he had
2 only seen this condition in full-blows AIDS patients. He
3 left the room. He did not return. He has never seen me
4 since. They sent in a social worker and another doctor to
5 get me to sign paperwork in order to test me for HIV.
6 After the eight tests I have gone through for
7 HIV with negative results, I still cannot get that
8 positive statement out of my disability paperwork. After
9 they ruled out the HIV, they tested me for lupus,
10 leukemia, cancer, brain tumors. When they found no
11 explanation, they related it to stress and they said it
12 was in my head.
13 As a result of that statement, I spent two and
14 a half years under psychiatric evaluation. I have had to
15 threaten to go to my congressman to get a vehicle sticker
16 so that I can get on Lackland to get to my appointment at
17 Wilford Hall.
18 One of our biggest problems faced by the
19 Persian Gulf veterans is there is no general health
20 coordinators at our VA Hospitals that can coordinate and
21 review all of our exams and records. From the specialist
22 we have been sent to, there is not a clinic set up to come
15
1 up with a treatment strategy. The veteran ends up seeing
2 specialist after specialist, getting placed on medication
3 after medication, after leading -- often leading to other
4 side effects.
5 I brought with me my medications that I am
6 currently on. After going through all the specialists and
7 after years of trying to get the doctors to listen to us,
8 the veteran still must send his claims to a regional
9 office that you have stipulated as Nashville. Those of us
10 in Texas, ours go to Houston, forwarded to Nashville.
11 I have had claims in since '94 -- since last
12 summer -- and each diagnosis I send in a new claim. The
13 board makes the decision without even seeing the patient.
14 The problem is, we can't support ourselves. I haven't
15 worked since October of 1994, where the employment agency
16 I was working for said, You can either go to your doctor's
17 appointment or you can go to work.
18 That is not a choice. If we can't afford to
19 support ourselves, do you think we can afford to go to
20 Nashville to be seen by the board in yet another
21 appointment?
22 I can't begin to describe the degradation and
16
1 humiliation we have suffered from this disease. We were
2 once motivated and productive individuals but now we are
3 forced to accept drastic changes in lifestyles and
4 activities. I used to be a training NCO for my unit and I
5 ran five miles a day. Now I feel fortunate when I am able
6 to walk by dog without losing my breath.
7 There isn't a day that goes by that I don't
8 wake up, live through the day, and go to bed in pain.
9 This pain has often caused us to be bedridden. I have
10 been diagnosed with chronic fatigue and fibromyalgia. I
11 spend approximately 16 to 18 hours a day sleeping and
12 spend most of my weekend in bed. Where I used to go
13 hiking and bicycling, horseback riding and swimming, I now
14 look forward to going to a movie or lunch with friends.
15 I stayed in San Antonio, not my home of
16 Michigan, because I needed to be here with a major VA
17 facility. Although my family wishes for me to move home,
18 the thought of switching to another VA facility and having
19 to go through this process all over again is too
20 frightening. We are no longer able to support ourselves
21 and are forced to rely upon friends and relatives to
22 support us.
17
1 Although it is not easy for married veterans to
2 make ends meet, I ask you to imagine what it is like for a
3 single veteran. As I said, I haven't worked since October
4 30 of 1994, when they gave me that wonderful option.
5 After losing my job and career, my hobbies and activities,
6 why should we lose our credit? It is humiliating to go to
7 a job interview, get all the way to the medical screening
8 and have them tell you to get your health in order and,
9 Come back and see us.
10 The other problem we face is that there is no
11 diagnosis. Doctors can't agree and our research groups
12 aren't communicating with each other. Worst of all, our
13 government won't even acknowledge the possibilities of
14 troops traveling through chemical areas and they won't
15 discuss the use of unapproved inoculations and
16 pyridostigmine bromide tablets we took that were supposed
17 to protect us from chemical agents.
18 What about the diesel that we lived on that our
19 generals dumped on to keep the dust down? What about the
20 chemical suits that we spent 80 days in with charcoal
21 being absorbed into our bodies? All these effects have
22 ruined our lives. I ask you, as the committee, to get our
18
1 government agencies speaking together.
2 Currently, the Social Security Administration
3 does not recognize the Gulf War Syndrome. They look at
4 your symptoms. Their response to me was, We are treating
5 your symptoms. You can work. They said that I did not
6 qualify for disability benefits under their rules. If I
7 qualify under the VA rules, why don't I qualify under
8 Social Security? Thank you.
9 DR. LANDRIGAN: Thank you very much, Mr. Laske.
10 Questions from the panel?
11 DR. LASHOF: When did your symptoms first
12 start?
13 MR. LASKE: About six months returning from the
14 Gulf. I got sick in the Persian Gulf and they tried to
15 treat it over there. When I got back from the Persian
16 Gulf, I had an intestinal disorder that caused them to do
17 scopes. When they couldn't find anything, they just told
18 me this was something I would have to live with.
19 MR. CASSELLS: What is your current status as
20 well in regards to your military status? Are you
21 medically retired? Were you released from the active
22 support --
19
1 MR. LASKE: I was not allowed to re-enlist.
2 They said that I brought on these symptoms myself so they
3 flagged me so that I could no re-enlist. When they found
4 out I would get benefits upon being kicked out, they
5 cancelled all the paperwork after my window of opportunity
6 closed for re-enlistment.
7 I am currently fighting that decision through
8 St. Louis and have been since April of '94.
9 MR. CASSELLS: So you were released from active
10 service and not allowed to re-enlist?
11 MR. LASKE: I was released.
12 MR. CASSELLS: Thank you.
13 DR. LANDRIGAN: Thank you very much, Mr. Laske.
14 Appreciate your coming here. Now our next speaker is Ms.
15 Kathy Hughes. As Ms. Hughes comes to the podium, could I
16 remind any designated speakers who haven't yet signed up
17 to please do so.
18 MS. HUGHES: I want to thank the committee for
19 being here this morning. My husband is the veteran and I
20 would like for him to speak first and then I would like to
21 address the committee.
22 MR. HUGHES: Thank you very much for your time.
20
1 My name is Harold Hughes. I am retired United States Air
2 Force. I was active duty Air Force a little over 20
3 years. I served in the Persian Gulf from the 30th of
4 October of 1990 until the 4th of May of 1991.
5 Approximately about six months after my return
6 from the Gulf, I first began experiencing my first
7 problems that as time went on, you know, it progressed. I
8 have sore joints. I have night sweats that I suffer from,
9 unexplained fevers, short-term memory loss where I can be
10 in the middle of a conversation and just completely lose
11 track of what I was talking about, mood swings,
12 depression, sleep apnea.
13 I have -- I also have problems with reflux in
14 the middle of the night I used to didn't have, gastric
15 problems, unexplained diarrhea, anxiety attacks. I wanted
16 to make one comment that was one thing that was of concern
17 to me, is in my time in the Gulf, I was put back at times
18 with certain instructions and certain orders that we were
19 given that seemed like it was not exactly very good
20 protocol at the time.
21 We were told to take inoculations that were not
22 really explained very thoroughly to us under the threat of
21
1 disciplinary action. We were told to take pills that were
2 not fully explained to us under the threat of disciplinary
3 action. I was stationed myself at King Fahd International
4 Airport, Saudi Arabia. And within a week after the air
5 war began to -- within a week after the air war began, we
6 were instructed it was no longer necessary for us to wear
7 our chem suits and we should go to the King Fahd option,
8 as they called it, which we -- all we had to do was just
9 wear our mask and our gloves and our hood and completely
10 disregarding wearing chem suits any more. And this was
11 done by general order.
12 And I can't help but feel that maybe if some
13 other precaution was taken -- maybe there are others -- a
14 lot of people out there that wouldn't be as sick as they
15 are. And that is about all I have to say. Thank you.
16 DR. LANDRIGAN: Thank you very much.
17 MS. HUGHES: When my husband returned five
18 years ago, he wasn't the same man. I have known him for
19 21 years. I have always known him to be healthy, had a
20 glow of health, glow of life. I watch him move now. It
21 is like watching an old man.
22 I began documenting his symptoms about four
22
1 years ago and I have filled up four of these with
2 incidents of not only his but hundreds of other people who
3 have called me because I have decided to take a pro-active
4 stand and become involved and find out why were so many
5 people from so many age ranges having the same symptoms
6 when they kept telling him it was his age, at first.
7 I thought, Why? He is not that old. He was
8 only 39 when he retired from the military. And I talked
9 to people in their 20s. They had the same symptoms. I
10 talked to people in their 30s. They had the same
11 symptoms. I talked to people in their 50s and I have even
12 talked to a couple close to 60. They all have the
13 symptoms. They were all there, different times. Some not
14 as long. Some were as long.
15 We have been told tests weren't warranted until
16 recently. Some of the tests have been done after two
17 years of asking for some of them. There was an incident
18 at a military hospital where a doctor made a comment on
19 the Persian Gulf ward that he needed a bed for a patient
20 with a real disease, not like those ones up there.
21 I filed a complaint with the inspector general
22 and that doctor apologized to all of the Persian Gulf
23
1 veterans that were on that ward. He made a public comment
2 he said he was sorry for. He didn't mean it. We wonder
3 as a group of veterans and wives and spouses -- family
4 members who are concerned -- how many other doctors are
5 prejudiced with ideas like this? And then they turn
6 around and say, No, I don't really mean it.
7 I am the daughter of a veteran who died in a VA
8 hospital. I don't want to see my husband die in one. I
9 appreciate you all's help very, very much. Thank you for
10 your time.
11 DR. LANDRIGAN: Thank you, ma'am. If -- Mr.
12 and Mrs. Hughes, if -- I think one or two of the panel
13 have questions for you if you are able to take them.
14 DR. TAYLOR: Mr. Hughes, are you receiving
15 medical treatment currently?
16 MR. HUGHES: Yes, ma'am. I get medical
17 treatment at Wilford Hall Medical Center, at Brooke Army
18 Medical Center, and also at Audie L. Murphy Veterans'
19 Hospital.
20 DR. TAYLOR: And have you been given a
21 diagnosis?
22 MR. HUGHES: No, ma'am. I have never been
24
1 given a definite diagnosis for any of my ailments except
2 the sleep apnea.
3 DR. TAYLOR: Okay.
4 DR. LASHOF: Are you on medication now?
5 MR. HUGHES: Yes, ma'am. I am on several
6 medications from antidepressants to pain relievers for my
7 joint aches and pains.
8 DR. LARSON: Mr. Hughes, what do you think is
9 the cause of your problem?
10 MR. HUGHES: Excuse me?
11 DR. LARSON: What do you think is the cause of
12 your problem specifically. You mentioned some things.
13 DR. TAYLOR: Were there some exposures?
14 MR. HUGHES: Yes, ma'am. I was in an area that
15 was -- there were so many things in the air and around --
16 fires burning, haze in the air from fires burning not only
17 from -- you know, from the area of action but also from
18 fires that we had to burn -- there at the very last, what
19 leftover supplies we had. I was in a detail that burned
20 all kinds of leftover residue in open pits.
21 I also had to make a couple of trips into
22 Kuwait City, you know, myself. And there was all kind of
25
1 things in the air. Soot got all over us and everything.
2 And the shots and the pills. I might add at that anthrax
3 shot was probably the most painful inoculation I have ever
4 taken in my life.
5 MR. RIOS: You mentioned that, on that
6 inoculation, that you were ordered to take it under the
7 threat of disciplinary action. Could you explain that a
8 little bit?
9 MR. HUGHES: Yes, sir. It is very simple. We
10 were given a general order at the time that all personnel
11 were to take this anthrax series. We were even required
12 to sign a statement at the time which, once I signed, I
13 never saw again. And Lord only knows where that it went
14 to.
15 At the time, I was assigned with the 31st Air
16 Transportable Hospital that was out of Homestead Air Force
17 Base, Florida. Whether this -- these statements that we
18 had to sign at the time went back with them or whatever, I
19 do not know since Homestead no longer exists as a base any
20 more.
21 But it was given as a general order as well as
22 taking the P tabs with the threat of disciplinary action
26
1 if we did not adhere to it.
2 MS. HUGHES: I would like to add something
3 about the anthrax shot. He came back in May and he had a
4 lump on his arm from the second anthrax shot that did not
5 go away until August. One morning he was taking a shower.
6 He rubbed a bar of soap over it and it burst inside. And
7 ever since then, he has had joint pains.
8 DR. LANDRIGAN: Thank you again, very much, for
9 coming. The next witness is Ms. Victoria Kilcawley. Yes,
10 ma'am. Please come forward.
11 CAPT. KILCAWLEY: Hello, Committee. I am
12 Captain Victoria Kilcawley, United States Army Nurse
13 Corps. During the Persian Gulf, I was assigned to the
14 251st Army National Guard Hospital stationed in King
15 Kahlad Military City Hafir Abh� [phonetic] in Saudi
16 Arabia.
17 During this time we provided care to infants,
18 children, adults, Bedouins -- any type of person that was
19 suffering from direct or indirect battle injuries.
20 Infants with their faces blown off, children with, you
21 know, abdominal injuries -- all kinds of injuries.
22 Redeployment from Saudi Arabia brought with it
27
1 a whole 'nother avenue. I was back in my job about six
2 weeks when I realized that I really felt the need to serve
3 my country. So I enlisted on active duty. In January of
4 1992, I applied and was selected for active duty and my
5 first duty station was El Paso, Texas.
6 El Paso, Texas, is an arid area that reminded
7 me a lot of Saudi Arabia. Being there, I was the head
8 nurse of the trauma intensive care and the surgical
9 intensive care unit, which brought with -- a lot of
10 memories and a sleep disorder. At the same time, I
11 developed subacute thyroiditis for three months in a row
12 on day three of my menstrual cycle.
13 And you are saying, Well, okay. But my husband
14 and I are trying to have a child. So it was of concern to
15 me, why would I be developing these symptoms on day three
16 of my menstrual cycle. I have yet to become pregnant but
17 there is other underlying factors also.
18 I sought information from the infectious
19 disease person at William Beaumont Army Medical Center and
20 was encouraged to contact the Persian Gulf hotline, which
21 I did. The evaluation began on February 14, 1994 and it
22 consisted of the routine blood tests, EKG, chest x-rays
28
1 and everything.
2 But the psychological battery of tests that
3 they gave me proved that -- well, proved or implied,
4 inferred, that I did have a sleep disorder. I was always
5 awake trying to make sure that nothing happened to the
6 patients in the intensive care unit, which was the same
7 method that I used to deal with the situation when I was
8 in Saudi Arabia.
9 I encouraged my nurses in Saudi Arabia to
10 sleep. However, I would never allow myself to sleep. I
11 was always vigilant. Due to this Persian Gulf
12 investigation, I have been diagnosed and treated of a
13 sleep disorder and have, for the past nine months, been
14 able to sleep. And I really would just like to thank the
15 committee for any efforts that you all have made to
16 facilitate the care of the veterans. Thank you.
17 DR. LANDRIGAN: Thank you, Captain. I turn to
18 the committee for any questions.
19 DR. LARSON: Did you have any difficulty
20 getting through the hotline or was it -- how was it for
21 you?
22 CAPT. KILCAWLEY: No, ma'am. I dialed the 1-
29
1 800 number and they said that someone would be calling me
2 back to schedule an appointment. And that did, in fact,
3 happen. Now, I don't know if that was because I was on
4 active duty or not and because I was working in a major
5 medical center. But I had no difficulty.
6 DR. LARSON: How long before they called you
7 back?
8 CAPT. KILCAWLEY: About two weeks.
9 DR. LANDRIGAN: And are you still stationed
10 down in El Paso now?
11 CAPT. KILCAWLEY: I am stationed at Fort Sam
12 Houston now.
13 DR. LANDRIGAN: Okay. Thank you. Okay. Well,
14 thank you very much. Our next witness is Mr. Victor
15 Silvester.
16 MR. SILVESTER: Good morning. My name is
17 Victor Silvester. I am the national president of the
18 Operation Desert Shield-Desert Storm Association but I
19 speak to you today as a father of a Desert Storm veteran.
20 I also speak to you today as a friend of a man who is
21 lying in critical condition who is also a father of a
22 Desert Storm veteran who is also a radiation survivor who
30
1 is also a Vietnam veteran who would give his right arm to
2 be here today and is clinging to life in the Amarillo VA,
3 hoping to stay alive. And his last words at three o'clock
4 this morning was that he was going to hang on to know that
5 we had mentioned his name and that he was with each and
6 every veteran with us here today, in spirit.
7 That young man's name is Coy D. Overstreet. He
8 has fought long and hard for the last five years as --
9 both as a service officer, as a Marine, and as a veteran
10 for the rights and help and the families of Desert Storm.
11 I ask each and every one of you, if you will, somewhere
12 along this morning, take a moment and think of Coy lying
13 in critical condition in that hospital.
14 Mr. Chairman, members of the committee, ladies
15 and gentleman, fellow veterans. Seven long years ago in
16 1989, an authorized representative of the United States
17 government sat on my couch. For over an hour this
18 gentleman told us of the benefits for my son's
19 consideration for joining the nation's all-volunteer armed
20 forces.
21 He told us of the educational benefits. He
22 told us of the training benefits. He told us of the
31
1 medical benefits. He informed us and he assured us that
2 if my son got sick, hurt, or wounded in the service of
3 this country, that his government would take care of him.
4 Based on that presentation and the information
5 contained therein, we signed that contract. I signed it
6 because he was underage and he wanted to serve this
7 country. The authorized representative of the United
8 States government also signed that contract.
9 My son served his time. He fought this
10 government's war. He honored his portion of the contract.
11 The question is, when is the United States government
12 going to honor the responsibility of its portion of the
13 contract? For my son and for all of the Desert Storm
14 veterans whose war continues as we speak, the present Gulf
15 illness situation is not an issue of whether chemical or
16 biological products were used or whether our family
17 members were exposed to those products.
18 It is not an issue of whether there was
19 exposure to depleted uranium, endemic diseases, or
20 investigational drugs. These are moot points of issue.
21 The primary issue is that fact that there was a contract
22 signed between the United States military personnel of
32
1 Operation Desert Shield and Desert Storm and the official
2 representatives of the United States government.
3 A contract with a commitment for the provision
4 of healthcare if there was injury, sickness, or wounds
5 incurred during that service to this nation. As
6 authorized representatives of the United States
7 government, it is your legal responsibility to recommend
8 that the government portion of its own contract be
9 honored.
10 In November 1990, the young men and women in my
11 son's unit knew of the distinct possibility of government
12 commitment to veterans' healthcare being questionable.
13 They knew that there -- more than likely -- would be a
14 course of benefit evasion taken by the VA.
15 Three out of four of these young men and women
16 had family or family friends who fought the Agent Orange
17 war, who had fought the Veterans' Administration war.
18 They did not want a second Agent Orange. Members of the
19 committee, we are now in the third generation of veterans
20 who have been misinformed, been labeled as malingerers,
21 been lied to, and have been deceived by a cold,
22 calculating government bureaucracy.
33
1 Veterans of World War II were subjected to
2 mustard gas experiments, lied to, and denied benefits.
3 Korean War era veterans were subjected to radiation
4 experiments, deceived, and denied benefits. Vietnam
5 veterans still continue the battle of the Agent Orange
6 war. And now the Persian Gulf veterans continue on.
7 I wonder if the 150 soldiers who were placed in
8 isolation with virus infections in the Bosnia theater will
9 become the foundation of the fourth generation. Members
10 of the committee, can you assure the American people that
11 the thousands of Gulf War veterans who are still out
12 serving on active duty in the reserves and National Guard,
13 who are standing in the front lines in defense of
14 democracy and freedom, can withstand the rigors of the
15 next call to arms?
16 Do they have the fortitude to win that call to
17 arms or will your assurances have the same substance as
18 the assurances that the Department of Defense and
19 Veterans' Affairs gave us and gave the American people in
20 January 1991 when they told us that the VA facilities in
21 Dallas and San Antonio had been designated to receive
22 chemical and biological warfare casualties and that the VA
34
1 personnel have been training for five months to handle
2 those casualties.
3 Will your assurance be the same substance as
4 that of the military medical community who call for more
5 research when billions of dollars have been spent
6 researching over the last 25 years -- over $1 billion in
7 1969 alone. Where are the results of that research and
8 when will the taxpayers get their money's worth?
9 The excuse for having to react quickly to the
10 Iraqi threat in Kuwait is no excuse for the operational
11 shortcomings of the Gulf War. Exercises, computer
12 programs, and military strategy profiles on American troop
13 deployment have been conducted by the U.S. military since
14 the 1990s -- correction, the 1970s.
15 The United States government sets the standards
16 of freedom and democracy for the world of the 21st
17 century. I ask you to set the standard of freedom and
18 democracy for the Desert Storm veterans. Honor the
19 contract. Thank you.
20 Mr. Chair, I would like to present you with the
21 Yellow Ribbon Committee's interim report.
22 DR. LANDRIGAN: Thank you. What -- Mr.
35
1 Silvester, what is your son's status now?
2 MR. SILVESTER: My son's status now is that of
3 waiting ten months to get an appointment to -- for a rash.
4 When he went over there, he didn't have the rash so they
5 told him there was nothing wrong with him. I won't tell
6 you where he told them to stick the VA.
7 DR. LANDRIGAN: Is he still on active duty?
8 MR. SILVESTER: No, sir. He is on IRR. He
9 won't go near the VA.
10 DR. TAYLOR: So he isn't receiving medical
11 care --
12 MR. SILVESTER: No, ma'am.
13 DR. TAYLOR: -- from the Veterans'
14 Administration?
15 MR. SILVESTER: He was told there was nothing
16 wrong with him. He sat for eight and a half hours. The
17 doctor saw him for five minutes and told him there was
18 nothing wrong with him. Waited ten months for an
19 appointment for a rash. When he got up to Lubbock to get
20 the rash looked at, there was no rash.
21 Told him there was nothing wrong. Go home.
22 DR. LANDRIGAN: Other questions? Okay.
36
1 MR. SILVESTER: Thank you, sir.
2 DR. LANDRIGAN: Thank you, sir. Our next
3 witness is Ms. Sally Medley.
4 MS. MEDLEY: Good morning. Thank you so much
5 for allowing me to talk here. My name is Sally Medley.
6 My family and I have a vested interest in the Desert Storm
7 troops and their illnesses for our family suffers from the
8 same problems -- the same illness. Yet none of us have
9 ever been even close to the Desert Storm theater.
10 I am a housewife at this point in time. I have
11 had to retire from work. My husband is an employee with
12 the Texas Department of Corrections. Our daughter is a
13 student. Approximately three years ago, our daughter
14 became very ill with the chronic fatigue, the weakness,
15 and neuromuscular disease that left the left side of her
16 body withering and to this day it is still two inches
17 smaller than the right side. We
18 went to a lot of different doctors. Really didn't get any
19 answers. One of the doctors indicated that she had Lou
20 Gehrig's Disease or ALS but no one really knew. We were
21 actually watching her die in front of our eyes and
22 couldn't get any information -- not from lack of trying.
37
1 We decided to start a support group in our area
2 for people with neuromuscular problems -- the same
3 problems that our daughter was experiencing -- because we
4 live about 65 miles north of Houston and the majority of
5 us go to Houston for medical treatment.
6 When our local newspaper ran an article --
7 front-page article stating that we were going to be
8 starting the support group in our area, our phone didn't
9 quit ringing for three or four weeks, night and day.
10 People were calling, crying, We felt like we were the only
11 ones that were going through the same problems you all
12 were going through.
13 Our family and Julie's doctors began to think
14 that possibly there was something environmentally wrong in
15 our area. We asked the Texas Department of Health and the
16 TNRCC, which is the Texas National Resource Department to
17 come in and do some studies.
18 This was done. Basically, their conclusion was
19 this is a cluster of coincidences with 26 cases of Lou
20 Gehrig's in a rural, sparsely-populated area. We are
21 going to have 26 cases of Lou Gehrig's Disease in a small
22 area? I think not. Cluster of coincidences was what they
38
1 came up with.
2 We also had a number of multiple sclerosis,
3 myasthenia gravis, polymalasia rheumatica -- all of the
4 neuromuscular diseases plus all of the other same symptoms
5 the Desert Storm vets are experiencing. Our own support
6 group membership list -- basically, the majority of the
7 people we dealt with were all employees of the Texas
8 Department of Criminal Justice, which is the Texas prison
9 system.
10 Thank God for Jean North. She is Drs. Garth
11 Nicolson and Nancy Nicolson's secretary. She has a home
12 up in that area -- an old homestead in our area. She
13 happened to read one of the articles in the local
14 newspaper stating what our problems were in that area.
15 She took the article back to Houston. Showed it to the
16 Nicolsons.
17 They gave us a call. We went down and talked
18 with them. They suggested possibly we might have a
19 mycoplasma incognitus infection. We put our daughter on
20 the doxycycline because we were getting no results from
21 anything else. We thought, Why not give it a try?
22 This had to have saved her life. Within a few
39
1 weeks, she was better. Within a couple of months, the
2 muscle deterioration had stopped and the majority of the
3 pain had stopped. We -- later we found out that not only
4 Julie but then I started coming down with the symptoms.
5 My husband started coming down with the symptoms.
6 We were all tested and tested positive for the
7 mycoplasma incognitus with the HIV capsule gene in it. We
8 started checking into what was going on. In the 80s, the
9 Texas prison system in Huntsville was very quietly and
10 quickly taken over by retired military employees.
11 The inmates -- also during that time, Dr. James
12 Watson, a Nobel Prize winner for DNA research, and several
13 other doctors were doing research at the Texas prison
14 hospital. We talked to Dr. Watson. He says he was doing
15 research on a flu vaccine. He has stated in a magazine
16 that he was doing DNA research on what causes criminal
17 behavior in the prison system there, so I don't know what
18 the answer is or what type of research he was doing.
19 When the inmates were injected in the forearm,
20 they were told they were given a flu vaccine. When the
21 employees were encouraged to go take this particular shot,
22 they were told it was a TB test. Whatever it was, we
40
1 don't know. We do know that these employees now -- some
2 of them are ex-employees -- are coming up positive to the
3 same problems that we have.
4 Currently -- oh, one other thing. We had a
5 farm manager, a Joel Mueller, who worked for TDC. He fell
6 ill on Labor Day weekend with flu-like symptoms, then
7 every system in his body started shutting down. The
8 gentleman died two weeks later. He was positive with the
9 mycoplasma incognitus with the HIV capsule gene in it.
10 Currently, our family is under Dr. Charles
11 Hinshaw's care. He, too, has diagnosed all three of us
12 with Desert Storm illness. I have a few questions. Where
13 are the patient's rights during all these experiments? Why
14 isn't there a physician outcry? We talked to doctors.
15 They say, Yes. We know something is wrong but we don't
16 know what it is.
17 Why isn't the public more concerned? I have
18 talked to people and they say, Oh, there is nothing to the
19 Desert Storm illness. I read about it in the newspaper.
20 There is nothing to it. Was this premeditated murder or
21 was it just another cluster of coincidences on the
22 prisoners that got out of hand and went into the general
41
1 population? I don't know.
2 How many other experiments are being -- going
3 on like this? How many of other people are being involved
4 in stuff like this? Do the experiments still continue in
5 our area? I don't know. I know the illnesses do. I
6 really just don't have any answers to these. I am looking
7 for them and I would appreciate any help I can get.
8 Thank you very much.
9 DR. LANDRIGAN: Thank you, Ms. Medley. And Ms.
10 Medley, I think there are one or two questions for you.
11 Yes.
12 DR. TAYLOR: You mentioned that none of your
13 family members served in the Gulf.
14 MS. MEDLEY: No.
15 DR. TAYLOR: So you are linking their symptoms
16 that they are experiencing with prisoners?
17 MS. MEDLEY: Experimental -- experiments going
18 on at the Texas prison system, basically in the middle
19 80s. The majority of the people that I deal with -- I
20 have 350 families in our area. We call it the Mystery
21 Illness, for lack of a better diagnosis. This was started
22 way before any of us were ever diagnosed with anything.
42
1 We called it the Mystery Illness.
2 Yes. These people do work for the prison
3 system.
4 DR. TAYLOR: Your husband works for the prison
5 system.
6 MS. MEDLEY: Yes.
7 DR. TAYLOR: But he developed the illness after
8 your daughter did -- or prior to?
9 MS. MEDLEY: Basically. But what I can
10 understand from reading volumes and volumes and volumes on
11 mycoplasma incognitus is this can lay dormant, very much
12 like the HIV virus before it rears its ugly head.
13 Something attacks your immune system, then it becomes
14 activated.
15 DR. TAYLOR: Okay.
16 MS. MEDLEY: Yes.
17 DR. LARSON: Ms. Medley, just two quick
18 questions. How are you now? Are you still under
19 treatment or once it is treated, does it go away?
20 MS. MEDLEY: We have got the muscle
21 deterioration taken care of in Julie and, I think, in my
22 husband and myself. We still have the multiple chemical
43
1 sensitivities. We are having bouts, still, of the chronic
2 fatigue. We are at -- you know, we are in a program to
3 develop our immune system. Our immune system was shot.
4 DR. LARSON: But you don't take the doxycycline
5 any more?
6 MS. MEDLEY: We took -- we put Julie on
7 doxycycline for six months. The first three or four days
8 was just like chemotherapy. But she was so determined
9 that nothing else that we were doing was working that she
10 was going to give it her best shot.
11 She was a 17-year-old high school kid that
12 should have been full of energy and meanness or something.
13 She wasn't. I mean, she was just --
14 DR. LARSON: And the second question. Are you
15 aware of anybody who is looking at the prevalence of this
16 mycoplasma in the general population? In other words, is
17 it found particularly in groups that have symptoms or how
18 prevalent is it in the general population?
19 MS. MEDLEY: According to Dr. Lowe at U.S.
20 Armed Forces Institute of Pathology, when I first started
21 talking with him several years ago -- a couple of years
22 ago -- he said that it would -- the mycoplasma incognitus
44
1 probably would affect 3 to 4 percent of the general
2 population and that it would be -- it could be contagious.
3 DR. LARSON: Thank you.
4 DR. LASHOF: Have you had various test done on
5 the immune system?
6 MS. MEDLEY: Yes, ma'am.
7 DR. LASHOF: And do you know anything about the
8 results of those tests?
9 MS. MEDLEY: Yes, ma'am.
10 DR. LASHOF: Could you tell us something about
11 what tests -- what those results are?
12 MS. MEDLEY: I have copies of it in my
13 briefcase, I believe. Dr. Hinshaw in Wichita, Kansas -- I
14 believe he has spoken before you all at the Kansas City
15 meeting -- is treating us currently for the multiple
16 chemical sensitivities. But yes, the -- he did the liver
17 function test, the different blood tests to find out about
18 the T-cells, the B-cells, and all the other immune.
19 I am not that familiar -- I am now currently
20 studying the immune system but since we are working on
21 that next. Heretofore, it was basically mycoplasma
22 incognitus or some of the muscular diseases, trying to
45
1 find answers. We basically had to find answers. Go to
2 our regular doctors and say, Would you test us for this?
3 Could this possibly be what was wrong?
4 DR. LANDRIGAN: Ms. Medley, if you want to send
5 in any supplementary material along that line, you should
6 feel free to do so.
7 MS. MEDLEY: Thank you, sir.
8 DR. LANDRIGAN: All right. Thank you very
9 much. All right. Our next witness is miss Shannah Clark.
10 Ms. Clark.
11 MS. CLARK: Hello. First, I would like to
12 start out by letting you all know about a meeting that
13 recently took place. First Lady Hillary Rodham Clinton
14 was in Dallas about three weeks ago for the signing of her
15 book, "It Takes a Village."
16 And I was able to introduce her to my daughter
17 and to another child suffering from birth defects. To me,
18 she was very concerned with the children and especially
19 when she learned their fathers were Gulf War veterans.
20 DR. LANDRIGAN: Take your time, ma'am.
21 MS. CLARK: She took some information from us
22 and later she said, in an exclusive interview, that she
46
1 would do all she could to get us some help as well as some
2 answers. And just this past Thursday I had a personal
3 phone call from her office saying that they were willing
4 to help and research this.
5 But today I am here on behalf of my husband
6 Darrell and my daughter Kennedi, both who I believe are
7 suffering because Darrell served our country in the Gulf
8 War. Darrell served with the Army's 18th Airborne
9 Division and participated in the Gulf War from September
10 of '90 through March of '91.
11 Since his return, he has been hospitalized many
12 times with pneumonia and suffers from respiratory
13 problems. He also experiences fatigue and mood swings
14 that cause him to become depressed. And he has never been
15 depressed a day in his life.
16 In the summer of '93, he was tested at Brooke
17 Army Medical Center and tested positive for radiation.
18 And since that time, his military health records and shot
19 records have been mysteriously misplaced. My daughter
20 Kennedi, now three, was diagnosed with congenital
21 hypothyroidism, which is an absence of the thyroid
22 hormone, at the age of two weeks.
47
1 She was hospitalized in a German children's
2 hospital while they tried to regulate her hormone level.
3 It was also during this hospitalization she developed
4 disseminated hemangiomatosis, which are collections of
5 blood vessels that gather to make a benign tumor.
6 Her hemangiomas grew over her nose, her mouth,
7 her scalp, near her eye, around and in her ears, on her
8 lower face, her right arm, her vaginal and rectal area,
9 and most markedly on her right leg. She was also noted to
10 have an enlarged heart with a murmur and she is severely
11 anemic.
12 After being transferred to Wilford Hall Medical
13 Center, she had laser surgery on the hemangiomas on her
14 airway to enable her to breathe. An MRI study shows that
15 there are many other internal hemangiomas as well. So
16 far, she has undergone three lasers on her airway and is
17 currently undergoing laser therapy for the lesions on her
18 face.
19 She has been on a regimen of medications since
20 she was two weeks old and she will continue to do so for
21 the rest of her life. My husband is among thousands of
22 veterans who are suffering from unexplained ailments and
48
1 my daughter is one of the hundreds of children born to
2 veterans of the Gulf suffering from birth defects.
3 Since I have become actively involved in this
4 issue, I have received letters from parents all over the
5 U.S. who also have children with multiple defects and some
6 who have even died. This really concerns me. I am not a
7 doctor or a scientist but I do believe that there is a
8 connection to the exposures of our veterans during the
9 Gulf.
10 At this time, the Association of Birth Defect
11 Children in Florida has a database of hundreds of
12 confirmed cases of children with birth defects born to
13 Gulf War veterans and the numbers are growing rapidly.
14 Public statements by the VA about testing of the families
15 have been made, yet not my family or any others that we
16 have been in contact have been invited to be a part of any
17 study.
18 Many veterans have since gotten out of the
19 military and have had children with problems but I don't
20 understand how you are collecting data on these families
21 and how you are collecting data on the number of children
22 who are not born in military hospitals or whose defects
49
1 were not apparent at birth. I don't believe these points
2 are being taken into consideration.
3 I appreciate being a part of this hearing today
4 but while we are here, time is passing and our veterans
5 and especially our innocent children are suffering. And
6 many families are wary of the risk of having more children
7 or even starting a family at all.
8 We need answers and help today, not tomorrow,
9 and certainly not ten years from now because by then it
10 will be too late. Thanks.
11 DR. LANDRIGAN: Ms. Clark, how old is Kennedi
12 now?
13 MS. CLARK: She is three.
14 DR. LANDRIGAN: And is she on thyroid
15 medication?
16 MS. CLARK: Yes, she is.
17 DR. LANDRIGAN: That is lifelong, I guess.
18 MS. CLARK: Yes. She doesn't have a thyroid
19 gland at all.
20 DR. LANDRIGAN: Her thyroid status -- I am a
21 pediatrician and --
22 MS. CLARK: Her thyroid never developed.
50
1 DR. LANDRIGAN: Right. But it looks like
2 they -- she is adequately medicated. Good.
3 MS. CLARK: Uh-huh.
4 DR. LANDRIGAN: Okay. Other questions?
5 DR. LARSON: Mr. Clark, how are you now?
6 MR. CLARK: How am I? Well, I feel fine other
7 than the mood swings -- excuse me. I feel fine other than
8 the mood swings I will have every once in a while. My
9 short-term memory loss when I am in the middle of talking
10 with somebody, especially in the business I am in -- I am
11 in the insurance business -- when I am talking to somebody
12 and all of a sudden, I will just lose my place in where
13 I -- you know, what I was talking about and have to start
14 completely over again.
15 I have had real problems with my respiratory
16 system and also fatigue and, of course, my wife talked
17 about depression. I just go through these little -- it is
18 a roller coaster. I will feel good for about a month and
19 then the next month, I just -- I will go down and I
20 just -- all I want to do is sit on the couch and not do a
21 thing.
22 That is basically where I am at right now. But
51
1 I am not concerned with myself. I am concerned, not only
2 with Kennedi by all the other hundreds and soon to be
3 thousands of children as we are finding them daily. We
4 are having people write in that weren't in -- people who
5 got out like I did, ETS'd out of the military and had
6 their children in military hospitals and they have these
7 defects.
8 The numbers will start increasing and those are
9 the children that we need to take care of. Okay? I
10 signed on the dotted line and I knew what I was signing
11 the dotted line for. Okay. I knew I would serve my
12 country and I would die for my country but I did not sign
13 her name and I did not sign her name.
14 When it brings those two, you know -- when it
15 affects them, there is something wrong. Okay? If it was
16 just me, I wouldn't be up here bitching right now.
17 DR. LANDRIGAN: Thank you very much. Our next
18 witness is Mr. Ronald Matthews.
19 MR. MATTHEWS: Good morning. My name is Ronald
20 Matthews. I served in the Persian Gulf for the Big Red
21 One with the Fourth Cavalry from January 10, 1991 through
22 March 24. I was a helicopter pilot flying scout missions,
52
1 seek and destroy missions.
2 I was all over the region so if there was
3 anything out there, I am sure I was exposed to it. Upon
4 returning from the Gulf, approximately four or five months
5 later, I started developing problems with diarrhea,
6 constipation, unable to sleep, painful ejaculations,
7 headaches -- but I would say it wasn't headaches but head
8 pressure.
9 I was at Fort Rucker, Alabama, going through a
10 flight change from the OH-58 to the UH-60 Blackhawk
11 transition. I was sent to Korea. Upon my arrival in
12 Korea, that is when the illness really started to take
13 over my body and I was Med-Evac'd from Korea to BAMC
14 medical center here.
15 Once I arrived at BAMC, that is when everything
16 started happening wherein that they was running tests.
17 They was telling me there was nothing wrong with me. It
18 was all in my mind and they decided they wanted to
19 discharge me. Been in the military almost 15 years, given
20 my entire adult young life to the military -- ten and a
21 half years to the United States Marine Corps where I
22 served as a drill instructor, which I think is the highest
53
1 position for a Marine, and an officer candidate
2 instructor.
3 Then coming over to the Army to fly helicopters
4 to live a dream that most people in my situation would
5 never even imagine. But to become ill and to have the
6 country turn its back on you, like has happened to me and
7 so many others, to say there is nothing wrong.
8 I am 34 years old and every day I am in pain.
9 I have sleep apnea where I have to sleep with a machine.
10 My wife -- she had to have a full hysterectomy and the
11 doctor that did the hysterectomy said he never seen
12 anything like this.
13 We go the hospitals. And presently all I do is
14 go to the VA. I have no other medical care and the only
15 thing I am getting from the VA is psychological treatment
16 and they want to give you medications. Other than that,
17 the only thing I have going for me is my family and my
18 strong belief and faith in the Lord.
19 Now there is so many reasons that are being put
20 out here of why this can't be when all we need is one
21 reason why it can be. And to my, I should live a long and
22 prosperous life because the only -- one reason I know is
54
1 because I have a 102-year-old grandmother that still has
2 all her faculties today.
3 So during my hearing when they put me out of
4 the military, my mother say something that is instilled in
5 me when she told them, You know, my son -- he should have
6 died over there in the war instead of being sent home to
7 die slowly.
8 And you try to get this help. You try to talk
9 to the right people. You are thinking you are talking to
10 the right people but they say they are going to do things
11 for you but nothing ever happens. And I am determined to
12 be retired because I earned it. Not only do I deserve it
13 but I earned it.
14 I did not question the facts when they said,
15 You need to take this shot, or, You need to take this
16 pill, or, You need to fly this mission. I was the only
17 pilot in my unit to fly a single-pilot mission -- the only
18 black pilot. So it is not that it is a racial thing but
19 when it came down to choosing somebody to do it, they
20 chose me and I did it.
21 I have nothing. I get $289 a month from the VA
22 plus I go to school. That is it. I am surviving the best
55
1 way I can and I shouldn't have to, nor should any one of
2 these other veterans have to go through this. We can't
3 get -- we don't get the information after we get all these
4 tests.
5 We go through all these tests. I still don't
6 know what is wrong with me. I know I have sleep apnea. I
7 know they say I have fibromyalgia but what is that? They
8 don't really know. It is just muscle pains and joint
9 pains, diarrhea, reflux.
10 You get sick. Instead of being a normal thing
11 of two or three days, it is two or three weeks. Something
12 has to be done. We need justice and I especially want my
13 justice. I want to be retired. I should be retired so I
14 can get the medical benefits and my kids can be taken care
15 of in the future the way they should be because I gave my
16 all for this country and I would do so again if I had the
17 help to do so. Thank you.
18 DR. LANDRIGAN: Mr. Matthews, are you receiving
19 medical care today?
20 MR. MATTHEWS: Like I said, I only go to the VA
21 for psychological evaluations every three months. I
22 finally got an appointment, after three years, to go so
56
1 rheumatology which will be on the 28th of next month. But
2 meanwhile, I have been suffering.
3 DR. LARSON: So would you -- your status is not
4 retired?
5 MR. MATTHEWS: I am out of the military,
6 period. I am not retired. I am on my own. I am just
7 another civilian that served this country. When I went
8 through my hearing, they said, Here, we are going to give
9 you 20 percent disability. Go see the VA.
10 DR. TAYLOR: I had one question about your
11 service in the Gulf. You mentioned that you flew
12 helicopter flights. Were there any specific instances
13 where you noticed specific exposures? Were you exposed to
14 similar areas as others have talked about -- the Gulf
15 fires or --
16 MR. MATTHEWS: Ma'am, I lived approximately six
17 city blocks from the fires for almost two weeks. I flew
18 in that stuff almost every day. We had one mission where
19 we had to seek and destroy enemy vehicles that was not
20 totally destroyed, which we knew was hit with depleted
21 uranium cells after the fact. We was not told to wear
22 chemical gear so we just went out and did what we had to
57
1 do.
2 I still haven't been tested for that type
3 exposure.
4 DR. LANDRIGAN: When you were near those fires,
5 did a lot of black soot get on everything?
6 MR. MATTHEWS: Yes.
7 DR. LANDRIGAN: On your belongings and
8 everything?
9 MR. MATTHEWS: Yes.
10 MR. CASSELLS: Mr. Matthews, did you access the
11 VA system? You say you currently have disability under
12 the VA system. Did you access the VA system through the
13 registry program -- the Gulf War Registry or did you
14 access while you were still on active duty through the
15 CCEP program?
16 What type of evaluation have you had?
17 MR. MATTHEWS: I accessed the VA system right
18 after they gave me my walking papers out of the military,
19 in fact, the next week.
20 MR. CASSELLS: But through the registry
21 system --
22 MR. MATTHEWS: No.
58
1 MR. CASSELLS: -- for Gulf War veterans?
2 MR. MATTHEWS: Not through the registry system,
3 no, sir. But I am registered on that system.
4 MR. CASSELLS: Now?
5 MR. MATTHEWS: Now.
6 DR. LANDRIGAN: Thank you very much, Mr.
7 Matthews. Well, we are scheduled now to take a break. We
8 are running a few minutes ahead so let's take 15 minutes
9 and resume at 5 after the hour, please. Thanks.
10 (Whereupon, a short recess was taken.)
11 DR. LANDRIGAN: Good morning again. Let's
12 resume, please. So we are now prepared to continue to
13 hear testimony from members of the public and our next
14 witness is Dr. lawrence Plumlee. Welcome, Dr. Plumlee.
15 DR. PLUMLEE: Thank you. I am Lawrence
16 Plumlee. I am a physician, formerly assistant professor
17 in the Department of Psychiatry and Behavioral Sciences at
18 the Johns Hopkins School of Medicine and formerly medical
19 science advisor to research offices in the U.S. Public
20 Health Service and the U.S. Environmental Protection
21 Agency.
22 I have put on your places while you were on
59
1 break an outline of the five-minute talk that I am about
2 to give. It is also shown here on the screen. Notice
3 that I have written this paper with several colleagues and
4 the -- let's look at the second slide.
5 The second slide mainly emphasizes that the
6 aggregate of signs and symptoms that together constitute
7 the picture of a disease is what we call a syndrome. In
8 order to describe a syndrome, you have to look at all
9 symptoms of the illness. And it was interesting if you
10 will notice in the second paragraph under, "Reality,"
11 without data on the full aggregate of signs and symptoms
12 being seen, you can't define a syndrome.
13 The Institute of Medicine reported last month
14 that the analyses of symptom data conducted by the
15 Comprehensive Clinical Evaluation Program of the Defense
16 Department lacked the sophistication that the
17 identification of a new syndrome would require. Next
18 slide, please.
19 The next one is about differential diagnosis.
20 To do a differential diagnosis, you look at all of the
21 different diagnoses that could explain all of the symptoms
22 that you have. It is interesting to note that 51 percent
60
1 of the sick patients in the Comprehensive Clinical
2 Evaluation Program still had unexplained symptoms that
3 weren't explained by their diagnoses and they weren't
4 tracking symptoms such as new chemical sensitivities to
5 previously tolerated exposures such as drugs, perfumes,
6 and alcohol; new photosensitivity to sunlight or
7 occasional dark brown to red-colored urine.
8 These disorders all suggest the possibility of
9 one of the acquired porphyrias yet they didn't even screen
10 for lead poisoning, one of the most common toxically
11 acquired porphyrias that could easily account for many of
12 the veteran's musculoskeletal and psychiatric symptoms.
13 Next slide, please.
14 On this table we have just taken the ten most
15 commonly reported symptoms from the CCEP study in the
16 left-hand -- that is in the first column labeled, "Gulf
17 War Syndrome," or "GWS," and we added the three additional
18 symptoms that were common to acquired porphyrias: the
19 waxing and waning of symptoms, the photosensitivity to
20 sunlight, and chemical sensitivity which had been reported
21 anecdotally.
22 And we note that all 13 of these symptoms are
61
1 seen not just in Gulf War Syndrome but in chronic fatigue
2 syndrome, in fibromyalgia syndrome, and in multiple
3 chemical sensitivities. Given these well-documented and
4 compelling similarities, why have the Department of
5 Defense and VA not required that all sick vets with these
6 symptoms be screened for chronic fatigue syndrome, CFS;
7 FMS, fibromyalgia syndrome; or MCS, multiple chemical
8 sensitivities.
9 Why would the DOD and VA never release the data
10 on the prevalence of these syndromes among Gulf War vets?
11 Why has the DOD issued diagnostic guidelines including
12 instruction for chronic fatigue and fibromyalgia syndromes
13 but not for multiple chemical sensitivities?
14 And why did the VA officials specifically
15 instruct local VA doctors not to report either the symptom
16 or the diagnosis of multiple chemical sensitivity? Next
17 slide, please.
18 Therefore, we recommend that the VA and DOD's
19 failure to record and analyze all reported symptoms and
20 their unjustified focus on psychogenic disorders have
21 undermined the accurate characterization and differential
22 diagnosis of Gulf War Syndrome.
62
1 Secondly, the VA and DOD must develop a common
2 working case definition of Gulf War Syndrome and both must
3 use it consistently to screen all veterans who seek
4 diagnosis of Gulf War-related complaints.
5 Three, coding instructions and criteria for
6 multiple chemical sensitivities need to be distributed
7 throughout these agencies.
8 Fourthly, DOD's current optimal questionnaire
9 which was designed for use at the end of the now-
10 discontinued Phase 3 must be incorporated into the larger
11 symptom questionnaire. The DOD, now working on its fourth
12 CCEP report, has still not analyzed the MCS data from the
13 first three or even designated someone to do so. So we
14 believe that these -- the information should be released
15 to the private sector where we can do the analysis.
16 Fifthly, given the broadly overlapping nature
17 of these three civilian syndromes -- chronic fatigue,
18 fibromyalgia, and multiple chemical sensitivities -- any
19 clinical patients or research subjects suspected of
20 meeting the criterion for one of the conditions should be
21 evaluated for all three. The CDC explicitly recognizes
22 that fibromyalgia and multiple chemical sensitivities,
63
1 among others, may be co-existing conditions.
2 And finally, Gulf War veterans with skin,
3 psychiatric or neurological symptoms that are provoked by
4 sensitivity to sunlight or to drugs and chemicals must be
5 screened for disorders of porphyrin metabolism. Given the
6 excessive lead exposures experienced by troops in the
7 Persian Gulf, checking lead levels should be a high
8 priority. Thank you very much.
9 DR. LANDRIGAN: Dr. Plumlee, do you have
10 information you could share with us on potential sources
11 of lead exposure in the Gulf War theater?
12 DR. PLUMLEE: The information I had was that
13 during blackout periods, the troops were often forced to
14 be in tightly closed tents so that no light could be
15 emitted and they were using oil heaters, which -- and in
16 some cases, leaded gasoline was used in these heaters
17 because in Saudi Arabia, there was not ready availability
18 of unleaded varieties.
19 I know that there are other sources of lead
20 exposure.
21 DR. TAYLOR: Of the patients that you have seen
22 or with some of the persons that are included in the
64
1 research, have they seen quite a few patients with lead
2 exposure as well?
3 DR. PLUMLEE: We estimated that this was quite
4 a common occurrence because most of these people were
5 staying in tents and they were trying to keep blackout
6 conditions during much of the time.
7 DR. TAYLOR: So they have been medically tested
8 for lead exposure at the -- one of the centers? Or one of
9 you tested them for lead exposure?
10 DR. PLUMLEE: I don't have those data at my
11 fingertips right now but I would be glad to try to supply
12 it if I can find it.
13 DR. TAYLOR: That would be good.
14 DR. LANDRIGAN: Yes. Please do.
15 DR. LASHOF: Are you currently treating
16 patients with Gulf War Illness?
17 DR. PLUMLEE: Not in a formal way.
18 DR. LASHOF: How do you treat in an informal
19 way, if I may ask? Or could you tell me --
20 DR. PLUMLEE: If asked my --
21 DR. LASHOF: -- if the patients --
22 DR. PLUMLEE: If asked my opinion, I would
65
1 render it but I do not have a caseload of Gulf War
2 veterans.
3 DR. LANDRIGAN: Thanks very much, Larry. Our
4 next witness is Ms. Wendy Wendler. Ms. Wendler?
5 MS. WENDLER: I would like to present a
6 professional perspective on timely remedial action for
7 health purposes. I have a master's degree in business and
8 health management from the University of Dallas. It is
9 regrettable that I feel compelled to appear here as I did
10 before Chief Judge Weinstein in a 1984 Agent Orange
11 fairness hearing.
12 Apparently, DOD and the VA haven't learned
13 enough hard lessons from that conflict as thousands more
14 American families now must repeat them. Presently, I am
15 the volunteer National Public Affairs Coordinator for the
16 Desert Storm Justice Foundation.
17 For the past three years, I have heard a
18 hauntingly familiar litany of concerns that repeat the
19 medical, legal, and organizational quandaries which beset
20 my generation of warriors. The information and referrals
21 from me and other independent advocates are viable not
22 only for the committee's work but also for the public
66
1 health crisis faced by the troops, their families, and the
2 American taxpayers who must redress the mistakes of a
3 dysfunctional military establishment.
4 By April '94, I had prepared a summary list of
5 41 private sector contacts that I thought might help. It
6 now needs updating, of course, to include recent events
7 and international experts at last week's symposium in
8 Dallas, which could have been part of your Texas visit.
9 We have already had calls back from the people that we
10 left Sunday, so we are very pleased that Dr. Brown and
11 John Ford are attending.
12 My main mission is to run off at the mouth as
13 they say in the Ozarks where I went to get better when I
14 became ill after my war-time experience. Yet at this
15 fifth anniversary of the Gulf War, there still is no
16 concerted outreach from north Texas VA facilities or
17 anywhere else, it seems.
18 We continue to ask for a DSGF mailing, for
19 example. We are a bona fide 501-C3 organization, one of
20 the few nationally structured groups set up as a
21 membership and we just don't seem to get anywhere. I
22 think they have 1,200 Gulf War vets registered here in San
67
1 Antonio at the VA, the Public Information office told me.
2
3 We have 1,000 in Oklahoma City Ms. Whitcomb
4 checked on. They say they have 500 in Dallas. We can't
5 find them. They can't find us. We are dependent on the
6 media and they do a great job helping out but we need some
7 more help from you all.
8 I do try in small ways to educate the troops
9 about what I call environmental fitness, a self-managed
10 recourse for their illness. I also aim to help illuminate
11 factual research data for government and private sector
12 decision-makers including you, hopefully.
13 Actually, we are all here to remove your
14 plausible deniability and that of President Clinton. From
15 last August onward, he and his committee cannot say that
16 you didn't know about this any more, that you hadn't
17 realized about thus-and-so.
18 I hereby inform you that your on-the-job
19 training is ending and a renewed sense of urgency is
20 required. In this election year, every commander-in-chief
21 candidate must face the vets who attend your meetings and
22 the rest of the 945,000 troops from the Gulf arena who
68
1 cannot, besides their Gulf coalition compatriots abroad.
2 There are numerous tips I would suggest to
3 genuinely concerned power brokers. Basically, my message
4 is business-like as I urge you and vet families to utilize
5 as much as pragmatically possible the current coalitions,
6 organizations, programs, procedures, processes and systems
7 which might achieve our mutual goal speedily and cost
8 effectively.
9 There are already existing helps. Spare us
10 reinvention of the wheel, especially broken ones. For
11 example, it seems pointless to argue about whether a
12 mugger hits you with a baseball bat or a two by four while
13 you are quickly trying to stop the bleeding.
14 Essentially, I am a mouthpiece, not a doctor or
15 a lawyer. So here is my free advice for a dozen points
16 that I cannot make strongly enough.
17 Number One. This is not a drill. The infamous
18 Pearl Harbor quote says it best. These youngsters and
19 double-whammied Agent Orange aged old-timers are not
20 kidding. There is no rationale for them to be ridiculed
21 as, "sick call types," when their lives in the real world
22 would be so much better than any disability pittance or
69
1 government handouts.
2 If the DOD and VA Gulf registry alone were
3 available publicly on a monthly basis, it likely would
4 help refute cover-up defamation of what the Pentagon once
5 boasted was the most educated, finest trained, and best
6 equipped fighting force ever assembled in the history of
7 this planet. Yet now they are blamed for
8 these ills as if combat-hardened troops are just a bunch
9 of dingbats. Mostly -- excuse me. Many of the sickly
10 troops who returned from the Gulf War five years ago have
11 left the service. Among them, more than half a million
12 who have been thrown into the VA pit or dumped onto
13 private and community healthcare systems at even more
14 futile cost to other American families.
15 Outside of Pentagon parameters and seemingly
16 phony readiness statistics, by the VA's own count, more
17 than 3,000 formerly robust troops have sickened and died
18 likely unable to regain their immune equilibrium. The
19 active duty or reserve personnel who remain under DOD
20 auspices either escape these bizarre health troubles in
21 the first place or have been able, somehow, to continue
22 holding their jobs. Perhaps we ought to study
70
1 them. Figure out why they were spared. Discover what has
2 helped them cope better with such health challenges. I
3 hope you have a plan to assess ongoing challenges while
4 protecting the identity of those who are prey to ruthless
5 DOD and VA employment reprisals that we continue to hear
6 about behind the scenes.
7 We believe that, at DSJF, mandatory
8 registration would be helpful and we would like to call
9 for that -- perhaps an executive order or something. When
10 you make them self-select out to say they have problems, I
11 think we are asking for more problems.
12 How can the committee tackle this job without a
13 viable buddy count? Once the dread words, "mortality
14 studies," were uttered last August. I have a box of
15 federal and state Agent Orange paperwork puzzles which
16 didn't resolve similar biochemistry issues while fattening
17 the funding of career-minded researchers.
18 I am very eager to hear from Dr. Claudia Miller
19 today. I wonder why apparently toxic chemicals are still
20 being used to clean Houston Veterans' Administration Gulf
21 ward where our veterans also are threatened with interns'
22 perfumes and other hazards which the good doctor
71
1 supposedly is recommending they avoid.
2 While we listen to her version, let's see if
3 she speaks with her, "hands tied." That is the excuse I
4 have heard for negative reactions some patients are
5 suffering in Houston during her diagnostic testing. We
6 are glad she is there but if she has no way of dealing
7 with it, we would like to help. I wonder if that skews
8 the statistics of any of her studies and publications.
9 Number Two. Who done it?
10 DR. LANDRIGAN: Ms. Wendler, one more minute,
11 please.
12 MS. WENDLER: Thank you.
13 DR. LANDRIGAN: You may have another minute
14 but --
15 MS. WENDLER: Oh, all right. I would like to
16 point out that we have civilian experts who say that it is
17 catching. I would like to report to you in one of my
18 suggestions to get the lead out to relieve levels of
19 toxicity, whatever they are, that Mary Rhodes [phonetic],
20 who testified before you earlier, has been granted a fee
21 basis VA authorization to receive chelation treatment from
22 a civilian expert.
72
1 I am also questioning -- asking the same
2 question a congressional liaison asked me last August,
3 Where are their leaders?
4 We are concerned that none of the generals that
5 we all counted as heros have not come to the troops'
6 assistance. I would mention to you that my former
7 employee, the American National Red Cross, received $13.5
8 million from the Pentagon just after the war to help
9 resettle the troops and handle their problems.
10 It was couched in such terms that they returned
11 the money -- most of it -- to the Pentagon because it had
12 a mental health component requirement to be utilized. And
13 when I talked to the local Red Cross organizations, they
14 would very much like to help and look into that funding
15 again.
16 I would also like to read one thing that
17 General Schwartzkopf describes as how he recovered from
18 exhausting southeast Asian duty and postwar depression
19 after Vietnam by taking, "massive amounts of vitamins."
20 Some Gulf War vets continue to report improving their
21 energy levels, mental acuity, disposition, and work
22 capacity when they faithfully take specific extra
73
1 ingredients besides well-balanced meals and multiple
2 supplements.
3 I would really like to help you all look into
4 that and I have several referrals who might do so. I am
5 particularly concerned that the VA beef up their stop
6 smoking program. We have many veterans who want to do
7 that. They can't get in the program. It is almost like a
8 hoax. They don't -- when they get the patches, they take
9 them away from them. And we really do -- that is one of
10 my personal things that I believe might help Gulf
11 veterans.
12 The real Gulf War illnesses are a national
13 disaster and I believe President Clinton might call on
14 FEMA, which has 1,400 caseworkers available as I
15 understand it in Denton, Texas, north of me, to handle
16 what I understand in February of '94 was a one million
17 case backlog at the VA. And I certainly hope that has
18 been taken care of.
19 I would very much like to urge the president to
20 stay involved. Although he did not wear a military
21 uniform in his own wartime, as former Gulf War Defense
22 Cheney did not, he is now at the pinnacle of defense
74
1 superpower in the nation's command structure and I know he
2 will not turn away from his troops.
3 I pray for him and you in this difficult duty.
4 DR. LANDRIGAN: Thank you very much. Are there
5 questions for Ms. Wender?
6 DR. LARSON: Ms. Wendler, thank you for your
7 testimony. It would be helpful if we have -- had a
8 written copy because I was trying to write down your
9 recommendations and I wanted to clarify what some of the
10 things you are recommending or suggesting. And maybe in
11 addition to these clarifications you could send us your
12 testimony in --
13 MS. WENDLER: Yes. I have a written --
14 DR. LARSON: Let me just clarify now. One of
15 the things that you are suggesting is that the DOD and the
16 VA registry data be made available monthly?
17 MS. WENDLER: Yes. We have been asking for it
18 for several years.
19 DR. LARSON: Okay. And in what form would you
20 recommend that -- like, in a newsletter or what would
21 you --
22 MS. WENDLER: Well, I understand they already
75
1 do it. That is what -- you know, I am sort of the public
2 information person for DSJF and when I call, they have
3 it -- the Dallas public affairs woman says, Oh, I get that
4 every month because I was doing it for this, you know, for
5 our meeting in Dallas, doing a news release. Wanting to
6 sort of brag on them, I guess you would say.
7 DR. LARSON: Okay. And you said that you had
8 been asking for information about the vets and weren't
9 able to get it although it was part of the Freedom of
10 Information Act?
11 MS. WENDLER: Well, we are just trying to say
12 that we are here. That there are things the private
13 sector has always historically done. My grandmother
14 helped found the first support group of Rainbow
15 Division -- in World War I.
16 DR. LARSON: But you are having difficulty
17 getting the information?
18 MS. WENDLER: And it is like, you know, don't
19 ask, don't tell. I mean, nobody is going to tell you how
20 many there are. You might want to meet one of them. And
21 I have to, you know, give the VA credit in Dallas and it
22 is part of the one I know the best, in that they had a
76
1 meeting of everyone that is on the registry, I think, in
2 September of '93. And that is how I got some of the names
3 that I still work with.
4 But I mean, it has just become a personal
5 friendship thing now and I -- we are doing the -- for $10
6 a month --
7 DR. LARSON: Sure.
8 MS. WENDLER: -- DSJF hotline --
9 DR. LARSON: I just think it is helpful to get
10 the recommendations clear so that we can act on them or so
11 that we can understand --
12 MS. WENDLER: Let me make one point about the
13 registry. I have an older form but they have specific
14 categories of gender, types of ailments. It seems to me
15 that if you are going to put that information in, they
16 could just make the report that matches the form.
17 DR. LARSON: Okay.
18 MS. WENDLER: It is already public knowledge.
19 DR. LARSON: Okay. Another thing I think you
20 recommended was that there be a mandatory registry for
21 Desert Storm participants.
22 MS. WENDLER: Yes. We were discussing it at a
77
1 board meeting at DSJF before Christmas and it was just
2 like a little light. Because we continue to hear that
3 people are literally afraid for their jobs and their
4 families to say, Gee, I am failing my third PT test and
5 then they are going to kick me out I --
6 DR. LARSON: And your --
7 MS. WENDLER: -- can't fake it any more.
8 DR. LARSON: Your sense is that if it were
9 mandatory, it would take the pressure off those who are
10 volunteering.
11 MS. WENDLER: Yes. It just sort of flips it.
12 And it says, Why not?
13 DR. LARSON: Yes. Okay. And then another
14 recommendation was that the $13.5 million that had been
15 allocated to the Red Cross for resettlement or
16 readjustment or whatever --
17 MS. WENDLER: Yes. I --
18 DR. LARSON: -- be re-allocated --
19 MS. WENDLER: -- have the handout outside. I
20 brought the material with me.
21 DR. LARSON: Okay. Great.
22 MS. WENDLER: Most of it that I mentioned.
78
1 DR. LARSON: Then beefing up the smoking
2 program which is --
3 MS. WENDLER: Yes. That is a pet peeve of mine
4 but --
5 DR. LARSON: -- for a lot of good reasons --
6 MS. WENDLER: Well, it just helps, I think.
7 DR. LARSON: Yes.
8 MS. WENDLER: And they really are trying. When
9 they want to and then they can't, it just -- sort of
10 weird.
11 DR. LARSON: Then my last question is, you said
12 that you are aware of 3,000 vets who have been sick or
13 died out of the 900,000 that served. And if you have
14 information on that or --
15 MS. WENDLER: Oh, that is the VA's numbers.
16 Terry Jennison [phonetic], for Veterans Day, he gave me
17 the number of 2,900. And I -- Mr. Silvester and all of us
18 received bulletins. I took the lowest, most conservative.
19 DR. LARSON: Sure.
20 MS. WENDLER: They told me, I didn't make it
21 up, number. I mean, we believe there are more because of
22 just the way the reporting has probably been.
79
1 DR. LARSON: Right. Okay.
2 MS. WENDLER: But I mean, that is -- you can
3 take that one to the bank.
4 DR. LARSON: So thank you. I just wanted to
5 ask you to get those in written form so we are clear.
6 MS. WENDLER: Yes. And more than you ever
7 wanted to know, probably. I do have some people that
8 wanted to submit materials had we been able to do this in
9 Dallas and I will be packaging that up for you as well.
10 DR. LANDRIGAN: One more.
11 DR. LASHOF: One more question. Can I ask you
12 further about this mandatory. Would veterans really want
13 to be mandated to come in for an examination? I don't
14 understand how one can mandate one's former -- civilians.
15 MS. WENDLER: Well, certainly there is the DOD
16 registry that I understood they just called if they wanted
17 to.
18 DR. LASHOF: Well, those who are on active
19 duty, yes, can be ordered.
20 MS. WENDLER: Well, they are the ones --
21 DR. LASHOF: But once one is discharged and is
22 a veteran, to mandate a veteran come for an examination
80
1 seems to me somewhat inappropriate.
2 MS. WENDLER: Well, I am saying maybe -- I am
3 the English major. Maybe the language of it is that we
4 would like all of them to come, you know. It is a buddy
5 count. It is information on it. You heard Shannah Clark
6 tell you -- and I happened -- she used to live in my
7 area -- that she just -- people were being flooded.
8 Someone called me from near Washington, D.C.
9 yesterday out of 18 people to have birth defects. It is a
10 constructive thing, I think. And this is not just my idea
11 alone. But it dawned on us that how could we take the
12 onus off of it? How could we remove the stigma?
13 They are telling people not to go. It is sort
14 of like, you know, I mean, when they are in the Army, you
15 can tell them what to do. So if you said, You all go fill
16 out this form.
17 They fill out a million forms. It is kind of
18 like a secret ballot or something. I assume it would be
19 private, to a point. But there is something wrong with
20 what is happening and you all were -- none of us are
21 getting accurate information when I hear people tell me
22 that they -- understand those people have been ordered not
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1 to go get information, not to make it known.
2 I think it has something to do with their
3 readiness statistics and their PT.
4 DR. LASHOF: Well, we can look into it. But I
5 mean, we have been assured that people are told that they
6 can avail themselves of it and that there are no stigma
7 and that the announcements all tell you to call whether
8 you are ill or not. And we will look into whether --
9 MS. WENDLER: Well, I can put you in touch --
10 DR. LASHOF: -- other messages are going on --
11
12 MS. WENDLER: I can only put you in touch with
13 the people who told me this. I am the mouthpiece today
14 but it was obvious enough that we discussed it at board
15 meetings.
16 DR. LANDRIGAN: Well, anything you can provide
17 us will be to the good.
18 MS. WENDLER: That is great. We really do
19 appreciate you all. You have given us a forum.
20 DR. LANDRIGAN: Next, we have Mr. Antonio
21 Melchor. Mr. Melchor.
22 MR. MELCHOR: My name is Antonio M. Melchor. I
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1 served in the Persian Gulf aboard the USS Midway CV-41 as
2 a parachute rigger, second class. I was on board from
3 January to April. I am president of the Persian Gulf
4 Veterans of America.
5 How short a memory the news media has and we
6 all have. Don't you remember this event when Saddam
7 Hussein said, I have infected your troops for -- not only
8 your troops but for five generations past -- or, future --
9 with chemicals that are going to affect your families for
10 five generations in the future.
11 Nobody remembers that? He wasn't kidding. The
12 evidence is here -- the first generation, maybe the
13 second. I started getting sick with a tingling, numbness,
14 and burning sensation on my body and throat when we were
15 wiping up the wings of the E-2 Hawkeye airplanes that I
16 work with.
17 I remember thinking to myself, They have not
18 reported the use of chem war so why was I getting sick
19 with chemical intoxication? Later, we suffered more
20 chemical ingestion when our drinking, cooking, washing,
21 and bathing water became heavily contaminated with some
22 sort of chemical that burned our mouth, throat, esophagus,
83
1 and stomach when we -- when we took our showers, we
2 smelled of petrochemicals as well as the freshly-washed
3 clothes we put on.
4 The food tasted of kerosene. We were in a 100
5 percent contaminated environment. I became very sick with
6 digestive problems that same day that the contamination
7 came aboard ship on our drinking water. Later, I learned
8 from a chief petty officer in charge of distilling the
9 ship's water from the sea that we had indeed ingested
10 heavily contaminated water through our distilling plants.
11 The Navy ships' distilling plants are not
12 designed for modern combat situations and cannot filter
13 out chemicals. I was told by one of the undersecretaries
14 of the navy that it would cost too much to upgrade. In
15 other words, the iron ships will go on. The men can be
16 replaced.
17 Consequently, I now suffer, like many other
18 veterans and family members, from chronic fatigue
19 accompanied by acute depression, digestive problems. I
20 can no longer eat fish, which I used to eat to keep
21 healthy, or ethnic foods without getting sick.
22 I suffer from reflux and am constantly choking
84
1 on my digestive juices. I have to sleep with my upper
2 torso elevated or I would choke in my sleep. I suffer
3 from extreme joint and muscle pain followed by
4 disabilitating cramps that at times I cannot even get out
5 of bed because of this and basic other problems affecting
6 my body.
7 Also my memory blocks that control my normal
8 body functions are gone. In other words, if I were a
9 computer, all my command functions would be gone and I
10 would not be able to operate without a reboot. This is
11 what I have to do. This is what I have to do some
12 mornings.
13 I have to go through an extreme effort to
14 reboot myself so I can function. I am in a constant state
15 of agitation followed by uncontrollable rages, usually
16 against my family members. At home, life has become a
17 living hell due to my intolerance and unable to take the
18 everyday pressure.
19 And I am not alone in this. All the members
20 that have gone through Desert Storm have something like
21 this. But when we got to the VA, we are told that we are
22 isolated cases, that we are just the ones suffering from
85
1 this. And whatever we are suffering, it is in the general
2 population.
3 Well, that might be so, gentlemen. It might be
4 in the general population but not all these symptoms are
5 in one group, like we are suffering. Also, we suffer from
6 memory losses, like these other gentlemen have said.
7 Sometimes in the middle of a sentence, everything blots
8 out and we have to -- sometimes get our memory back,
9 sometimes we don't.
10 This is something we have to face every day.
11 Some of us cannot work. I am fortunate that I have a job
12 with -- sometimes I am suffering, I can stay and have
13 other people do my job because I am a supervisor. If it
14 wasn't for -- if I wasn't a supervisor, I wouldn't be able
15 to hold a job because I am in constant pain.
16 I am suffering from terrible memory losses. I
17 suffer from depression. I have no sense, sometimes, of
18 direction. I become disoriented. When I am out driving
19 sometimes, I don't even know where I am at. And these are
20 some of the things that we all suffer, some of us in a
21 more acute stage. And it is not getting better,
22 gentlemen. It is getting worse.
86
1 And then when we go to the VA, we are met --
2 for example, I went to this doctor. And he told me, I am
3 an expert on chemical warfare now. I have been taken by
4 the VA administration and have been shown that there was
5 no chemical used in the Persian Gulf. He said, I am an
6 expert. And I said, You are an expert? Then why are we
7 suffering all this? This is -- I used to be a chemical
8 instructor for the Air Force so I know when I see
9 chemicals being -- effect on people. And I told him, You
10 are looking at the proof right here. Every day you are
11 looking at the proof that there was chemicals used over
12 there. If you are blinded by that, then you are blinded
13 because you want to be blinded by that or you have been
14 told to be blinded by that.
15 Because you see us every day come in here and
16 you are telling us to show you the proof. We are the
17 living and dying proof. Thank you, gentlemen.
18 DR. LANDRIGAN: Mr. Melchor, if you are able to
19 take questions, we have a couple. If I understand
20 correctly, you were off the coast on one of the Navy
21 carriers. Right?
22 MR. MELCHOR: Right.
87
1 DR. LANDRIGAN: And your job was to use various
2 solvents to clean the planes when they would return from
3 missions?
4 MR. MELCHOR: I was sent aboard as a parachute
5 rigger though I was not an official parachute rigger. I
6 think I was sent aboard because I was a chemical warfare
7 instructor for the Air Force at one time. And when we --
8 when I first started knowing there was something wrong was
9 when we would decontaminate the wings of the airplanes.
10 The airplanes I was operating with were -- they
11 were in control of the battlefield. They were directing
12 all the flights in there, the bombings and the strafings
13 and everything that was going on in the battlefield. And
14 when they came back, we had to wipe off the wings.
15 And when we started, that is when I started
16 getting sick and I noticed the burning sensation on my
17 body -- the tingling sensation and the dizziness. That
18 right there told me there was something chemical.
19 DR. LANDRIGAN: What were you using? Do you
20 know the name of the solvent or the mix that you were
21 using to wipe down the aircraft?
22 MR. MELCHOR: No. I don't recall right now
88
1 though I know it has been brought up as a smokescreen, you
2 know, What were you using?
3 DR. LANDRIGAN: No. It is not a smokescreen
4 but it is just part of what you were exposed to I am
5 trying to get at.
6 MR. MELCHOR: Right.
7 DR. LANDRIGAN: And then when you -- what kind
8 of material --
9 MR. MELCHOR: Well, that would only last maybe
10 an hour or two, not a lifetime.
11 DR. LANDRIGAN: Okay. What kind of material
12 came off the skin of the aircraft when you wiped them
13 down?
14 MR. MELCHOR: What kind of material?
15 DR. LANDRIGAN: Did --
16 MR. MELCHOR: It was like soot or --
17 DR. LANDRIGAN: Was there stuff on there --
18 MR. MELCHOR: Yes.
19 DR. TAYLOR: I just want to ask a follow-up to
20 what has been asked by Dr. Landrigan. Were you wearing
21 any protective equipment or clothing in working with
22 solvents?
89
1 MR. MELCHOR: Not --
2 DR. TAYLOR: Gloves or any kind of respirator
3 at all?
4 MR. MELCHOR: No.
5 DR. TAYLOR: That wasn't supplied?
6 MR. MELCHOR: No. It was a spray can. We
7 sprayed it on a rag and wiped it off, is what it was.
8 DR. TAYLOR: So it was a spray can of some
9 kind.
10 MR. MELCHOR: It was not a -- like a, you know,
11 a massive amount of solvents that we were using.
12 DR. TAYLOR: Okay. Are you currently under any
13 kind of treatment, then, for your symptoms now?
14 MR. MELCHOR: I have gone to the VA but because
15 I have not been diagnosed officially, I have to pay for
16 everything. Right now I have got a -- every month I get a
17 billing from the VA that I owe them some money and plus
18 the attitude of the VA -- I don't go down there no more.
19 And it is not only me but it is thousands of us
20 don't go there because of the attitude that we are facing.
21 MR. CASSELLS: I just want to clarify that last
22 statement. Are you registered through the VA Gulf War
90
1 Registry?
2 MR. MELCHOR: I am registered to the Persian
3 Gulf Veterans' and -- Registry -- and the DOD.
4 MR. CASSELLS: Okay. And you have been through
5 the VA evaluation system?
6 MR. MELCHOR: Right.
7 MR. CASSELLS: Okay. And you have been
8 receiving bills?
9 MR. MELCHOR: Right.
10 MR. CASSELLS: From the VA?
11 MR. MELCHOR: Right.
12 MR. CASSELLS: Have you been paying those
13 bills?
14 MR. MELCHOR: No.
15 MR. CASSELLS: My understanding is that those
16 bills are, in fact, in error.
17 MR. MELCHOR: Well, in fact, I am paying them.
18 Let me clarify that. I am paying them.
19 MR. CASSELLS: You should not be receiving
20 them. We will look into that.
21 MAJOR KNOX: Joe, my understanding was if you
22 were not given a diagnosis or a VA claim pension that you
91
1 do have to pay for those after your initial Phase I
2 evaluation. Is that wrong?
3 MR. CASSELLS: I think we need to clarify that.
4 That is counter to what we have been told at a couple of
5 our site visits.
6 MR. MELCHOR: So, you know, my bills are minor
7 compared to some of those other veterans who have
8 thousands of dollars of bills accumulating. So what
9 initiative do they have to go back? And what is going to
10 happen -- and it has already happened -- a lot of those
11 people die even before, you know, they get diagnosed or
12 even before they get on the registry because they are
13 kicked out of the service.
14 And when you kick them out of the service, you
15 cut off their funding. You cut off their -- what is going
16 to happen? You really cut off their living funds. You
17 send them out to die. You put them on the -- right on
18 Schindler's List.
19 DR. LANDRIGAN: Thank you very much, Mr.
20 Melchor. Next is Staff Sgt. Paul Lyons. Mr. Lyons?
21 SGT. LYONS: I have got some handouts for you
22 all. One second, please. We will see how far these will
92
1 go and then I will hand out the rest of these others here
2 in a minute.
3 I would like to thank you all for the
4 opportunity to be here. I am active duty. As an active
5 duty soldier, I am president of a Persian Gulf information
6 network. I run a support group for Persian Gulf War
7 veterans in Tennessee. I am stationed at Fort Campbell,
8 Kentucky.
9 Being active duty, I am allowed to speak on
10 this matter due to a memorandum that was put out by the
11 Secretary of Defense dated May of 1994 which stated that
12 as a veteran of Desert Storm, that I should not feel
13 constrained in any way from discussing these issues of
14 chemical or biological exposures, which is in the handout.
15 I would also like to point out that I am
16 speaking personally for myself and as president of the
17 Persian Gulf Information Network and in no way should my
18 testimony be misconstrued to represent official policy of
19 the United States Army or DOD.
20 I come before this committee with official
21 government documentation showing that chemical agent
22 detections were, in fact, confirmed and noted by our
93
1 forces During Operation Desert Shield-Desert Storm. The
2 second document that I wish to present to this committee,
3 which is in the handout, is the daily staff journal or
4 duty officer's log.
5 What it is, it is an Army regulation. It tells
6 you how to fill out the duty officer's journal logs that
7 were used over in Desert Shield-Desert Storm to record
8 nuclear, chemical, and biological events. Well, let's
9 just say chemical-biological.
10 I obtained these logs using the Freedom of
11 Information Act from the 101st Airborne Division or
12 Assault where I am stationed. And I didn't have a chance
13 to exhibit -- mark everything as an exhibit but on the
14 first particular one, it states that the 8th Battalion
15 101st called up to the Airborne -- 101st Airborne
16 Divisions and they stated that the sirens were going off
17 in the 8th Battalion 101st area.
18 And if you will notice on what they call
19 DA-1594s, you will see that -- and I quote this -- it
20 says, "Verified by air." So when you verify a chemical
21 substance by air, that is probably, short of liquid
22 contamination by chemicals -- that is about the most
94
1 surest means you can have to confirm nerve agent.
2 Exhibit E is an intelligence report dated 22
3 January 1991 that again confirms the French detected nerve
4 agent GAGV, a blister agent in, "sub-lethal quantities."
5 The report goes on to say, "The French assessed the
6 incident to be the result of bombing of chemical agent
7 storage in Al Salman. And the source of the information
8 at the bottom of this information report which was a spot
9 intelligence report is by the French chemical NCO, the
10 noncommissioned officer who deals with that.
11 Exhibit F is an operations order from the
12 commander of the 18th Airborne Corps dated 21 January
13 1991. Page 2, Item 2 of this order states, "Corps deep
14 strike operation priorities continue to be enemy chemical
15 delivery systems."
16 Well, ladies and gentlemen of this committee,
17 if there were no chemicals over there, why would our
18 priorities be to attach enemy chemical delivery systems?
19 Exhibit I of this report -- because I -- due to
20 time constraints, I am going to just dance around them.
21 Exhibit I of this report dated 25 January 1991, Item 44,
22 which states, "From Corps G3 the 3rd Armored Cavalry
95
1 Regiment reports a one-round air burst with a yellow cloud
2 at 500 meters from the TOCP." TOCP is an acronym for
3 Tactical Operations Command Post. So in effect, according
4 to Army doctrine, if you have an air burst with a yellow
5 cloud, more than likely that is mustard agent.
6 Exhibit K dated 28 January 1991 states that
7 from G2 -- this was an intelligence report that was
8 intercepted and it plainly states in it that Saddam
9 Hussein gave authority to use chemical weapons to brigade
10 level. So once again we have to ask ourselves, if Saddam
11 Hussein did not possess chemical weapons, what are we
12 doing receiving an intelligence report stating that he
13 gave the authority to use those weapons down to brigade
14 level?
15 There is one of these other exhibits in here
16 where 1st Battalion of the 327th detected nerve agent
17 under the supervision of the chemical officer who had been
18 through chemical training school. He called in an ANBC1
19 report to 101st Airborne Division with a verified chemical
20 detection. I know my time is running out
21 so I want to hand out to the committee here something that
22 was mailed to me because I have a P.O. box running this
96
1 nonprofit organization for Persian Gulf War vets out of
2 Fort Campbell, Kentucky.
3 We meet the first Wednesday of every month at
4 the Noncommissioned Officers' Association and we really
5 appreciate them for that. But if you will notice on this
6 memorandum, it says, "Subject: Identification and
7 processing of sensitive operational records." And you can
8 see the date says, "3 November 1995," so this is very
9 recent.
10 And it goes on to state that the, "Department's
11 Secretary of Defense in ASD/HA have expressed concern
12 about potential sensitive reports or documents on Gulflink
13 that have directed -- declassifies, identifies such
14 documents and forward them to the investigation team prior
15 to release on Gulflink," which for those of you who are
16 not aware of what Gulflink is, it is a Worldwide Web site
17 on the Internet.
18 "The purpose of this procedure is not to stop
19 any declassified or unclassified documents from going on
20 Gulflink but to allow the investigation team time to begin
21 preparation of a response on particular" -- and I quote --
22 "bombshell reports. These responses could be provided to
97
1 Dr. White and Dr. Joseph for use in response to White
2 House inquiries."
3 "Item 2. Realizing that a fair amount of
4 judgment must be exercised by your reviewers in this
5 process, request you task your teams to use the following
6 criteria in selecting sensitive documents."
7 "A. Documents that could generate unusual
8 public/media attention."
9 "B. All documents which seem to confirm the
10 use or detection of nuclear, chemical, or biological
11 agents."
12 "C. Documents which make gross startling
13 assertions, i.e., A pilot's report that he saw a giant
14 cloud of anthrax gas."
15 "D. Documents containing releasable
16 information which could embarrass the government or DOD.
17 Statements as, We are not to bring this up to the press,
18 fit this category."
19 "E. Documents which shed light on missions
20 which have high levels of media interest, such as the
21 November 1995 "Life" article on birth defects among Gulf
22 War veterans' children. All such reports should be
98
1 flagged for investigation team and sent directly to them
2 by the fastest means available, e.g. -- example given --
3 e-mail, fax, mail, or even a personal courier."
4 "3. The investigation team will make two
5 determinations on each flagged record. One will be
6 whether or not the subject requires further research and
7 the other will be who, if anyone, would receive the
8 results of the research. As soon as these steps are
9 expedited, the investigational team will notify the
10 operational declassifier they have completed their part of
11 the process and that the document can be forwarded to DTIC
12 for placement on Gulflink."
13 "The investigation team will also notify the
14 declassifiers when particular incidents or units are no
15 longer considered potentially sensitive. In those cases,
16 the declassifiers should stop flagging or highlighting
17 reports on that incident or unit. The results of the
18 investigation teams' investigations ultimately will be put
19 on Gulflink," or so this memorandum does state.
20 "You are requested to ensure that your
21 declassifiers follow the former standards of review re:
22 the action and release of health-related operational
99
1 records. This will ensure that there is some consistency
2 in operational records of the services and commands that
3 are being made available to the public on Gulflink. It
4 also facilitates the use of forward and privacy exemption
5 codes in the redaction of documents."
6 And this is signed off by a Mr. Paul L. Boyer
7 who I -- this came to me through the mail. I don't have
8 any idea who sent it to me but I will tell you what. I
9 would like for you all to look into this if you could
10 because this sounds like a cover-up if I have ever seen
11 one. They are telling them what they can screen, what
12 they cannot screen.
13 I am not wearing these sunglasses because I
14 want to be Mr. Hollywood. I have developed
15 photosensitivity. I cannot even drive at night any more.
16 I am usually at home in bed but I made it to this trip
17 because I -- this is my swan dive.
18 DR. LANDRIGAN: Thank you for coming and thank
19 you for these --
20 SGT. LYONS: One other point, sir. If you will
21 notice in the distribution of that, you will see who all
22 is to receive it. It says, "Chief of Military History."
100
1 Joint chiefs of staffs are to receive this all the way up
2 to the Chairman, Director of Naval and Historical Center,
3 Director of U.S. Marine Corps Historical Center, Air Force
4 Declassification and Review Team."
5 This document needs to be examined and it needs
6 to be examined thoroughly. There is a lady who -- she was
7 an American poet and she said something once. And I have
8 wrote it down because I think that it makes a lot of sense
9 to me and I am not one to, after serving my country, want
10 to come up here and, you know, fight the system.
11 I love the Army. Okay? I have got over 13
12 years total federal service and I didn't ask for this to
13 happen to me. I wanted to retire but let's get this
14 straight. But her words rang so true to all of us that I
15 wanted to say this because it is -- her saying is, "To sit
16 in silence when one should protest makes cowards of men."
17 And that was by Ella Willard Wilcox and she was an
18 American poet. And I think those words ring true today.
19 Thank you.
20 DR. LANDRIGAN: Thank you, sir.
21 SGT. LYONS: I am prepared for questions if you
22 have any.
101
1 DR. LARSON: Thank you for coming so well-
2 prepared. It is very helpful to have all the
3 documentation. We appreciate it.
4 SGT. LYONS: You are welcome, ma'am.
5 DR. LARSON: I just have one question about
6 this last memo which we have not seen.
7 SGT. LYONS: Yes, ma'am.
8 DR. LARSON: There is no date on it. There is
9 a stamped date but do you know when this was distributed?
10 SGT. LYONS: No, ma'am. I really don't other
11 than that stamped date and then -- let me just state this.
12 I am having a hard time thinking. In a lot of inter-
13 office memos, that format will be used rather than an
14 official date.
15 Now, I don't know how -- that was mailed to me,
16 I tend to think, by someone who probably had seen what was
17 going on and didn't like what they saw. And I don't know
18 who else has received this other than me. Okay? It came
19 to my mailbox. I am running a nonprofit organization out
20 of Tennessee known as the Persian Gulf Information
21 Network.
22 This came to me with no return address or
102
1 nothing but I will tell you this. Please look into it.
2 DR. LANDRIGAN: We shall. Thank you.
3 SGT. LYONS: Anything else from anyone?
4 MAJOR KNOX: I have a question. Sgt. Lyons,
5 are you still on active duty?
6 SGT. LYONS: Yes, ma'am. I am.
7 MAJOR KNOX: And in your opinion, have you had
8 difficulty in expressing your symptoms or do you feel like
9 that you have been punished for that?
10 SGT. LYONS: Well, ma'am, it is like a lot of
11 these people have said here, you know. We -- at first, I
12 didn't want to admit that something was wrong with me and
13 I used to be a pre-air assault instructor and do the five
14 mile a day run and --
15 MAJOR KNOX: Right.
16 SGT. LYONS: -- bring everyone through air
17 assault school once a week and make sure that everyone
18 qualified and, you know, I basically put the Army ahead of
19 me because that was what I was trained to do. I didn't
20 ask anything for me, just the Army standards was what I
21 stood for and still do, as the best I can.
22 And I still have soldiers come up to me today
103
1 and say, Sgt. Lyons, I am sick with this or I am sick with
2 that. And I will ask them -- and they are active duty --
3 Have you put yourself on the registry yet? And they say,
4 No. And I say, Why not? And they say, Because it is a
5 death kill to your career.
6 I say, Look. You are going to have to draw the
7 distinction just like I had to. What is more important,
8 your health or your career?
9 And that is exactly what these soldiers are
10 going to have to do. But I tell you what. If they are
11 looking at it from the point of view that their career is
12 stigmatized by being on the registry, DOD needs to address
13 that and calm these people's fears that they are not going
14 to be put out of the Army if they get signed up on the
15 registry.
16 I have got a lot of sick soldiers that have
17 told me this. They are scared to register.
18 MAJOR KNOX: Do you know of any who have been
19 put out of the Army because they signed up for the
20 registry?
21 SGT. LYONS: Yes, I do. Yes, I do. Basically
22 railroaded out. How does that sound?
104
1 SGT. LYONS: Are there any other questions from
2 this honorable committee?
3 DR. LANDRIGAN: I think not. And thank you
4 very much, Sergeant, for coming before us this morning.
5 SGT. LYONS: Yes, sir. I am more than glad to
6 make it here.
7 DR. LANDRIGAN: Next, we have Ms. Betty
8 Zuspann.
9 MS. ZUSPANN: Thank you for allowing me to come
10 and speak today. Please forgive me if I get a little
11 hoarse or something. You might want to ask me later. I
12 suffer from actual Gulf War Syndrome. I was exposed to a
13 contaminated Iraqi map that came out of a bombed bunker
14 that was given to me and I was -- almost died and have
15 been ill ever since. And later on if you would like to
16 ask me about that, since I only have five minutes, I would
17 appreciate it.
18 I represent a wive's working group that has
19 been working since the Spring of 1992 of wives of veterans
20 who are very sick with Gulf War illnesses at the time. We
21 were trying to get some assistance from the Bush
22 administration. My husband was on the USS New Orleans
105
1 with his ship, the Midway.
2 My husband's ship was five miles off the coast
3 of Kuwait. For seven months, my husband's ship chartered
4 through burning oil derricks in the water. My husband's
5 ship was attacked by chemicals from Saddam Hussein when he
6 opened the oil pipes and let the oil spill out into the
7 Gulf. That is chemicals. I consider that a chemical
8 attack on my husband's ship, the USS New Orleans, and
9 George Bush did nothing about it.
10 My husband's ship and others floated on this
11 oil spill for seven months. My husband's ship volunteered
12 to go in and chart a course through these burning fields
13 and mines. To chart a course so that the other ships
14 could come in without getting blown up. They volunteered
15 to do this after the Tripoli was hit and had to be put
16 into dock.
17 My husband's ship was also docked at Bahrain,
18 Abu Dabi, and Dubai. While at Bahrain, they were under
19 SCUD missile attack. Mr. Vic Silvester's son was witness
20 to that attach. He was on the dock that night that the
21 SCUD missile went over MACH 4.
22 The alarms went off. My husband and 230 of his
106
1 crew members were asleep downstairs. They called general
2 quarters. My husband's crew never had MACH gear, ever,
3 while serving in the Persian Gulf. Yet they were in oil
4 fires for seven months.
5 They were on the oil spill. They ingested oil-
6 infested water. They cooked with it. They showered in
7 it. I have a copy of the Navy report that you have that
8 is dated 1992. You mentioned it in your interim report.
9 I also have the original copy dated 1991 of February, when
10 they had a meeting in Ohio -- Dayton, Ohio, with oil
11 people and scientists on what types of problems that the
12 Navy Department would have with sick people coming back
13 from the Gulf as a result of exposures to the spill, the
14 fires, and the other contaminants out in the Persian Gulf.
15 Radiation was a big concern because of the
16 tanks that held a lot of the chemicals and unrefined raw
17 unprocessed oil in the refineries that were blown up
18 because the tube -- the levels of tubes -- it is in the
19 report. You have read it. You have mentioned it. That
20 when they blew up the tubes, when the planes bombed the
21 factories or Saddam blew up the refineries or whatever,
22 that the radiation that was in those level tubes in those
107
1 storage tanks and refineries would spread radiation and no
2 one would no where this radiation would dissipate -- and
3 the thousands of other things that were in that report.
4 And this is not the original copy but this is a
5 copy I was given in Washington while my husband was in
6 Walter Reed in 1992. It was pulled out of a -- the other
7 copy was pulled out of a desk drawer at the Pentagon and
8 was shuffled out and given to us because my husband had
9 been asked to come forward by the American Legion and to
10 be a whistle-blower on the fact, at that time, in Spring
11 of '92, that there was a Gulf War problem and that they
12 were trying -- soldiers were calling in but they weren't
13 coming forward.
14 So I have been involved in this actively, like
15 Vic Silvester and others, since 1992. My husband has Gulf
16 War Syndrome. He has chemical sensitivity. I can tell
17 you he has chemical sensitivity because I live with it
18 every day. I do the IVs. I clean out the respirator. I
19 hang the IVs. I clean the air purifiers. I sit with him
20 night and day while he gasps for air. I am the one that
21 has to fight off the half a million dollars worth of
22 medical bills when the doctors and bill collectors call me
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1 wanting their money because the VA won't pay the bills.
2 The VA -- I have not had respite care or home
3 health in four solid years. I don't mean to cry. I
4 just -- these wonderful people served this country and
5 I -- they don't deserve what they are getting. And I am
6 asking President Clinton to please give them their dignity
7 back.
8 They fought for this country and I am telling
9 you whether it was oil, whether it was sand or chemicals
10 in the sand, dusty mustard -- I don't care what it was.
11 These people are injured. They were attacked. And I
12 watched yesterday on C-SPAN the commemoration of those who
13 died.
14 Colin Powell was there. He stood up and gave a
15 wonderful little speech about the poor people who died.
16 And I feel sorry for them and I feel sorry for their
17 families. They don't have to suffer like we have to
18 suffer and I feel sorry for them. And their pain is a lot
19 because their family member isn't here.
20 But I have to be honest with you. Sometimes I
21 wish Garry had died in the Gulf. He would have been
22 treated a lot better by this government if he had of. If
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1 they had brought him home with a flag on his casket, we
2 would have been treated a lot better than we have been
3 treated in the last four years by the Department of
4 Veterans' Affairs and the Department of Defense.
5 Walter Reed was an absolute nightmare. I am
6 not going into it other than to say that the doctors there
7 kept wanting him to get up, go home, and get a job. This
8 is a man who is six-four, weighed 126 pounds. Looked like
9 he had just come out of Auschwitz. Couldn't eat.
10 Diarrhea. Vomiting blood.
11 Know what they said to him? You are taking up
12 an AIDS-patient's bed. Why don't you get up, get over it,
13 and get a job. My husband has heart damage -- flexed
14 valve in his heart. His lung muscle tissue is
15 depleting -- wasting away. He has brain damage. He
16 bleeds through the eyes. He bleeds through the pores. He
17 bleeds through the gums.
18 I could go on and on and on. He has got
19 intestinal damage, stomach damage. He is in a wheelchair.
20 That complete clanging of that respirator every night and
21 that heart monitor going off all the time and that apnea
22 monitor going off all the time and that gasping for air.
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1 I live it every day.
2 I can tell you, my husband has Gulf War
3 Syndrome and chemical sensitivity and anything else you
4 want to call it. And he is going to die from it. That is
5 a fact I have to deal with. But his comment is, They may
6 have killed me but they ain't laid me down.
7 And I would like to address something --
8 several things if you would give me just one more minute,
9 please.
10 DR. LANDRIGAN: We need to be courteous to the
11 other witnesses.
12 MS. ZUSPANN: Yes. The Department of Defense
13 wrote me a letter. The Department said, Yes. Your
14 husband has Gulf War Syndrome. Yes, he has chemical
15 sensitivity. And yes, he has asthma. And yes, he got it
16 in the service. Yet I can't get the medical
17 bills paid or nothing. The statistics -- you can get
18 those. They are real easy. I will tell you how to get
19 them, Wendy. They gave me the death statistics on Friday.
20 This very last Friday they gave those to me.
21 They also gave me how many Persian Gulf
22 veterans are service-connected right now, this minute.
111
1 And that is all I want to do is read those numbers, if you
2 don't mind, if you will allow me. They are called
3 Washington, the Bureau of Statistics at the Department of
4 Veterans' Affairs.
5 And people can argue whether it is a broken toe
6 or whatever. That is not my problem. These are the
7 Persian Gulf veterans who actually are service-connected
8 or pension at the Department of Veterans' Affairs as of
9 two o'clock on Friday: 142,945 are on disability
10 compensation rolls. Disability pension is 262. Total of
11 143,207. Deaths, 3,398. Pension deaths, 55.
12 I asked them how many death claims were
13 pending. They would not tell me. They said they also had
14 separately, for some reason, environmental hazard claims
15 pending, 6,553. Additional environmental claims
16 processed, 8,508. This does not include the 60,000 or
17 whatever the number is now of Persian Gulf-ers just
18 sitting on the registry without a diagnosis. I think that
19 is -- what, 60,000, something like that -- which would
20 bring that total around to 221,721.
21 If anybody wants to look up how many women
22 served in the Persian Gulf, I know that 18,000 service --
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1 women are service-connected as of today -- as of Friday
2 the 23rd.
3 DR. LANDRIGAN: Ms. Zuspann, I must ask you to
4 wrap it up. Thank you very much.
5 MS. ZUSPANN: And I am finished.
6 DR. LANDRIGAN: Thank you.
7 MAJOR KNOX: Ms. Zuspann, can you provide us a
8 copy of that?
9 MS. ZUSPANN: That is all going to Washington.
10 I didn't figure you all wanted to take it home with you on
11 the plane. Yes.
12 DR. LARSON: Just to clarify. Your husband has
13 been diagnosed with Gulf War Syndrome and multiple
14 chemical sensitivities that has been identified as being a
15 result of his service and you can't get your bills paid?
16 MS. ZUSPANN: No, ma'am. I can't. The Navy
17 says it is the VA's responsibility. The VA says it is the
18 Navy's responsibility and we go back and forth.
19 DR. TAYLOR: This is with a confirmed diagnosis
20 from a physician?
21 MS. ZUSPANN: Several physicians. The
22 Department of Veterans' Affairs, Houston; civilian
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1 physicians -- well, now the Department of the Navy Bureau
2 of Medicine. I have a letter from them saying he has
3 asthma, chemical sensitivity, and Gulf War Syndrome, they
4 regret to tell him. Thank you.
5 DR. LASHOF: Is he on disability from the VA,
6 then?
7 MS. ZUSPANN: Yes, ma'am. He is. But they
8 tell me they can't provide him medical care because if
9 they treat him for chemical sensitivity they will have to
10 treat the rest of him and they are not going to do it.
11 DR. LANDRIGAN: Thank you. Next we have Mr.
12 Charles Townsend.
13 MR. TOWNSEND: Madam Chairman, distinguished
14 members of the committee, ladies and gentlemen. My name
15 is Charles Townsend. I am a Gulf War veteran who has been
16 seeking government medical assistance for the past three
17 and a half years.
18 My experience with the government medical
19 system has ranged from supportive to being called a liar
20 by doctors at the VA about my physical symptoms that I had
21 told them about. From January 1992 to present, literally
22 and figuratively, all of my medical care has been from
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1 Dallas and Houston VA medical centers.
2 My frustrations with the medical systems of the
3 VA, the lack of so-called compassion that we and the
4 general public are continually being told is the goal of
5 the VA medical system -- it may well be placed in
6 perspective with the comments of the head of the regional
7 Persian Gulf center in Houston VA.
8 This gentleman comments -- I use the word
9 gentleman questionably -- this gentleman's comments in
10 regards to the Persian Gulf and the Vietnam Agent Orange
11 situation was both derogatory and mocking in nature. It
12 was an affront to me as a veteran and all who answered the
13 call of duty.
14 Increasing medical problems identified by
15 various Persian Gulf registry medical exams -- of which I
16 have had four -- C&P exams, VA doctors' examinations
17 resulted in my request to be examined at the Houston
18 referral center. Results of these exams and lack of
19 official medical records from my eight months of service
20 in the Persian Gulf starting in late August of 1990 have
21 resulted in the denial of any service connection
22 determination.
115
1 Three straight Persian Gulf service connection
2 denials have resulted in all of the findings of the Dallas
3 and Houston VAs. Repeated requests for medical records of
4 the months that I was stationed in the Gulf to the VA from
5 various NSOs of various service organizations throughout
6 the years have resulted in several times the VA requesting
7 my medical records from that period and the latest one
8 being in November of 1995.
9 Yet the adjudication of my claim -- my prior
10 claim was at the end of January of '96. Of course, I was
11 denied. As we all know, there were several government
12 shut-downs as well as fall and winter holiday schedules
13 that restrict workload capabilities during this time
14 frame.
15 The particular claim was received by the
16 Persian Gulf claim processing center when it was located
17 in Nashville, Tennessee in September of 1994. The claim
18 center was closed down and my claim and files were
19 transferred to Louisville, Kentucky in January of 1995.
20 My claim continued through the process. And as I
21 mentioned earlier, the request for service medical records
22 was in November of 1995. And the claim was adjudicated in
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1 late January of 1996.
2 The paperwork trail for the past four years as
3 a Gulf War veteran has been a nightmare. Lost records.
4 Non-responses to medical requests. A great variation in
5 the -- and great variation in the professional medical
6 opinions between VA doctors and the downgrading of
7 examining doctors' opinion in front of patients by other
8 doctors has resulted in distrust of the system.
9 Members of the committee, the end result is
10 this. The fact that not only do I not receive service
11 connection for my medical problems as resulted from my
12 medical service in the Persian Gulf but as of now -- but I
13 have now, as have many others, developed a distinct
14 distrust for the majority of the medical professionals of
15 the VA medical community.
16 Members of the committee, ladies and gentlemen,
17 I thank you for this opportunity to address this
18 distinguished group and I would like to leave you with
19 this one thought. I spent the last 25 years contributing
20 to the defense of this nation and the various communities
21 that I have lived in.
22 I have one simple goal. To return to that
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1 capability and once again become a viable contributing
2 member of the community that I love, that is, the United
3 States of America. Thank you.
4 DR. LANDRIGAN: Questions for Mr. Townsend?
5 MR. TOWNSEND: Please ask me who these people
6 are that are saying such nasty things. After all, they
7 are medical VA doctors.
8 DR. LANDRIGAN: Please give it to us so that we
9 can take it with us.
10 MR. TOWNSEND: Pardon me?
11 DR. LANDRIGAN: Say them now if you would like
12 but also leave us something if you have their names
13 written down.
14 MR. TOWNSEND: On my person, I have my diary
15 that I kept in the five weeks that I was at the Persian
16 Gulf -- it is curious that the original Persian Gulf
17 referral center head in Houston was kicked upstairs and
18 the person who replaced him was the one that made the
19 comments that I alluded to.
20 And essentially he stated, "The Persian Gulf
21 Syndrome is exactly like the Agent Orange thing. I
22 believe that not one penny should have ever been paid to
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1 anyone for a claim of Agent Orange because at no time has
2 there ever been any scientific proof that the herbicide
3 harms human beings."
4 So the current head of the Persian Gulf
5 regional center in Houston doesn't believe in the job that
6 he is assigned to do. His name is Dr. Gorin. There is a
7 Dr. Gorin representative here because Dr. Gorin didn't see
8 fit to be here. So he sent a PA by the name of Susan
9 Killian who is in the audience.
10 DR. LANDRIGAN: Thank you.
11 MAJOR KNOX: What VA is that?
12 MR. TOWNSEND: Houston VA, which is the
13 regional center for this area -- for the referrals of VAs
14 who are not -- who do not know what is going on with the
15 vets. I had four Persian Gulf registry exams. What
16 they -- what the --
17 DR. LANDRIGAN: I am sorry. I can't let you go
18 on. We have to -- there are other witnesses but I will
19 glad to take questions from the panel. Okay. Thank you
20 very much, Mr. Townsend. Our last public witness now is
21 Ms. Joyce Riley. Ms. Riley, please.
22 I am sorry. There is no intent here to be
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1 disrespectful but we have a full panel of witnesses. We
2 have to respect each the time of the other. And we invite
3 any witness and also any other member of the public who is
4 here to submit any material in writing. It will be given
5 careful consideration.
6 MS. RILEY: My name is Joyce Riley. I served
7 with the 32nd AES in Kelly. I was a flight nurse. I was
8 in the Gulf War. However, I did not go to the theater of
9 operations. I was sick within six months after coming
10 back from the Gulf War.
11 The only thing I have in common with the rest
12 of the Gulf War veterans is that I received the
13 immunizations. I was quite ill. As you can see, I had a
14 multifocal central nervous system disease. It was never
15 determined why it was caused and it was a demyelinating
16 disease.
17 I served with the 32nd AES as a captain, flight
18 nurse only for about six months. I can assure you
19 biologicals and chemicals were used. I won't go into the
20 proof for this. I have been collecting it for over a
21 year. Biologicals and chemicals were used on our troops.
22 They were made in the United States -- Houston, Boca
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1 Raton, and Maryland.
2 We will prove this with or without the DOD's
3 help, with or without the Pentagon's help, and with or
4 without the Presidential Advisory Committee's help. It is
5 tantamount to crimes of treason and trading with the enemy
6 and silence truly is consent.
7 I have a radio talk show in Houston and we are
8 continuing to get this word out throughout the United
9 States. Biologicals have been used on our troops. Our
10 men and women are sick and dying. There is no question
11 they are sick and dying. I am going to give away the next
12 few minutes of my time to a song that has been written by
13 Dave Ruddell.
14 Dave Ruddell has a radio talk show in
15 Connecticut. He wrote the song, "Where are the Voices
16 that Care?" It is dedicated to all of you who are sick,
17 who are dying, and all of your family members. This song
18 is available free of charge to all Gulf War veterans.
19 America, we do know the truth.
20 (Pause.)
21 MS. RILEY: There are some audio tapes in the
22 back and there will be some information for the Gulf War
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1 veterans. America, we must not forget. Are there any
2 questions?
3 DR. LANDRIGAN: Thank you, Ms. Riley. Any
4 questions for Ms. Riley?
5 DR. LARSON: I just have one question. You
6 said you have some evidence that you are collecting about
7 the chemical and biological warfare and it would be very
8 helpful for us to have that.
9 MS. RILEY: Certainly. I have a packet of
10 information I will be providing you now and more later.
11 DR. LARSON: Great. Thank you.
12 DR. LANDRIGAN: Thank you. All right. Well,
13 this concludes the public testimony. I have one or two
14 other folks that had asked if they could be heard and I
15 would like to be able to do so but we are already past
16 time and we have Dr. Claudia Miller due to come on now.
17 What I will try to do is if anyone -- we will
18 try to make some time at the end of the afternoon but I
19 realize that gets raggy towards the end because it is the
20 end of the day. But we have to stick to the schedule
21 because we do have other speakers on.
22 I repeat the earlier offer. Anyone who has any
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1 material that they wish to submit us in writing -- and
2 that could be supplement to oral testimony or material
3 which is just submitted -- we will gladly receive it and
4 give it careful consideration.
5 So now we will change gears and switch over to
6 the first of the medical presentations. And this will be
7 a presentation by Dr. Claudia Miller from the University
8 of Texas Health Center here in San Antonio and she will
9 speak on multiple chemical sensitivity.
10 DR. MILLER: Thank you for the invitation to
11 address your committee. Over the past three years, I have
12 served as consultant to the Department of Veterans'
13 Affairs Regional Referral Center for Persian Gulf War
14 Veterans in Houston, Texas. I have also served on the
15 Department of Veterans' Affairs Persian Gulf Expert
16 Scientific Committee since its inception.
17 I am boarded in allergy and immunology and
18 internal medicine and have authored or co-authored
19 approximately 20 scientific publications on multiple
20 chemical sensitivity or MCS.
21 There is a growing sense of urgency among
22 physicians, scientists, and the public about chemical
123
1 sensitivity and the need to define it and understand it.
2 Several factors have contributed to this sense of urgency.
3 First, increasingly, private and academic physicians are
4 reporting MCS or features of it in their patient
5 populations which include Gulf War veterans.
6 Secondly, MCS appears to be associated with
7 severe and protracted disability in a large percentage of
8 cases.
9 Third, the societal costs of MCS in terms of
10 lost productivity, medical bills, compensation claims, and
11 litigation are huge. 40 percent of 112 MCS patients we
12 surveyed reported having seen ten or more healthcare
13 practitioners. While 80 percent reported working full-
14 time prior to their exposure, at the time of our survey
15 which was on average seven years later after their
16 exposure, 80 percent said they were unable to work or
17 could only work part-time.
18 The majority of MCS patients appear to be
19 credible individuals -- schoolteachers, mechanics, nurses,
20 lawyers, technical staff at the Environmental Protection
21 Agency, and soldiers with good prior work records who
22 report major deterioration in their health and ability to
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1 function following an identifiable exposure to chemicals.
2 Multiple chemical sensitivity has been
3 attracting increasing scientific interest over the past
4 few years. A number of federal agencies including the
5 National Research Council, the Agency for Toxic Substances
6 and Disease Registry, the Environmental Protection Agency,
7 and the National Institute of Environmental Health
8 Sciences have sponsored workshops on MCS.
9 In addition, a federal interagency working
10 group on MCS has been formed. Two days ago, I returned
11 from a World Health Organization workshop on MCS held in
12 Berlin, where clinicians and scientists from the United
13 States, Canada, and Europe formulated policy and research
14 recommendations.
15 Because of the current lack of scientific data
16 on MCS, participants accorded a high priority to research.
17 In particular, double-blind placebo-controlled challenge
18 studies to distinguish psychogenic from toxicogenic
19 responses were deemed essential and urgent in order to
20 define the nature and origins of these patients'
21 environmental intolerances so that effective treatment,
22 public health protection, and policies can be developed
125
1 and implemented.
2 Chemical sensitivity is a complex phenomenon
3 that cannot be addressed adequately in the short time
4 available today. Given the importance of this problem in
5 the eyes of many Gulf veterans, other patients, and
6 scientists, I hope your committee will consider devoting
7 more time to it at a later meeting. It is one of the few
8 mechanistic hypotheses that offers a plausible link
9 between the Gulf veterans' illnesses and environmental
10 exposures.
11 In this presentation, I will focus on three
12 points.
13 First, there are striking similarities between
14 MCS and the unexplained illnesses of the Gulf War
15 veterans. Second, neither MCS nor the
16 veterans' illnesses constitute a specific syndrome nor are
17 they explainable by any currently known mechanism for
18 disease. However, the similar phenomenologies of both
19 conditions suggests that a new mechanism -- new general
20 mechanism or theory for disease involving chemically
21 induced loss of natural tolerance could be operative.
22 This theory of disease has been called, "toxin-induced
126
1 loss of tolerance."
2 Third, carefully conducted scientific studies
3 will be needed to determine whether chemical intolerances
4 explain the symptoms of MCS patients and/or Gulf veterans.
5 Such research will require that double-blind placebo-
6 controlled challenges using chemical at concentrations
7 encountered in normal daily living be used to challenge
8 patients to test them while they stay in a specially
9 designed hospital research unit, a so-called Environmental
10 Medical Unit.
11 Could I have the first slide? This graph --
12 this cartoon, if you will, depicts the two-step process
13 that has been described for chemical sensitivity. First,
14 exposure of a susceptible individual -- we don't know what
15 constitutes susceptibility any more than we know what
16 constitutes susceptibility for something like
17 anaphylaxis -- to low level -- to an initiating exposure
18 event which may be combustion products, solvents, air in a
19 sick building or medications.
20 Subsequently, loss of specific tolerance in
21 that individual so that in subsequently low-level
22 exposures -- a variety of types ranging from fragrances to
127
1 solvents to traffic exhaust -- may trigger symptoms in
2 that sensitive individual. And here as physicians, we
3 look at the symptoms we are presented with clinically and
4 try to render a diagnosis based upon those symptoms,
5 perhaps not being aware of what has gone on previously.
6 This, I want to emphasize, is a theory for
7 illness that has been called, "toxin-induced loss of
8 tolerance." Masking here, which sort of obfuscates all of
9 the prior processes, really amounts to the overlapping
10 symptoms that people may experience if they have multiple
11 sensitivities to many different common exposures. And if
12 they have multiple sensitivities, those symptoms will
13 overlap in time and they may not be able to determine that
14 one particular exposure is causing problems in the face of
15 so much, let's say, background noise.
16 Briefly, chemical sensitivity appears to entail
17 two steps which outwardly resemble those that occur with
18 allergic sensitization but do not involve the same
19 mechanism. First, induction of sensitivity as we talked
20 about Step 1 there on the picture. And Step 2, triggering
21 of sensitivities.
22 The inducing or initiating exposure, as I said,
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1 may be any of a wide variety of exposures and it may be
2 acute as in a chemical spill, intermittent as in many
3 industrial exposures, or chronic as in a sick building.
4 Loss of tolerance appears to occur as a consequence of
5 this initial exposure.
6 Subsequently, extremely low levels of
7 chemicals -- levels that do not bother most people and
8 were never a problem for that individual before -- trigger
9 symptoms. The veterans' health complaints resemble those
10 of chemical sensitivity patients when these patients first
11 became ill, before they were aware of any relationship
12 between their symptoms and exposures.
13 In the earliest stages of their illness,
14 chemical sensitivity patients often report flu-like
15 symptoms that do not go away. They frequently receive a
16 diagnosis of chronic fatigue syndrome. Later, they say
17 that specific exposures trigger their symptoms. They may
18 not become aware of this until another individual or
19 physician points this possibility out to them and they
20 undertake a trial of avoidance and re-exposure.
21 In addition to their sensitivity to specific
22 inhalants, individuals with this problem frequently report
129
1 intolerances to various medications and foods and may also
2 report intolerances for alcoholic beverages, caffeine, or
3 tobacco.
4 In the early stages of their illness, they may
5 be unaware of any specific food intolerances and may only
6 report abdominal discomfort, bloating, diarrhea, extreme
7 fatigue, or other symptoms after meals. Only by testing
8 one food at a time do MCS patients say they were able to
9 learn which particular foods they could no longer
10 tolerate.
11 In 1989, I co-authored a report on MCS for the
12 New Jersey State Department of Health. The report
13 identified four groups in which chemical sensitivities had
14 been described: industrial workers, sick building
15 occupants, persons living in contaminated communities
16 around super fund sites, for example, and individuals with
17 heterogeneous personal exposures to drugs, pesticides, or
18 other substances.
19 Subsequently, we conducted a questionnaire
20 survey on MCS. Responses of 37 patients who reported
21 developing this problem following an organophosphate or
22 carbamate exposure and 75 who reported onset of MCS
130
1 following exposure to air contaminants associated with
2 remodeling of a building were compared with those of 112
3 age-, gender-, and education-matched controls.
4 Later, the same questionnaire was administered
5 to the first 59 consecutive Gulf veterans referred to the
6 Department of Veterans' Affairs' Houston Regional Referral
7 Center for comprehensive evaluation. Eight symptom scales
8 were derived via factor analysis and were compared for the
9 four groups.
10 Striking similarities were seen with most of
11 the veterans' responses, which are in the yellow bars
12 here, falling between those of the two MCS groups. The
13 blue bars are people who said they developed chemical
14 sensitivity after an organophosphate or carbamate
15 exposure. The purple, after remodeling of a building.
16 These are the matched controls for the two MCS
17 populations.
18 The scales here related to muscle-related
19 symptoms and these are factor analysis scales. Head
20 related symptoms such as headache, cognitive difficulty
21 such as memory and concentration problems, affective
22 problems -- either depression or irritability or anxiety,
131
1 heart related problems like palpitations, gastrointestinal
2 difficulties, digestive difficulties, airway problems,
3 breathing difficulties, and neuromuscular complaints.
4 And the symptom severity scale went from zero
5 to 30. And you can see where people lay on those scales.
6 These are the means for each of those groups. Similar
7 ordering in terms of overall severity was seen from the
8 scales of the veterans' groups and the two MCS groups.
9 The Department of Veterans Affairs' Houston
10 Regional Referral Center has assumed a leadership role in
11 recognizing the importance of obtaining comprehensive
12 exposure histories in evaluating veterans -- to my
13 knowledge, this is the only VA doing this -- and in
14 helping veterans understanding the current controversies
15 in the medical profession concerning MCS. You heard from
16 some of the patients that I have seen earlier.
17 While taking detailed histories on almost 100
18 veterans, I have learned that the majority report new
19 intolerances since the Gulf War. Most patients do not
20 routinely report such intolerances to a physician even if
21 they have them. Generally, they will focus on describing
22 symptoms like headache or confusion.
132
1 Further, if they were to say they had trouble
2 concentrating or felt nauseated while driving, it is
3 unlikely that they or their physicians would entertain the
4 notion that the symptoms might be triggered by exposure to
5 traffic exhaust and yet that is exactly what MCS patients
6 report.
7 Physicians need to ask patients about new
8 chemical, food, and other intolerances and not expect
9 patients to volunteer such information. This is a
10 breakdown of the kinds of intolerances reported by the
11 veterans -- the first 59 seen at the Regional Referral
12 Center. And this was before much had been in the press
13 about chemical sensitivity.
14 Chemical inhalants were reported to cause
15 problems in 78 percent. For example, former mechanics who
16 said they used to enjoy the smell of engine exhaust and
17 literally bathe in solvents without any difficulty now
18 report severe symptoms with these exposures since the war.
19 In addition, 78 percent reported new
20 intolerances to foods since the Gulf War. 40 percent of
21 those who had taken medications reported one or more
22 adverse drug reactions. 66 percent of those who used
133
1 alcoholic beverages reported that even a small amount --
2 for example, one can of beer -- made them feel ill. And
3 25 percent of those who used caffeine reported they felt
4 ill if they drank coffee or another caffeinated beverage.
5 This is a Venn diagram to show the overlaps of
6 these various intolerances -- drug intolerances of various
7 kinds, chemical inhalants, and foods. And you can see
8 that the majority -- in fact, 61 percent of the veterans
9 we have seen report intolerances in all three categories
10 that are new since the war. And 88 percent reported
11 intolerances in one or more of those three categories.
12 Neither MCS nor the veterans' illnesses fulfill
13 criteria for being a syndrome; that is, a constellation of
14 symptoms that form a picture of a disease. Nor does the
15 phenomenology of MCS or the veterans' illnesses fit that
16 of any known medical or psychiatric disease.
17 On the other hand, certain observations suggest
18 that MCS and the Gulf veterans' illnesses could have an
19 organic basis. These observations include:
20 Number One. The demographic diversity of
21 groups who have reported similar problems following an
22 exposure event -- as I mentioned, office workers, people
134
1 exposed to pesticides in their home, and now the Gulf
2 veterans.
3 The temporal cohesiveness between onset of
4 these multiple intolerances and an exposure event.
5 Number Three. The internal consistency in
6 these patients reporting not only intolerances to airborne
7 chemicals but also to various foods, drugs, caffeine, and
8 alcoholic beverages including things that they used to
9 enjoy eating, like having a beer once in a while or having
10 some pizza.
11 And fourth, the observation that many MCS
12 patients who have avoided problem chemicals and foods
13 report marked improvement or even resolution of their
14 symptoms. Historically, new theories of disease have
15 arisen when physicians observe patterns of illness that
16 did not fit accepted explanations of disease in their
17 time, for example, the germ theory or the immune theory of
18 disease. Likewise, illness under discussion here do not
19 conform to current accepted explanations for disease or
20 toxicity.
21 Objections to chemical sensitivity have
22 included concerns that too many different chemicals are
135
1 involved and have been said to cause it. Patients report
2 too many symptoms involving any and every organ system,
3 that there is no known physiological mechanism to explain
4 it, that no biomarker for it has been identified, and that
5 total avoidance of chemicals is impractical. These are
6 some of the common objections that we hear to chemical
7 sensitivity.
8 Theories of disease attempt to explain what is
9 going on inside a black box, if you will -- the patient --
10 prior to overt illness, as illustrated here. Exposure to
11 an agent of some kind, the individual who is exposed
12 develops some kind of response.
13 A theory of disease, I should emphasize, is a
14 yet-to-be-proven general mechanism for a class of
15 diseases. This is by no means established. It is a
16 theory. For the germ theories of disease, the boxes
17 depicting the general mechanism of infection look
18 something like this, of course, exposure to a germ,
19 reproduction of those, and then transmission to a second
20 host.
21 Here we see that many different kinds of germs
22 cause responses. There are many different responses
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1 involving any and every organ system -- pneumonia,
2 meningitis, cellulitis, and so on. Specific mechanisms
3 vary greatly although they have the same general
4 mechanism. Cholera, AIDS, shingles all have different
5 specific mechanisms.
6 There is no single biomarker. Identifying
7 specific germs took years. And notably prevention,
8 avoidance of exposure to these agents -- antiseptics,
9 sanitation, use of gloves preceded knowledge of specific
10 mechanisms.
11 For the immune theory of disease, the boxes
12 would look like this. Exposure to some kind of antigenic
13 substance with production of antibodies. Subsequently,
14 exposure to that same antigen triggering a response in the
15 host.
16 Once again note that many different kinds of
17 antigens cause responses. There are many different
18 responses involving any and every organ system -- the
19 skin, respiratory tract and gastrointestinal system, for
20 example. And specific mechanisms vary greatly. For
21 example, poison ivy versus allergic rhinitis versus serum
22 sickness.
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1 There is no single biomarker. Identification
2 of specific antibodies, in fact, took years. Prevention,
3 including avoidance and allergy shots, preceded knowledge
4 of specific mechanisms.
5 For the illness under discussion here, toxin-
6 induced loss of tolerance, again a theory of disease, the
7 boxes might look something like this. Exposure of the
8 host to a chemical event with subsequent loss of
9 tolerance. And we are talking about natural tolerance --
10 prior natural tolerance. And later other chemicals at low
11 levels triggering in that host symptoms.
12 Again note, that as for the germ and immune
13 theories of disease, many different kinds of chemicals may
14 cause responses. There may be different responses
15 involving any and every organ system. The specific
16 mechanisms may vary greatly and it is conceivable that
17 there is no single biomarker for response. Identification
18 of biomarkers in this area may also take years.
19 Prevention, of course, may precede our knowledge of
20 specific mechanisms in some cases.
21 While the concept, "loss of tolerance," may
22 sound vague, in fact it is not. What these individuals
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1 report is a loss of specific tolerance to particular
2 chemicals, foods, and so on. Note that this theory does
3 not exclude the possibility that toxin-induced loss of
4 tolerance could turn out to be a special case of the
5 immune theory of disease just as allergy or delayed-type
6 hypersensitivity are special cases that fall under the
7 general classification of immunological disorders.
8 One consequence of viewing toxin-induced loss
9 of tolerance as a possible theory of disease is a shift in
10 our perspective from chemical sensitivity as a syndrome to
11 chemical sensitivity or now toxin-induced loss of
12 tolerance as a class of disorders parallel to infectious
13 diseases or immunological diseases.
14 Much effort has been devoted to developing a
15 case definition both for chemical sensitivity and for the
16 Gulf veterans' illnesses with a singular lack of success.
17 This lack of success would not be surprising if, in fact,
18 these illnesses represented a new class or family of
19 disorders.
20 Certainly, it would not be feasible to develop
21 a single clinical case definition that would embrace all
22 infectious diseases. New theories for disease that
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1 withstand scientific scrutiny come along infrequently.
2 The past century has witnessed the inculcation of the germ
3 and immune theories of disease into medical practice.
4 Equating toxin-induced loss of tolerance to
5 either of these theories, both of which have been widely
6 corroborated, would be premature and presumptuous. At the
7 same time, toxin-induced loss of tolerance does have many
8 of the earmarks of an emerging theory of disease,
9 including the vituperative professional disputes which
10 surround it.
11 What is plausible depends upon the biological
12 knowledge of the time. Two-thirds of the 660,000 deaths
13 during the Civil War -- that is almost two-thirds of a
14 million deaths -- were caused by infections. However,
15 military physicians at that time had no concept of
16 microbes or infectious diseases.
17 Cases with fevers were divided into three
18 categories: remittent, intermittent, and relapsing.
19 Unrelated diseases likely were assigned to those
20 categories, for example, typhus, typhoid, malaria,
21 abscesses, tuberculosis, leptospirosis, borrelia,
22 pneumonia, and so on.
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1 Civil War surgeons commonly attributed
2 disease -- or misattributed disease -- to toxic miasma or
3 effluvia from the swamps or inadequate ventilation in the
4 tents. Only a few years after the Civil War, a series of
5 discoveries led to the development of the germ theory of
6 disease.
7 It is conceivable that medical understanding of
8 chemically induced disorders today is only beginning to
9 develop and that MCS and the Gulf veterans' unexplained
10 illnesses are some of the first evidence that current
11 explanations for disease are not sufficient and that a new
12 theory of disease is about to emerge.
13 In talking about these responses that
14 individuals have to an exposure, there is some convenient
15 shorthand that can be used. In the caffeine -- or, in the
16 addiction literature, the response to a substance that a
17 person is sensitive to is often depicted by a biphasic
18 curve with certain stimulatory symptoms with onset of
19 exposure and withdrawal symptoms at offset of exposure.
20 This parallels what has been reported by
21 veterans who have sensitivities now to caffeine, alcohol,
22 solvents. They may have initial symptoms of a certain
141
1 variety and then withdrawal symptoms such as headache,
2 lethargy, and depression.
3 Now, in a normal person who might be exposed to
4 a particular substance and is not sensitive, this line
5 would be a flat line. But in a very sensitive patient,
6 this might be depicted by a biphasic curve like this with
7 amplitude that, as the amplitude was greater, would
8 reflect the greater severity of symptoms.
9 During the day, if a person were putatively
10 sensitive to chemicals, they got up, perhaps used
11 hairspray, went and used their gas stove, drove through
12 heavy traffic, went to an office building where people
13 were wearing fragrances, were around some cigarette
14 smokers and so on -- things that they might be sensitive
15 to -- these various responses to individual exposures
16 might overlap in time resulting in an apposition or an
17 overlap of the symptoms.
18 Because there are so many symptoms occurring
19 simultaneously, many times the patients will say that they
20 cannot discern what particular exposure is causing what
21 effect. It is only when they avoid a substantial number
22 of exposures and foods that cause problems that they can
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1 actually decipher what exposure is causing which symptoms.
2 Once chemically sensitive individuals become
3 ill, because their sensitivities appear to spread to a
4 multitude of common exposures, it may be important for
5 them to be removed both from the original exposure and
6 from other chemicals that now may trigger adverse
7 symptoms.
8 Sorting out which exposures are perpetuating
9 the illness may be very difficult. Environmental chemical
10 exposures are ubiquitous. The resultant symptoms may
11 overlap in time and to some degree, individuals adapt as
12 exposure continues.
13 Urgently needed is a clinical approach for
14 determining whether chemical intolerances are at the root
15 of these patients' problems. There is a growing consensus
16 that important questions concerning causation in this area
17 cannot be answered without appropriate studies in a
18 controlled environment or Environmental Medical Unit -- a
19 hospital environment in which chemical exposures have been
20 reduced to the lowest levels practicable via specialized
21 air filtration and use of construction materials and
22 furnishings that do not release chemicals into the air.
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1 There, in accordance with scientific protocols,
2 patients could be removed from their usual home and
3 workplace exposures to see if they improve and if they do,
4 be re-exposed to very low levels of common chemicals to
5 see whether their symptoms recur.]
6 For research purposes, such testing should be
7 conducted in a double-blind placebo-controlled manner.
8 And this graph illustrates these potential sensitivities
9 overlapping in time, entering in a clean environmental
10 unit, which I will show you a picture of in a moment, the
11 symptoms resolving over a several-day period, which is
12 what has been described in the MCS literature, and
13 subsequently re-exposure to single substances one at a
14 time allowing ample time between them so that symptoms do
15 not overlap.
16 The picture of what an environmental unit might
17 look like -- and this has been done in the civilian sector
18 but never in a research setting and that is specifically
19 what is needed -- is a hospital room that has been -- from
20 which substances and materials that out-gas or release
21 volatile organic chemicals have been removed, perhaps
22 using terrazzo or tile flooring with non-out-gassing
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1 grouting, porcelain on steel walls, placing things like
2 televisions -- which do out-gas from the components as
3 they heat up -- in a ventilated enclosure and so on.
4 In essence, what we are proposing is that
5 there -- a series of postulates that one can use for
6 testing the etiology of these symptoms and determining
7 definitively whether they are or are not caused by
8 chemical exposure. First, if all chemical and food
9 incitants are simultaneously avoided as in an
10 environmental unit, remission of symptoms should occur.
11 Secondly, a specific constellation of symptoms
12 should occur with reintroduction of an incitant, if indeed
13 the person is sensitive to it. The symptoms should
14 resolve when that incitant is again avoided, whether it is
15 a chemical or a food.
16 With re-exposure to the same agent, the same
17 constellation of symptoms should reoccur, provided that
18 the challenge is conducted within an appropriate window of
19 time, meaning that the exposures do not overlap each other
20 and that so much time doesn't elapse that people's
21 sensitivities may wane.
22 Availability of an Environmental Medical Unit
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1 would allow physicians to refer a wide variety of cases in
2 which environmental sensitivities were suspected to the
3 unit for more definitive evaluation. There, physicians
4 could observe firsthand whether a sick patient's symptoms
5 improved after several days on a special diet in a clean
6 environment.
7 If improvement occurred, single chemicals at
8 concentrations encountered in normal daily living and
9 single foods could be reintroduced one at a time while the
10 effects of each introduction were observed. Thus, the
11 environmental unit would serve as a tool for ruling in or
12 ruling out environmental sensitivities in the most direct
13 and definitive manner possible.
14 Studying complicated patients like chronic
15 fatigue sufferers or ill Gulf War veterans in a
16 conventional exposure chamber would provide none of the
17 same information since chambers allow only short-term
18 residents, do not control the entire range of background
19 contaminants for sufficient periods, and provide
20 inadequate separation from background exposures prior to
21 challenges.
22 An analogy illustrates the importance of
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1 controlling exposures for extended periods prior to
2 challenge. If one wished to determine whether headaches
3 in a coffee drinker with a 10- to 15-cup-per-day habit
4 were due to caffeine, it would not work simply to give the
5 person a cup of coffee and ask him how he felt.
6 It is intuitively obvious that the patient
7 would need to stop using caffeine for a while before a
8 meaningful test of caffeine sensitivity could be
9 performed. In this instance, a false negative test would
10 be the most likely consequence of failure to avoid
11 caffeine or coffee prior to challenge.
12 Similarly, placing a putatively sensitive --
13 chemically sensitive person in a conventional exposure
14 chamber and exposing him to a few parts per million of a
15 chemical might not produce any noticeable effect, at least
16 not reliably. On the other hand, if you were to remain in
17 a clean environment for a few days -- an environmental
18 unit -- before being tested and his condition improved,
19 one could then perform meaningful challenges.
20 This approach to research -- blinded challenges
21 in a controlled environment -- was recommended by
22 physicians and researchers attending two national
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1 workshops on chemical sensitivity -- one organized by the
2 National Academy of Sciences and the other by the Agency
3 for Toxic Substances and Disease Registry.
4 Without carefully conducted challenge studies
5 of this kind, questions concerning etiology -- that is,
6 toxicogenic versus psychogenic -- cannot be resolved.
7 Although research in such an environment unit has been
8 proposed to the Department of Defense, Department of
9 Veterans' Affairs, and the National Institute of
10 Environmental Health Sciences, studies of this nature have
11 not yet been funded.
12 While Congress authorized partial funding for
13 such a project and the Department of Defense agreed to
14 provide the remainder, an Environmental Medical Unit still
15 has not been constructed.
16 In summary, the illnesses of MCS patients and
17 Gulf veterans share much in common: similar kinds of
18 symptoms and loss of prior tolerance for chemicals, foods,
19 and drugs following an exposure event. Their illnesses
20 point to a new general mechanism or theory of disease
21 described as toxin-induced loss of tolerance.
22 Not everyone develops this problem just as not
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1 everyone develops allergic sensitization. Confirmation or
2 reputation of this theory rests upon future double-blind
3 placebo-controlled challenges conducted in an
4 Environmental Medical Unit. Thank you.
5 DR. LANDRIGAN: Thank you very much. We have
6 some time for questions from the panel.
7 DR. LARSON: Dr. Miller, thank you very much.
8 A couple of questions. First, could you give us a better
9 picture of the prevalence and the spectrum of illness
10 and -- in the general population -- how common is it and
11 of some of the etiologic exposures that have been
12 recognized outside the Gulf War veterans?
13 DR. MILLER: There is no data on the general
14 population although four surveys have been done -- two on
15 populations in Arizona, one on EPA workers -- about 4,000
16 of them -- and one on rural individuals living in North
17 Carolina.
18 And the surveys show roughly a third of
19 individuals report intolerances to particular chemicals.
20 However, that may include a wide range of things and it
21 was a very nonspecific questionnaire item that was asked.
22 This does not count people who are disabled by such
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1 exposures, however, so you can't equate that to multiple
2 chemical sensitivity.
3 MCS may be sort of the tip of that iceberg and
4 we don't have data on that right now. The state of
5 California has been trying to put together a survey to
6 actually look at people after an exposure -- a spill --
7 and see how many eventually evolve into this kind of
8 problem.
9 Your second question?
10 DR. LARSON: The spectrum of illness.
11 DR. MILLER: The spectrum of illness is very
12 wide. The most common complaints are fatigue, memory and
13 concentration difficulties, and mood changes such as
14 irritability or depression. Sudden anger, for example,
15 driving your grocery cart down the detergent aisle and
16 smelling the detergent and getting very angry at people
17 and feeling like, you know, you want to run them over with
18 your grocery cart -- very irrational responses that the
19 patients recognize are irrational.
20 The veterans are experiencing similar things,
21 sometimes when they are driving. They report it when --
22 some of them call it short-fuse syndrome -- that they
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1 easily fly off the handle. And it is up to the
2 practitioner to look to see when those episodes occur, is
3 there a chemical exposure occurring contemporaneously?
4 That might explain some of those things.
5 Most veterans and patients aren't aware of --
6 even to look or be a detective insofar as --
7 DR. LARSON: Well, what I really meant was,
8 people -- is it a progressive illness where people will
9 die?
10 DR. MILLER: Well, it is progressive in that,
11 as I mentioned, of the survey patients I showed you here
12 who had MCS, 80 percent had been working full-time prior
13 to our -- prior to their exposure. And this was either a
14 sick building or a pesticide.
15 And subsequently when we surveyed them seven
16 years later, 80 percent said they could no longer work
17 full-time and most were not working at all. So yes, it is
18 progressive and their sensitivities seemed to spread to
19 involve other exposures. At least, this is the
20 observation clinically.
21 The proof of this is something else but
22 clinically, the observations are the sensitivities spread
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1 over time.
2 DR. LARSON: And could you give us a sense of
3 whether an effect -- a genetic or a hereditary effect --
4 the birth defects -- could that in any way be biological
5 plausible or consistent with this theory?
6 DR. MILLER: There is no data right now on MCS
7 patients in terms of effects on offspring so I can't
8 address that question.
9 DR. LARSON: Then just last question because I
10 know everybody else wants to ask, too. Why hasn't this
11 environmentally protected unit been built? You said there
12 is funding?
13 DR. MILLER: Well, the funding was
14 appropriated -- authorized by Congress for a portion of
15 such a unit. Department of Defense agreed to put up the
16 rest of the money. A solicitation went out. Money was
17 spent, as I understand it, but not to construct an
18 environmental unit so there seems to have been some
19 confusion about what the congressional intent was on this
20 issue.
21 DR. TAYLOR: Of the patients that you diagnosed
22 with MCS, following their diagnosis, you removed them from
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1 certain chemical exposures. Do any of these patients
2 return to work and how many of them actually improve?
3 DR. MILLER: First of all, I don't diagnosis
4 chemical sensitivity. This is a theory right now but one
5 for which there is a great deal of clinical support in
6 terms of observations. So certainly I think research is
7 needed in this realm.
8 There are a limited number of anecdotal cases
9 where people have returned to work after stopping the
10 initial exposure. A scientist at one of the universities
11 who stopped his exposure very early and avoided many
12 chemical exposures and was able to return to work.
13 And his -- in fact, his sensitivities
14 apparently resolved completely. Most of the patients are
15 later in their diagnosis. No physician recognizes this.
16 They continue to be exposed and it appears that the longer
17 they are exposed and continue to have these symptoms, the
18 less -- or, the longer the time it takes for their
19 symptoms to abate once they do start avoiding exposures.
20 Let me say that avoiding exposures is nothing
21 anybody wants to do. It is not a great way to live.
22 DR. TAYLOR: It can be pretty hard.
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1 DR. MILLER: That is right. It could be very
2 hard to do although some people only have a few
3 sensitivities. Others may have many more. But by using
4 an environmental unit as a research tool to first of all
5 document that this is or is not organic in nature and then
6 to look for an underlying mechanism.
7 That really is where the payoff will be. If
8 you can identify the mechanism, then you can gear your
9 therapies to that mechanism. So we are a long way off,
10 from a scientist's perspective, in terms of offering
11 therapies we know will be helpful to veterans.
12 They may find some things in the interim that
13 help them. Many of them report avoiding exposures is the
14 only way that they can maintain any sense of health. But
15 we are a long way from defining mechanisms in this area.
16 MR. RIOS: You answered part of this but maybe
17 you could give us a thumbnail sketch on what the status of
18 the research is on this endeavor, whether it is in private
19 industry or is it just that particular project that you
20 referred to earlier?
21 And secondly, what would you recommend that
22 this committee recommend insofar as how it could impact
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1 the Gulf War veterans?
2 DR. MILLER: There is a tremendous need to do
3 research in the unit and there have been many conferences
4 that have pointed in that direction. Prior chamber
5 studies that have been done in this area have not been
6 sufficient to resolve these questions.
7 In the interim, there have been a few
8 studies -- epidemiological studies to characterize the
9 populations, some studies looking at maybe a specific
10 mechanism like kindling -- but none of them have focused
11 on a central question which is, do chemicals trigger
12 symptoms in these individuals?
13 And until that question is definitively
14 resolved, we cannot begin to answer, you know, what kind
15 of treatments we should be offering people. Should there
16 be psychological kinds of therapies? Should there be, you
17 know, avoidance kinds of strategies? Should we -- what
18 kind of prevention should we be undertaking? Or what
19 sorts of preventive policies and other policies --
20 compensation policies we should adopt in this area.
21 So the primary recommendation, I think, that
22 you could make that would be of a great deal of help would
155
1 be to at least find out what has happened to this whole
2 project because I myself don't know what has happened to
3 it, and to determine whether you feel this is an area in
4 which investigation needs to proceed.
5 As I say, from my perspective, I was an
6 industrial hygienist for 12 years before I became a
7 physician. This is one of the few etiologic hypotheses
8 that make any sense. Why would veterans now be having
9 symptoms if they were exposed to a pesticide or a solvent
10 which basically has left their body since they came back
11 from the Gulf?
12 We have no toxicologic model to explain that
13 kind of problem. This is the only model that I know of
14 that begins to address that concern.
15 MAJOR KNOX: I was curious. Do you know if
16 these individuals who have multiple chemical
17 sensitivities -- do you find that they are also
18 immunosuppressed?
19 DR. TAYLOR: I didn't hear her question.
20 DR. MILLER: The question is, do people who
21 have these sensitivities also appear to be
22 immunosuppressed? There has been a very heterogeneous
156
1 literature on this with some people claiming that there
2 are changes in T-cells or alterations in other immune
3 parameters.
4 Most of the parameters that have been looked at
5 are not terribly sensitive parameters and there are a lot
6 of other things that could be looked at -- responses to
7 particular -- let's say stimuli, you know, cell-mediated
8 immunity kinds of investigations that really have not been
9 done in this area.
10 So we have only scratched the surface in terms
11 of immunological etiologies. Let me just say that there
12 is very little research in this area as a whole. You
13 would be startled how few thousands of dollars have been
14 spent on this concept and it has been largely because
15 people have felt in the scientific community it was not a
16 hypothesis worthy of exploration, that it was just -- it
17 had to be psychiatric in nature.
18 This did not look like any known model for
19 disease. Therefore, this whole approach was dismissed.
20 And I think you could go a long way in saying that this is
21 something that needs to be examined. You certainly would
22 not be going out on a limb doing that because there have
157
1 been multiple groups of scientists now who have looked
2 carefully at this issue and feel strongly that this needs
3 to be examined in a direct manner with challenge studies.
4 DR. LASHOF: Can you comment at all about how
5 the VA is handling the veterans who present? We have
6 heard a lot of unhappy people talk about the attitude of
7 the physicians and including Houston VA where you made the
8 point that it was a center that was asking these
9 questions.
10 Could you comment on that?
11 DR. MILLER: I was brought in as a consultant
12 on the first veteran that was seen in Houston. And they
13 realized that it was helpful to get exposure histories on
14 the veterans and talk about these concerns in the media
15 involving chemical sensitivity.
16 Most of the VAs do not have any way of getting
17 an exposure history. They do not have people trained in
18 environmental health and so that kind of data is not being
19 gathered on the veterans nor is there any discussion with
20 the veterans when they are there about possible risks,
21 things that we don't understand, like the things I talked
22 with you -- talked to you about today.
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1 Veterans are pretty much left to, you know, go
2 home and given a very good workout in terms of ruling out
3 conventional diagnoses. Then they struggle to try to seek
4 help from other doctors. Some go to the civilian sector
5 where, in certain cases, they will get a diagnosis of
6 chemical sensitivity.
7 And then they go back to the VA and ask the VA
8 what is wrong with them that they couldn't have diagnosed
9 this because to them, to the veteran, it fits the pattern
10 of illness that they are experiencing. So they feel very
11 angry at the VA frequently over this. And many of them
12 are doing very badly over time.
13 You should look at the people in the referral
14 centers who have been through there and see what has
15 happened to them over time. Most of them are not getting
16 better, is my understanding. And it is not because they
17 haven't received good medical care. It is because we
18 don't know how to treat it and what to do for it.
19 So there is a great deal more that could be
20 done to assure that we have good exposure histories taken
21 among the veterans. But to explore this question of
22 chemical sensitivity, the Department of Defense asked me a
159
1 year or two ago for a questionnaire on chemical
2 sensitivity, which I provided to them, and they have been
3 administering as part of their comprehensive evaluation
4 program.
5 Thus far I have not seen data from that. I
6 know they have reams of data. But I think this is one
7 area that they have collected data in and that data could
8 be analyzed and looked at. Again, remember that people
9 may not be aware of their sensitivities until they avoid
10 them for a while and then are re-exposed.
11 And we ask patients to take a diary -- keep a
12 diary of any responses they have when they are exposed to
13 exposures and start to see if they are reproducible
14 responses. Don't jump to conclusions but see if there are
15 patterns to their responses.
16 DR. LASHOF: Isn't there a protocol that you
17 would like to suggest to the VA centers that they try to
18 use to get that kind of a history and then follow through
19 and have a series? That is one question. And second,
20 have you applied for funding under the DOD recent RFA to
21 pursue these issues?
22 DR. MILLER: The answer to both questions is
160
1 yes. There have been a number of questionnaires that have
2 been developed that would help a lot in this process if
3 the VA felt it was okay to administer that kind of
4 questionnaire. Again, what the controversy is
5 in the scientific community over this subject, I think,
6 many veterans -- veteran physicians are worried about even
7 broaching this subject. They aren't comfortable dealing
8 with it. They don't understand it but with good
9 education, I think, the staff out there could be at least
10 gathering this kind of information and talking to
11 veterans, giving them some good pieces of information
12 about the controversies extant in the medical profession
13 currently.
14 In response to your second question, we
15 originally proposed to NIEHS that an environmental unit
16 needed to be constructed. This pre-dated the Gulf War, I
17 should say, just to study people from sick buildings and
18 people with pesticide exposures.
19 And NIEHS is very tuned into the need for this
20 kind of study but they aren't able to provide funding for
21 bricks and mortar to provide construction monies. It is
22 not in their mandate. And so they have been looking for a
161
1 partner, perhaps, to maybe help with the construction of
2 such a facility.
3 And we have looked earnestly toward DOD, DVA
4 for such funding. In fact, we have a pending proposal
5 right now. This is the second time through for an
6 environmental unit. This would be done under the auspices
7 of an advisory group of well-known university scientists
8 in indoor air quality and psychiatry and other areas to
9 provide protocols that would hold up in the scientific
10 community.
11 But whoever does this, it needs to be done in
12 the right manner. And using exposure chambers -- putting
13 people in a small room and exposing them to a chemical
14 without removing them from exposures and getting them to
15 feel better, if they can first, does not make sense. You
16 have to have an environmental unit to do this work and it
17 is not inexpensive.
18 DR. LANDRIGAN: Let me ask one last question,
19 Dr. Miller, before we break. What treatment or what
20 regime of treatments are you recommending for folks whom
21 you are caring for? I know that there have been various
22 remedies proposed in the literature -- chelation, sauna,
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1 antibiotics, immunoglobulin, others. What do you use?
2 DR. MILLER: Well, I am not treating. Again, I
3 am not diagnosing and treating this problem. I serve as a
4 consultant. One thing I need to say to you, though, is to
5 make sure to separate these questions of controversial
6 therapies -- and there are many of them out there --
7 separate that question from the question, Does this exist
8 as a real clinical condition caused by chemical exposure?
9 And that question needs to be addressed before
10 we can answer what therapies are appropriate. In the
11 interim, a number of these groups that have met --
12 especially with ATSDR -- physicians who are dealing with
13 this problem in academic centers have felt that since we
14 don't know the mechanism, whether it is psychogenic or
15 toxicogenic, that we need to really avail patients of both
16 possibilities.
17 In other words, allow supportive psychotherapy
18 or any appropriate psychotherapy. This is a difficult
19 illness, even if it is due to chemicals exclusively. Very
20 difficult to cope with because people have trouble just in
21 their normal routine, living with their families and with
22 their jobs.
163
1 And then on the other hand because avoidance
2 may be necessary for some of these individuals and these
3 highly-educated MCS patients tell us this -- that we allow
4 them to do trials of judicious avoidance, just as we would
5 with exposure in an occupational setting in suspicion that
6 asthma might be due to a chemical exposure -- removing
7 them from that exposure for a week or so and then having
8 them go back in a judicious manner and see if their
9 symptoms recur.
10 And we have had some veterans who have done
11 this and they have had resolution of their symptoms and
12 recurrence with re-exposure. A number of veterans have
13 reported feeling markedly better when they go away from --
14 let's say, go up to northern Wisconsin. And of course a
15 psychiatrist would say, Well, I would feel better, too, if
16 I went up to northern Wisconsin.
17 But then as they are driving back home in the
18 traffic exhaust, their symptoms begin to recur. So this
19 kind of observation -- keeping a careful diary of when
20 symptoms occur in relationship to particular exposures is
21 again something that the VAs could be having patients do,
22 if their physicians were trained to look at this
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1 possibility.
2 DR. LANDRIGAN: Okay. Thank you very much and
3 we thank all those who testified this morning.
4 DR. MILLER: Thank you.
5 DR. LANDRIGAN: We are going to break now. And
6 we are scheduled to resume promptly at 1:15. So just less
7 than an hour from now. Thanks.
8 (Whereupon, the hearing was recessed to
9 reconvene this same day at 1:15 p.m.).
10 A F T E R N O O N S E S S I O N
11
12 DR. LANDRIGAN: Let's get started, please. If
13 you will take your seats. So our first speaker this
14 afternoon is Dr. Nelson Gantz at Pennsylvania State
15 University College of Medicine. Dr. Gantz is going to
16 address us on the subject of chronic fatigue syndrome.
17 Dr. Gantz, could I ask you to keep your remarks
18 to 20, 25 minutes and that will give good, ample
19 opportunity for questions.
20 DR. GANTZ: Twenty minutes it will be.
21 DR. LANDRIGAN: Thank you, sir.
22 DR. GANTZ: And then if I go over five seconds,
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1 interrupt me.
2 DR. LANDRIGAN: We will give you a little rope
3 but if you could aim for that.
4 DR. GANTZ: My pleasure. I am certainly
5 delighted to be here to address the distinguished panel
6 and those victims in the audience.
7 I became involved in chronic fatigue syndrome
8 in the early 80s when I saw a number of patients that had
9 symptoms of sore throat, muscle aches, joint complaints --
10 symptoms suggesting infectious mononucleosis but the only
11 difference was, the patients failed to get better.
12 Instead of getting better in three months, four
13 months, the patients remained symptomatic for one year,
14 for two years, and longer and became involved in writing
15 the case definition that was published in the Annals of
16 Internal Medicine for chronic fatigue syndrome in 1988 and
17 then redefined. It was published in 1994.
18 And what I want to do in the next 19 minutes is
19 talk about chronic fatigue syndrome and the similarities
20 with the Persian Gulf War Syndrome. If one looks at --
21 and these are a 19th century lithograph of two women
22 complaining of marked fatigue but it could be two
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1 children, it could be two men.
2 Fatigue is a very, very common complaint and
3 the complaint, I am simply all worn out, is noted by about
4 20 to 25 percents of patients seeking medical care.
5 Unfortunately, we don't have any good laboratory tests to
6 define fatigue. Now, if one looks at -- and this is a
7 patient that is confused but it could be a healthcare
8 provider that is confused, with those complaints that I
9 mentioned -- muscle aches, joint complaints, problems with
10 concentration -- enters the healthcare system in a number
11 of doors, maybe through an internist initially.
12 Maybe he sees a family physician. Maybe he
13 presents to the emergency department. Multiple
14 complaints. And the patient is told, Everything is fine.
15 Maybe you need to see a neurologist because you are
16 talking about headaches and paresthesias.
17 And the neurologist says, Gee, the exam was
18 normal. You obviously need to see a psychiatrist. The
19 patient says, Well, gee, I was perfectly fine. Had a flu-
20 like illness and now I don't -- I have multiple symptoms.
21 Now, an example of marked fatigue, you know,
22 severe fatigue. We can see it but it is certainly hard
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1 because we don't have a laboratory test to define fatigue.
2 Chronic fatigue syndrome made the cover of Newsweek
3 magazine. It says, "A debilitating disease affecting
4 millions and the cause is still a mystery."
5 And we will talk about the prevalence of
6 chronic fatigue syndrome and the prevalence of how common
7 it is depends on the definition one uses to define the
8 entity. And we will talk about the cause of chronic
9 fatigue syndrome, what is known.
10 There are a number of unanswered questions.
11 One, does chronic fatigue syndrome even exist? Is there
12 such an entity? What is its cause? Is it a new or old
13 disease? How can you diagnose it? What is the
14 relationship between Epstein-Barr virus and chronic
15 fatigue syndrome because there were two papers published
16 in the Annals of Internal Medicine in 1987 suggesting that
17 Epstein-Barr virus was responsible for chronic fatigue
18 syndrome.
19 And in fact, subsequent research has shown that
20 this virus is not involved in this disorder. Is it
21 contagious and other effective treatments. Now, one can
22 look -- this was a paper published in 1869 in the Boston
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1 Medical and Surgical Journal which is a journal which
2 preceded New England Journal of Medicine.
3 It was a paper entitled, "Neurasthenia." And
4 neurasthenia, if you read the paper over, the symptoms
5 sound like chronic fatigue syndrome -- very, very similar
6 complaints. And these patients were treated. It was an
7 interventional study at the time.
8 I don't know how much informed consent they had
9 but they did this study. Two-thirds of the patients were
10 cured or greatly benefited and five had a slight benefit.
11 Five had no benefit. You know, maybe these two-thirds of
12 the patients said, You know, I don't want a second
13 treatment. You know, I feel better already.
14 But again, not a new disorder. Not a new
15 disorder. And you look at chronic fatigue syndrome, there
16 are a number of reports going back. Here there is the
17 paper in 1869 talking about nerve weakness. Atypical
18 polio reported in 1938. This was a group of student
19 nurses in Los Angeles that had muscle complaints,
20 paresthesias, headaches, marked symptomatology. It was
21 described as atypical polio.
22 Akureyri's disease, Icelandic disease --
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1 Akureyri is a city in Iceland, again, with similar
2 symptomatology. And one can look here -- rural free
3 disease, Lake Tahoe Illness. There continues to be
4 clusters and reports of fatiguing illnesses associated
5 with a number of complaints.
6 Recently, there was an outbreak in Pigeon,
7 Michigan, again, of a fatiguing illness with muscle aches
8 and joint complaints. So these continue to occur. So I
9 don't think we are seeing anything that is new. If one
10 looks at epidemic neuromyasthenia, there have been more
11 than 30 outbreaks since 1934. Some have as many as 1,000
12 cases. Tends to have a short incubation period and
13 affects -- two-thirds of the patients are female.
14 And we don't have an explanation for what is
15 causing epidemic neuromyasthenia. Now, if you look at
16 alternative diagnoses to the complaint, I am simply all
17 worn out, maybe we are talking about depression.
18 Depression or psychiatric illness is a label that patients
19 don't like having placed.
20 Patients clearly prefer having an infectious
21 type of disorder as opposed to having been told that I
22 have a psychiatric disease. But we don't know what the
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1 etiology of depression is. For all I know, depression may
2 have an infectious basis.
3 Chronic brucellosis. Chronic brucellosis was a
4 disorder that was popular in the Redbook magazine before
5 hypoglycemia became popular. Chronic candidiasis, the so-
6 called yeast connection. Yeast Connection relates that
7 overgrowth of yeast are responsible for multiple symptoms
8 and if you treat the yeast, then the symptoms improve.
9 Again, there is a Dr. Crook or a Dr. Crock who wrote a
10 book. Lists all symptoms known to mankind. Itchy teeth,
11 for example. You know, not a common complaint. And
12 again -- but there is no evidence that this entity exists.
13 Total allergy syndrome and fibromyalgia, which
14 you are going to hear shortly about which is very, very
15 similar to chronic fatigue syndrome, which overlaps. I
16 think you can look at chronic mononucleosis syndromes into
17 three categories.
18 One, prolonged recovery from acute infectious
19 mono. Most patients with infectious mono recover in about
20 a month. But some patients take two months, three months,
21 four months. I could ask anyone in the panel, has anyone
22 every had infectious mono? No one admits it. Good. You
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1 had it. How old were you?
2 MICHAEL KOWALOK: I was in first grade.
3 DR. GANTZ: First grade, so about six. So it
4 wasn't too long ago. Six or seven. You know, it is
5 interesting. Most people that have symptomatic disease
6 have disease -- symptomatic disease usually over 15 years
7 of age. But that was -- it is less common. How long did
8 it take you to get better?
9 MR. KOWALOK: It was about half a year.
10 DR. GANTZ: About half a year. You know, and
11 again, there was a study at West Point. Fifty percent of
12 cadets were better in two weeks and the other fifty
13 percent were better in two more weeks. They said, Either
14 you are better or you are out.
15 But again, there is a spectrum of getting
16 better. There is a disorder called chronic active EBV
17 infection where one has pancytopenia, hepatitis,
18 pneumonia -- again, markedly deranged abnormalities due to
19 Epstein-Barr virus. And then chronic fatigue syndrome.
20 Now, there are many causes for chronic
21 fatigue -- multiple causes -- so it is not a simple -- it
22 is an extensive differential diagnosis from psychiatric
172
1 illnesses, from infection. Again, untreated thyroid
2 disease, certain medications can cause fatigue.
3 So there is a big list of disorders that may be
4 responsible for fatigue. And fatigue is clearly -- for
5 chronic fatigue syndrome, as you can see, is a diagnosis
6 of exclusion. This was the original case definition which
7 I supplied you with and this definition required the
8 presence of having at least six of eleven symptoms which I
9 will illustrate, plus two physical signs, or having eight
10 symptoms.
11 The diagnosis depends on having severe fatigue
12 not relieved by bed rest, so it is not just being tired.
13 This is not tiredness. And reduces average daily activity
14 less than 50 percent and it is not previously experienced.
15 Someone who was well, has some sort of illness or some
16 sort of stressful event and fails to get better.
17 Secondly, it is a diagnosis of exclusion since
18 there is not laboratory test for chronic fatigue syndrome,
19 unfortunately. Now, if you look at the symptoms and the
20 symptoms, again, are symptoms experienced by many patients
21 with Persian Gulf War Syndrome and, again, low-grade
22 fever, sore throat, painful lymph nodes, muscle weakness,
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1 muscle aches, fatigue after exercise.
2 So patients could tolerate going to the store.
3 Now they go to the store and wiped out for two or three
4 days. Headaches not previously experience,
5 neuropsychological complaints, problems with
6 concentration, trouble with memory, students going from
7 being an A-student to failing school, sleep disturbance,
8 waking up feeling tired, and the onset ought to be over a
9 short period of time rather than over 50 years.
10 That was the original definition. This was a
11 meeting held at the NIH where one said we ought to exclude
12 certain diseases because it is certainly hard to diagnose
13 chronic fatigue syndrome if someone has underlying
14 schizophrenia.
15 You obviously could have two illnesses. You
16 could have diabetes plus but since you don't have a
17 laboratory test for this entity, one tries to define a
18 better group of patients. Substance abuse is an example
19 and including fibromyalgia.
20 This is a new definition that was published in
21 '94. Similar to the previous definition but the new
22 definition talks about having the severe fatigue.
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1 Secondly, it is a diagnosis of exclusion. And instead of
2 requiring eight symptoms, one needs just to have four
3 symptoms and the four symptoms ought to occur within the
4 first six months because you wouldn't want to have, like,
5 a sore throat one year, five years later a muscle ache,
6 and then three years later a poor night's sleep.
7 And the symptoms again: impaired memory
8 concentration, sore throat, tender lymph nodes, muscle and
9 joint pain, unrefreshing sleep. This is a pretty Venn
10 diagram looking at chronic fatigue syndrome. And there is
11 clearly an overlap with underlying depression and
12 fibromyalgia.
13 This is fatigue in the community. And if one
14 fails to meet the four criteria for chronic fatigue
15 syndrome, then one is said to have idiopathic chronic
16 fatigue -- having the severe fatigue but only have two or
17 three other symptoms.
18 Here was a study from -- it is not limited --
19 chronic fatigue is not limited in this country. It occurs
20 throughout the world. This is a study from Australia
21 looking at a prevalence rate of about 40 cases per
22 100,000. There have been studies done in this country
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1 where the rates are 200 per 100,000.
2 Again, the prevalence of the disorder depends
3 on the criteria one uses to define the illness. And 42
4 percent of individuals are disabled, wiped out. If one
5 looks at laboratory tests, you can do a lot of laboratory
6 tests. A lot of laboratory testing has been done.
7 I think the hallmark of the disorder is having
8 a normal sedimentation rate of 1 or 2 -- normal sed rate.
9 I think these other laboratory tests really don't really
10 add anything to patient care other than utilize healthcare
11 dollars inappropriately.
12 You know, here again, a lot of testing has been
13 done with various cytokines showing abnormalities but, in
14 fact, the abnormalities don't necessarily -- aren't
15 necessarily meaningful at this point in time in the
16 illness. Here was a study published in the Journal of
17 Clinical Endocrinology looking at possibly endocrine
18 abnormalities with chronic fatigue syndrome. And there
19 may be some changes showing decreased basal plasma
20 cortisol levels and decreased ACTH response to
21 corticotropic releasing hormone.
22 So there may be some endocrine basis for this
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1 disorder. And there was a study that was just completed
2 at the NIH looking at low-dose hydrocortisone versus
3 placebo because hydrocortisone, if it is slightly
4 diminished, ought to help.
5 Here is a report that was published in JAMA
6 1995 looking at hypotension and chronic fatigue syndrome.
7 Patients having a tilt-table testing. When you have a
8 tilt-table, when you go upright, certain patients drop
9 their blood pressure. And in addition to dropping their
10 blood pressure, have many of the symptoms seen with
11 chronic fatigue syndrome.
12 This was a study reported. Many patients had
13 abnormal tilt-table tests and three-quarters of patients
14 improved with measures to increase their blood pressure.
15 Sounds exciting. Unfortunately, it is not a controlled
16 observation so you don't know. And that study is being
17 currently done at the NIH to look at that.
18 So that may be a factor. My sense, this is not
19 the total answer. We have had many patients with abnormal
20 tilt-table tests, treat them, and they still feel tired.
21 What causes chronic fatigue syndrome? I think the bottom
22 line is we don't have an etiologic agent.
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1 A lot of agents have been looked at. Many CVs
2 have been enhanced by looking at it and saying, It is not
3 this, It is not this, It is not this. Epstein-Barr virus,
4 numerous studies, probably doesn't have a causative role.
5 CMV, similarly. Human herpes virus VI. You
6 can show that it is replicating more in patients with this
7 disorder but probably not the agent. Enteroviruses. If
8 you are in England, certain enteroviruses have been seen
9 in muscle biopsies of patients with chronic fatigue
10 syndrome. More evidence is needed.
11 Retroviruses. There was one report suggesting
12 that it had a role. Never confirmed by the CDC. So we
13 don't know, 1996, what causes chronic fatigue syndrome.
14 My sense is chronic fatigue syndrome -- again, this is
15 hypothesis, not fact.
16 There are a number of predisposing factors,
17 maybe psychiatric illness. There is some evidence
18 supporting that. Maybe there are genetic factors and that
19 is being looked at with the current grant. Maybe there
20 are environmental factors as we heard earlier today.
21 Syndrome precipitants: infection or maybe
22 stress. I don't think stress is beneficial in life. And
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1 perpetuating factors: physical deconditioning, concurrent
2 psychiatric illness, misattribution of symptoms and maybe
3 the presence of cytokines.
4 What about therapy for chronic fatigue
5 syndrome? And this is a patient that came to see me and
6 she was taking these different agents: Ageless Beauty --
7 I kept that.
8 Two minutes is fine. Let me just focus on
9 managing a patient with chronic fatigue syndrome. I think
10 it is important to want to establish a diagnosis. I think
11 it is disturbing to patients to be told that they have
12 nothing when they have multiple symptoms. I think that is
13 of importance.
14 Secondly, emotional support is critical.
15 Thirdly, continue to rule out other medical problems.
16 Avoid exotic, untested remedies. I saw one patient who
17 had multiple symptoms from the Persian Gulf War -- had
18 malignant melanoma. Now, I don't think you can implicate
19 malignant melanoma as coming from the Persian Gulf War.
20 Avoid exotic, untested remedies. Symptomatic
21 treatment is critical for this illness. Treating the
22 symptoms. Graded exercise program and regular follow-up.
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1 I think there are a number of problems in interpreting
2 chronic fatigue syndrome studies.
3 Heterogeneous patient populations make it
4 difficult to distinguish chronic fatigue from psychiatric
5 disorders. Lack of an objective diagnostic marker, few
6 double-blind placebo-controlled trials, absence of
7 objective response markers, and newly-diagnosed cases may
8 differ from long-standing cases.
9 So it is not an easy entity to study. Therapy,
10 I said, is symptomatic. And particularly treating
11 depression with antidepressants. And because someone is
12 given an antidepressant and feels better, you can't
13 conclude that the underlying problem was necessarily
14 depression.
15 If one felt lousy, I think everyone would have
16 a secondary depression. I think if everyone on the panel
17 couldn't concentrate, couldn't remember, you would be
18 depressed. I think that is not surprising. Treating the
19 sleep disorder, I think, makes good sense. Poor,
20 unrefreshing sleep -- you feel lousy. You know, if you
21 all were up at 4:00 in the morning, you would be wiped
22 out.
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1 So symptomatic therapy is critical. Treating
2 the muscle and joint aches as well. I am going to skip
3 that and show you one more slide and then we will take
4 questions. So I think in summary, I think chronic fatigue
5 is real. Etiology is unknown. It remains a diagnosis of
6 exclusion. Symptomatic therapy,
7 reassurance and support, and regular follow-up. We are
8 sort of geared in medicine to looking at the laboratory
9 tests. If the tests are normal, we say the patient is
10 fine. It says, I didn't say you feel good, I said the
11 laboratory reports do.
12 That is how we sort of practice. And it says,
13 Doc, can you give me something to make me feel a bit more
14 energetic? And it says, Good news. You don't have
15 chronic fatigue syndrome. You are hibernating.
16 Let me stop and take questions at this point.
17 DR. LANDRIGAN: Thank you very much. So Dr.
18 Gantz' presentation is open from the panel for questions.
19 DR. TAYLOR: Dr. Gantz, of the patients that
20 you see, how many of them actually return -- those
21 diagnosed with chronic fatigue syndrome -- with treatment,
22 are they able to work?
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1 DR. GANTZ: Well, if you look at -- and there
2 have been a lot of studies done. There have been studies
3 done in children with chronic fatigue syndrome. And in
4 children, the majority in one report seemed to get better.
5 Studies in adults, they vary.
6 Some studies show that about 80 percent don't
7 get better. Have a waxing and waning illness. About 20
8 percent totally recover. I think with therapy many
9 patients can feel better. In other words, sleeping
10 better, having more energy. Not necessarily cured.
11 DR. TAYLOR: For instance, I do -- I am
12 familiar with -- I also have a personal friend who has --
13 from the general population -- who has the illness. And I
14 was just concerned about, she has not been able to return
15 to her -- resume her normal way of life since that.
16 DR. GANTZ: Well, there are a number of
17 strategies, as I mentioned, that can be used to get
18 someone to feel better, not necessarily cured. And I
19 think it is a real entity. It is so difficult because in
20 medicine, if you see someone bleeding, coming in with
21 crutches, you say, That person is ill.
22 And if you see someone who looks, "normal," you
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1 say the person must be fine. And I think it is more to
2 that. Any other questions?
3 DR. LASHOF: Have you treated many Gulf War
4 veterans?
5 DR. GANTZ: Not many Gulf War veterans. No.
6 DR. LASHOF: Well, then you probably don't know
7 but have you talked with others? Can you make any --
8 DR. GANTZ: I have certainly talked with other
9 individuals who have, in looking at the symptomatology,
10 very, very similar symptoms as chronic fatigue syndrome.
11 DR. LASHOF: Are there any characteristics that
12 you think are really different in the Gulf War than
13 chronic fatigue, where they really differ?
14 DR. GANTZ: Well, I think it is difficult to --
15 that is a good question. But I think the key factor is,
16 here, is you have got to look at what the patients have.
17 And I think we are sort of lumping together, looking for
18 one syndrome to explain everything. And I think that is
19 probably a misclassification occurring and I think that is
20 one of the problems.
21 And there is obviously probably a group of Gulf
22 War Syndrome patients that have some precipitating factor.
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1 And instead of getting better, go on to have persistent
2 symptoms. And there is obviously other Gulf War veterans
3 that probably have -- maybe some of them had
4 leishmaniasis.
5 DR. TAYLOR: What about work history or
6 environment exposures? I mean, is there --
7 DR. GANTZ: Well, it is a good question. There
8 was a recent paper in the Medical Journal of Australia
9 looking at hydrocarbon levels. And they were elevated in
10 patients with chronic fatigue syndrome compared with
11 controls.
12 Again, maybe that is a clue I think you think
13 to have look at carefully. And do the necessarily
14 elevated levels explain the symptoms? So it is one thing
15 seeing an abnormality. The other thing, is it true true
16 related or true true unrelated?
17 And I think it is easy, as everyone knows on
18 the panel -- certainly knowledgeable -- it is easy to do a
19 bad research. Not difficult. It is hard to get -- do
20 good science. And it is slow and costly and for those
21 sitting in the audience, the pace is too slow.
22 The pace is too slow but on the other hand, it
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1 takes a while.
2 DR. LASHOF: Do you see much relationship
3 between multiple chemical sensitivity and chronic fatigue
4 syndrome or do you think they are completely different
5 elements?
6 DR. GANTZ: I think the cluster of symptoms
7 that may occur from multiple chemical sensitivities, I
8 think may be very, very similar. And I think there may
9 be -- that may be a precipitating factor. I think what is
10 lacking with multiple chemical sensitivities, as the
11 previous speaker said, is any data.
12 We are looking at hypotheses. Hypotheses that
13 look, certainly, exciting but you need to do carefully
14 controlled studies to see. And I think they may be a
15 factor. Who knows? Who knows? Listen, Adam lived to
16 980. And then we got healthcare and no one lives that
17 long any more, right? There weren't any chemicals around
18 then.
19 DR. LANDRIGAN: Only naturally occurring ones.
20 DR. GANTZ: What was that?
21 DR. LANDRIGAN: Only naturally occurring ones.
22 DR. GANTZ: Only natural ones at the time. Any
185
1 other questions?
2 DR. LANDRIGAN: Okay. Thank you very much, Dr.
3 Gantz.
4 DR. GANTZ: My pleasure.
5 DR. LANDRIGAN: It was very good. Now, next we
6 will hear from Dr. Daniel Clauw from Georgetown University
7 Medical Center who will speak on fibromyalgia and its
8 relationship to other syndromes, including multiple
9 chemical sensitivity and chronic fatigue. Dr. Clauw.
10 DR. CLAUW: Thank you. I would like to thank
11 the committee and the organizers for inviting me to speak
12 today. And I would like to thank the patients and their
13 families and their advocates for the moving testimonials
14 this morning.
15 If it is any consolation, there are probably
16 hundreds of thousands, if not millions, of people in the
17 United States who have symptoms very similar to what were
18 described today and the same kinds of difficulties dealing
19 with bureaucrats who don't believe that the individuals
20 are really ill and who have very real disabilities, the
21 same types of frustration with mainstream healthcare in
22 our inability to make these people better.
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1 And once again, these occur when I go and talk
2 to support groups of chronic fatigue syndrome patients or
3 fibromyalgia patients. You hear these stories over and
4 over again.
5 I was given the charge today of talking about
6 four general topics in fibromyalgia. First, the
7 definition. Secondly, the relationship with other
8 disorders. Thirdly, the pathogenesis or cause. And in
9 that regard, all we have are hypotheses. And then
10 finally, treatment of fibromyalgia.
11 I will start with talking about the definition.
12 You have heard already from Dr. Gantz the definition for
13 chronic fatigue syndrome, which is listed on the right.
14 But I put it here for illustration to show how similar
15 these illnesses are.
16 On the left is the diagnosis of fibromyalgia
17 and it is a very similar diagnostic criteria. It is first
18 that the individual has a history of widespread or diffuse
19 musculoskeletal pain. And for purposes of studies, that
20 is defined as having pain in all four quadrants of the
21 body and pain involving the axial skeleton.
22 And also that the individual has the presence
187
1 of 11 of 18 tender points or trigger points. And I will
2 talk more in just a second about the notion of tender
3 points or trigger points. And you can see here with the
4 CFS definition put side-by-side that there is -- that
5 chronic fatigue syndrome, on the other hand, is defined
6 largely on the basis of debilitating fatigue but we know,
7 for example, that about 50 or 60 percent of people who
8 have fibromyalgia have chronic fatigue syndrome and vice
9 versa. There is a tremendous overlap between these
10 diagnoses.
11 And this what I have labeled the old paradigm
12 of the way we used to think of fibromyalgia. That is, the
13 woman here in purple with red areas indicating the tender
14 points or trigger points -- red meaning pain. But what we
15 have come to recognize is that there is a lot of problems
16 with this definition.
17 One is that we now know that the individual is
18 all red. That is, that individuals with fibromyalgia have
19 pain throughout their entire body and they don't just hurt
20 in areas that have been designated as tender points or
21 trigger points.
22 The areas of tender points are areas where
188
1 everyone is more tender, whether you are looking at the
2 general population or people that have a specific disease.
3 And so if you walk up behind someone and push in their
4 mid-trapezius region, which is a tender point, and you
5 apply enough pressure, most people will feel tenderness.
6 And as matter of fact, when epidemiologic
7 studies have been done in the general population, the
8 average number of tender points that a normal individual
9 who doesn't have fibromyalgia has is three point seven.
10 So four tender points is normal.
11 This notion that magically when you get to
12 eleven tender points, you have a disease that we call
13 fibromyalgia is somewhat problematic, especially given the
14 fact that we now recognize that people don't only hurt in
15 these areas of tender points.
16 There is a couple of other problems with this
17 definition. One is that it depends on the state of the
18 individual and that is that we know that in any pain
19 conditions, pain vacillates widely from day to day, week
20 to week, or month to month.
21 And this notion that at the time that you get
22 your appointment that you waited ten months for to see the
189
1 rheumatologist at the VA, that when you go in at two
2 o'clock, if you have ten tender points you don't have
3 fibromyalgia and if you have eleven, you do, is sort of
4 ludicrous given everything that we know about pain and
5 everything that we know about how the symptoms wax and
6 wane in these kinds of conditions.
7 And then finally, one of the big problems with
8 this definition is that it depends a great deal on the
9 observer. One of the things that I see very commonly as I
10 bring residents or fellows through to teach them how to do
11 a tender point exam is first, that they are not pushing in
12 the right spot and second, that they are not pushing hard
13 enough.
14 So if you don't push in the right spot and you
15 don't put four kilograms of pressure, which is a lot of
16 pressure -- it is nine pounds of pressure over your
17 digit -- you won't detect tender points when the person
18 really has tender points.
19 So we have this definition that works very well
20 when you are doing it -- looking at a research setting
21 either in an epidemiologic setting or a clinical research
22 setting and you are trying to define a more homogeneous
190
1 group of patients. But it falls apart when you try to use
2 it in clinical practice. In clinical practice, there is a
3 lot of problems with this definition.
4 And the other thing that we have learned about
5 fibromyalgia is not only is the woman all red -- and I say
6 woman only because that all of these illnesses occur more
7 commonly in females than in males but they by no means
8 exclusively occur in women.
9 But that when you identify a group of
10 individuals with either chronic fatigue syndrome or
11 fibromyalgia, that there is a number of other symptoms or
12 syndromes that I call non-defining features of
13 fibromyalgia or non-defining syndromes including things
14 that many people have talked about already today but that
15 occur in anywhere from 40 to 70 or 80 percent of
16 individuals with either fibromyalgia or chronic fatigue
17 syndrome.
18 And I will just go really quickly through
19 these. Tension and migraine headaches, affective
20 disorders such as anxiety and depression,
21 temporomandibular joint or TMJ syndrome, constitutional
22 symptoms such as weight fluctuations, night sweats,
191
1 weakness, and sleep disturbances, irritable bowel
2 syndrome, non-dermatomal paresthesias. Non-dermatomal
3 paresthesias mean the people have numbness and tingling
4 but it doesn't follow the pattern of a single nerve route.
5 Going back up to the top right. Cognitive
6 problems -- very severe in some people with chronic
7 fatigue syndrome and fibromyalgia -- in many cases, the
8 most debilitating feature of the illness. Ocular
9 complaints: dry eyes, dry mouth, problems with focusing.
10 Balance complaints, multiple chemical
11 sensitivity, which was also -- already discussed.
12 "Allergic symptoms." We are not sure if these are true
13 allergies or if people just have painful eyes, dry eyes,
14 runny nose, and other types of allergic symptoms. But it
15 goes on and on.
16 And once again, studies have been done in both
17 chronic fatigue syndrome and fibromyalgia showing that the
18 spectrum is much wider than we originally anticipated.
19 Fibromyalgia is not a musculoskeletal disease. Chronic
20 fatigue syndrome is not a fatigue syndrome per se because
21 individuals have syndromes and symptoms in other organ
22 systems.
192
1 I apologize because of the lighting. You can't
2 probably read the top but this is a Venn diagram showing
3 on the top right fibromyalgia which we know affects about
4 1 to 2 percent of the population. Of all of these
5 studies, it is the best-studied as far as prevalent
6 studies in the general population.
7 And the studies have been done in four
8 different countries and all come out with about 1 to 2
9 percent of the population being afflicted with
10 fibromyalgia. Chronic fatigue syndrome affects less than
11 1 percent of the population, using the old criteria but
12 using the new criteria, which Dr. Gantz just went over,
13 probably is closer to 1 percent of the population and I
14 already talked about how that was defined.
15 Somatoform disorders. I have a problem with
16 the whole notion of somatoform disorders and I argue
17 constantly with my colleagues who are psychiatrists and
18 with people who are psychiatrists that aren't my
19 colleagues because psychiatrists have this notion that the
20 presence of multiple physically unexplained symptoms gives
21 you the label of somatoform disorders or somatization
22 disorder.
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1 The problem is, is that as we come further and
2 further in research, these aren't physically unexplained
3 symptoms, that there are a variety of objective
4 abnormalities that we can identify in people with
5 fibromyalgia and chronic fatigue syndrome that are either
6 wholly responsible for these symptoms or are largely
7 responsible for these symptoms.
8 So the notion that this is a psychiatric
9 disorder, I have a lot of problems with. But giving the
10 term somatoform disorders, I probably have even more of a
11 problem with because then it sort of allows someone to ask
12 the person what age they were toilet-trained at and if
13 they were toilet-trained too early, then all of a sudden
14 that is cause of all their illnesses and that is the
15 reason that they got an illness after going to the Gulf
16 War, which doesn't make any sense at all.
17 And then finally we have the Persian Gulf
18 Syndrome which, unlike all these other syndromes, is not
19 defined by clinical features. It is defined by
20 participation in the Gulf War and by having unexplained
21 symptoms after coming back from the Gulf War.
22 I would contend that these aren't really
194
1 unexplained symptoms given what we know about chronic
2 fatigue syndrome, fibromyalgia, and all of these other
3 related entities. I think we don't yet know what
4 triggered these symptoms and whether there could have been
5 toxins or other types of exposures that triggered these
6 symptoms.
7 What I will try to present to you is a
8 hypothesis or a mechanism by which people could have
9 developed these illnesses without any toxin exposure or
10 without any kind of environment exposure because we know
11 that that can occur in idiopathic chronic fatigue syndrome
12 and fibromyalgia.
13 And so this just goes through some of the
14 reasons for the overlap which I just went over. And this,
15 which no one in the room except me, probably, can read, is
16 a diagram or a chart showing the clinical features of all
17 these entities -- Persian Gulf Syndrome, somatization
18 disorders, fibromyalgia, chronic fatigue syndrome, and
19 multiple chemical sensitivity.
20 There are only a couple of things here that I
21 want to point out. One is that when you add up the
22 defining features of each of these illnesses and the
195
1 nondefining features -- the other features that occur in
2 individuals with these illnesses -- these illnesses become
3 almost inseparable.
4 It would be almost impossible to say that
5 someone -- that somatization disorder is a discrete group
6 from fibromyalgia. In fact, it would be impossible
7 because there is so much overlap between these groups of
8 patients. The other is that from a
9 demographic standpoint, all of these illnesses occur more
10 commonly in women. We don't understand. From an
11 epidemiologic standpoint, they affect around 1 to 4
12 percent of the population, depending on, as Dr. Gantz
13 says, the exact definition that you use. So these are not
14 uncommon entities.
15 And then finally the proposed triggers for each
16 of these are slightly different but what comes up over and
17 over again are different types of biological stressors.
18 And I know that the word stress is a bad word to use when
19 you are talking to groups of patients about fibromyalgia
20 or chronic fatigue syndrome or about the Persian Gulf
21 Syndrome.
22 But what I am talking about is biological
196
1 stress, not the sort of lay connotation for stress. And
2 what we know is that whether you are talking about rats or
3 mice or humans is that biological stress has a profound
4 physiologic effect and that, in particular, inescapable or
5 unavoidable biological stress has a profound physiologic
6 effect.
7 And what I am going to go through is talk about
8 how abnormalities and how someone responds to different
9 types of immune, physical, emotional, or perhaps toxic
10 stressors may be a trigger or, if you will, the cause for
11 developing this spectrum of illnesses.
12 Just to spend a little bit of time here talking
13 about people with fibromyalgia and chronic fatigue
14 syndrome and the notion that Dr. Gantz alluded to is that
15 we -- many researchers, including myself, feel that there
16 is a genetic or a familial predisposition to develop not
17 only fibromyalgia or chronic fatigue syndrome but it is
18 very well-established, for example, that migraines or
19 irritable bowel syndrome have a genetic or a familial
20 predisposition.
21 So some of the allied conditions that have been
22 better-studied clearly have a familial or a genetic
197
1 predisposition. And when you see individuals with chronic
2 fatigue syndrome or fibromyalgia in clinic, you see them
3 at the end when they finally develop a systemic disorder
4 that we call CFS or fibromyalgia.
5 But when you do a careful history, what you not
6 uncommonly find is that many of those illnesses -- the
7 syndromes or symptoms that I showed on the diagram of the
8 woman in red with all the things going around it -- that
9 earlier in their lives, that they have experienced many of
10 these different kinds of symptoms and syndromes, all of
11 which likely might have a common pathogenesis or common
12 pathogenic mechanisms.
13 There may be common pathogenic mechanisms that
14 lead to migraine headaches, irritable bowel syndrome,
15 affective disorder such as depression or anxiety, and the
16 systemic illnesses that we call fibromyalgia or chronic
17 fatigue syndrome.
18 So even though we sometimes leave people with
19 the notion that their illness started at a certain point
20 in time because that is when their most severe symptoms
21 started, it is rare that when you go back in the life of
22 an individual that ends up developing chronic fatigue
198
1 syndrome or fibromyalgia, that you don't find a personal
2 history or a strong family history of these other kinds of
3 illnesses which I was speaking about.
4 These are some of the hypotheses that have been
5 proposed regarding the pathogenesis of fibromyalgia as
6 well as related conditions. Because people with
7 fibromyalgia hurt in their muscles and because we had this
8 notion until recently that it was their muscles that were
9 the problem, we started by looking at whether there were
10 abnormalities in the skeletal muscle that were causing the
11 pain in the skeletal muscle.
12 And most of the people in the fibromyalgia
13 community have come to the conclusion that there is
14 nothing wrong with the skeletal muscle in people with
15 fibromyalgia for a number of reasons, not the least of
16 which is that we have learned that people hurt all over.
17 If you push on the thumbnail of an individual
18 with fibromyalgia, they have much more pain in their
19 thumbnail or their forehead than if you pushed on someone
20 who doesn't have fibromyalgia or chronic fatigue syndrome.
21 Obviously, there is not muscle in that region and so it
22 would be difficult to postulate that an abnormality in
199
1 muscle was causing this problem.
2 Others have and still contend that fibromyalgia
3 and chronic fatigue syndrome are primary psychiatric
4 disorders. Once again, I could talk an hour on this whole
5 topic. There is a ton of data on this topic. But in
6 general, here is a couple of things that we know about the
7 relationship between psychiatric disorders and CFS or
8 fibromyalgia.
9 One is that only about a third or 40 percent of
10 people with chronic fatigue syndrome or fibromyalgia have
11 any identifiable psychiatric disorder, if you don't count
12 somatoform disorders -- if you don't count that sort of
13 wastebasket term that allows a psychiatrist to label
14 someone as having a psychiatric disorder when they just
15 have physical complaints.
16 So if you take out somatoform disorders, there
17 is only about a third or 40 percent of individuals with
18 any of these illnesses that have a psychiatric disorder.
19 So what you then have to do is figure out what is causing
20 the fibromyalgia in the other 60 percent. If only a third
21 or 40 percent have any identifiable psychiatric disorder
22 and the other 60 percent have the exact same symptoms, it
200
1 doesn't make sense that the cause is a psychiatric
2 disorder.
3 The other problem is that the psychiatric
4 disorder usually comes after the chronic fatigue syndrome
5 or fibromyalgia. Not always, but in most cases you find
6 that the individual has fatigue, has pain, goes to the
7 doctor and they can't be helped because of these
8 complaints, and then develop the depression or the anxiety
9 or some of the things that result.
10 And so the notion that these are primary
11 psychiatric disorders -- the data supporting that is not
12 very strong. Dr. Gantz mentioned the fact that this may
13 be an infectious or an immune disorder and I will talk
14 about that in a minute and try to -- my own feeling is
15 that this is not an infectious disorder and that the
16 abnormalities that we see in the immune system are
17 epiphenomena. That is, they occur as a result of the
18 disease rather than being the cause of the disease. But
19 that is my theory. There are very credible researchers
20 who would counter that theory.
21 And what I think and what many people have come
22 to feel is the cause of fibromyalgia and, to a lesser
201
1 extent, some of these other conditions such as chronic
2 fatigue syndrome, are central mechanisms -- mechanisms
3 involving the brain and the spinal cord that are involved.
4 The phenomena suggesting an infectious cause
5 for CFS, if you look down the left, are the data that
6 support an infectious cause of chronic fatigue syndrome.
7 In many cases, there is acute onset of flu-like symptoms
8 that lead to the development of chronic fatigue syndrome.
9 The problem with that is that people develop
10 the exact same symptoms of either fibromyalgia or chronic
11 fatigue syndrome after being exposed to physical trauma
12 such as motor vehicle accidents or being exposed to
13 emotional trauma. And so the notion -- I feel that
14 infections very well may trigger fibromyalgia or chronic
15 fatigue syndrome but the data supporting that a continued
16 infection is the cause for chronic fatigue syndrome or
17 fibromyalgia, in most cases, is really lacking and is
18 quite minimal.
19 The notion that CFS has been known to occur in
20 clusters is used as evidence suggesting an infectious
21 cause. But once again, the most recent study done by the
22 CDC which I think Dr. Gantz was referring to -- I don't
202
1 know the name of the town but the small town in Michigan.
2 When they looked at this town, sure enough, the
3 reports were accurate that there was a cluster of chronic
4 fatigue syndrome in this town and when they looked, they
5 found that 1 percent of the -- 1 to 2 percent of the
6 individuals who lived in this town in Michigan had chronic
7 fatigue syndrome.
8 But the CDC, being good scientists, went in and
9 did the same study in a controlled town about 80 miles
10 away in Michigan and lo and behold, they found that 1 to 2
11 percent of the individuals in this town that had none of
12 the same environmental exposures, they had none of the
13 same risk factors for developing chronic fatigue
14 syndrome -- the rate was exactly the same. It was 1 to 2
15 percent.
16 So what you see is that when you have an
17 illness like this that may be present and unrecognized in
18 the general population, you can very easily get the
19 appearance of clusters or the appearance of epidemics
20 because of publicity, because of the fact that people
21 start talking about it and they say, Well, yes, I have
22 those symptoms, too.
203
1 It is not that the people are malingering or
2 that they are making up the symptoms. They very -- they
3 do have these symptoms and the symptoms are very real. It
4 is just that it is not until you do careful epidemiologic
5 studies are you able to sort out a true epidemic from what
6 this -- what I would term a pseudo-epidemic.
7 And then finally the changes in immune function
8 which has been noted in chronic fatigue syndrome and which
9 have been used as evidence for this being a viral or an
10 immune problem. These same changes occur in a variety of
11 different stressful conditions.
12 They are very nonspecific. They occur in
13 spouses of Alzheimer's patients. They occur in
14 individuals released from desert training episodes or
15 prisoner-of-war camps. They occur in students taking
16 final exams. And so the low natural killer cell function,
17 the slight changes in T-cell function can occur in many
18 different settings that aren't accompanied by chronic
19 fatigue or chronic pain. And thus the data supporting the
20 fact that these are causal really weakens when you look at
21 that evidence.
22 This is our hypothesis and any number of
204
1 individuals'. This is not something that I was the one to
2 develop. There is a number of individuals at the NIH that
3 were probably the first to come up with this hypothesis.
4 And that is that the human stress response, which consists
5 of the autonomic nervous system, the hypothalamic-
6 pituitary axes, and what are called descending
7 antinociceptive pathways. These are pathways that begin
8 in the brain, go down the spinal cord, and are responsible
9 for inhibiting the upward transmission of pain.
10 The abnormalities in a number of these
11 different areas may be responsible for leading to the
12 symptoms that we see in chronic fatigue syndrome or in
13 illnesses such as migraine headaches or irritable bowel
14 syndrome. I am not going to spend any time on this. It
15 is very busy and, once again, this is a lecture in and of
16 itself -- the biology of the stress response.
17 I just wanted you to focus on the top left. It
18 says the human stress response is stimulated by acute
19 stressors such as physical or emotional input when we
20 perceive it by our eyes or by our emotions. It can be
21 stimulated by a nerve activation and it can be stimulated
22 by certain types of neuromodulators such as serotonin,
205
1 vasopressin, or acetylcholine.
2 And on the other hand, it is inhibited by a
3 number of different things. And this is a biological
4 stress response that I am talking about, that there is a
5 lot of data supporting the fact that this is abnormal in
6 individuals with chronic fatigue syndrome and
7 fibromyalgia.
8 We don't know exactly why it becomes abnormal
9 but we do know that the physiologic consequences of it
10 becoming abnormal are very similar to the symptoms that we
11 see in chronic fatigue syndrome and fibromyalgia. And so
12 this is possibly the mechanism of the pathogenesis of
13 Persian Gulf Syndrome.
14 An individual is deployed to the Gulf War.
15 They may or may not have a genetic predisposition to
16 develop this spectrum of illness. They are exposed to
17 numerous stressors. Once again, it is conceivable that
18 toxins are one of these types of stressors although that
19 has not really been established, that any toxins that I am
20 aware of directly stimulate the human stress response.
21 We know that both physical stressors and
22 emotional stressors were prevalent in the Gulf War. And
206
1 then what happened is, when these individuals have the
2 illness, they have blunting of the stress response
3 characterized by abnormalities in the autonomic nervous
4 system, abnormalities of diffuse increased nociception, or
5 increased pain throughout their entire body, a number of
6 different hormonal abnormalities that occur, all of which
7 may contribute to the symptomatology that we see in
8 chronic fatigue syndrome and fibromyalgia as well as in
9 the Persian Gulf Syndrome.
10 And then finally, just talking about treatment
11 of fibromyalgia and related conditions. The main stage of
12 treatments are low doses of tricyclic compounds, tricyclic
13 compounds being antidepressant by design but the dosages
14 that we use in fibromyalgia and chronic fatigue syndrome
15 are nowhere near the dosages that are effective as
16 antidepressants.
17 And when you give these drugs, you have to be
18 very careful about how you give these drugs. You have to
19 start at a very low dose and go up very slowly on the dose
20 or else people are intolerant of these drugs because of
21 the general chemical hypersensitivity that individuals
22 with chronic fatigue syndrome and fibromyalgia have.
207
1 I do mainly tertiary care of fibromyalgia. I
2 get people that other rheumatologists or other people
3 haven't been able to make better. And so everyone that I
4 get with fibromyalgia has already been on both Elavil and
5 Flexeril, which are amitriptyline and cyclobenzaprine.
6 And the patients come in to me and they say
7 these drugs didn't help. If you retry the drugs, you
8 start at a very low dose. You very slowly escalate the
9 dose. In many cases, you find that these drugs are very
10 beneficial. A lot of it has to do with knowing how to use
11 these medications.
12 Aerobic exercise, in my view, is the single
13 most beneficial therapy for people with chronic fatigue
14 syndrome or fibromyalgia. The trick is getting people to
15 feel well enough that they can do their aerobic exercise.
16 And in that instance, what we have to do is use
17 medications to make their symptoms better so that they can
18 then tolerate aerobic exercise programs.
19 What I always say when I give talks to either
20 support groups or physicians that if I was stranded on a
21 desert island with 100 fibromyalgia or CFS patients, which
22 most physicians would view as sort of a scary proposition,
208
1 and all I had is one modality, it would be aerobic
2 exercise.
3 I am firmly convinced that there is something
4 about aerobic exercise that is tremendously beneficial.
5 And on the other hand, there is something about making
6 people stop a regular aerobic exercise which have occurred
7 as part of their deployment to the Gulf War that may be
8 very harmful.
9 It may be that stopping regular aerobic
10 exercise -- people that were exercising five miles a day
11 and wouldn't miss it and stop doing regular aerobic
12 exercise because of some of the conditions involved in the
13 Gulf War -- that that in some way could have precipitated
14 this spectrum of illness.
15 And then finally, other more anecdotal types of
16 treatment. Other antidepressants such as serotonin
17 reuptake inhibitors, newer drugs, analgesics or, as Dr.
18 Gantz was referring to, the treatment of specific
19 syndromes -- or, symptoms such as insomnia, neurally-
20 mediated hypotension, multiple chemical sensitivity.
21 When individuals have these other syndromes,
22 you can address multiple chemical sensitivity by
209
1 avoidance. You can address neurally-mediated hypotension
2 by giving low doses of beta blockers or Florinef or other
3 drugs that will raise the blood pressure.
4 But the more global approach of giving low
5 doses of tricyclics and using aerobic exercise is more
6 globally beneficial in leading to an improvement in all
7 symptoms in individuals with these illnesses.
8 So in summary, fibromyalgia is not a discrete
9 entity. There is considerable overlap between this
10 disorder and a number of other systemic and organ-specific
11 disorders that fall within the spectrum of illness. The
12 unexplained symptoms that are present in many Gulf War
13 veterans are all very common in fibromyalgia and related
14 disorders.
15 There are plausible pathogenic mechanisms for
16 the development of these symptoms other than exposure to
17 environmental agents. And don't get me wrong. I am not
18 by any means saying that that didn't play a role or that
19 couldn't play a role. I am just saying that it doesn't
20 have to have played a role in the development of illness.
21 And then finally that there are effective
22 treatments for fibromyalgia and related conditions that
210
1 have not been studied in individuals with unexplained
2 illnesses associated with the Gulf War. And I will stop
3 there and take any questions.
4 DR. LANDRIGAN: Thank you very much, Dr. Clauw.
5 Questions from the panel?
6 DR. LASHOF: Can I draw your attention to your
7 chart on epidemiology? In that chart, you suggest that
8 chronic fatigue syndrome is 1 percent of the population
9 and fibromyalgia is 2 to 4 percent. And you are
10 considering these as separate entities, I assume, so that
11 one could add it and say, We have 3 to 5 percent.
12 If somatization disorder occurs in another 4
13 percent, are we really talking that among those three,
14 somatization, fibromyalgia, and chronic fatigue would
15 occur in 8 to 9 percent of the population?
16 DR. CLAUW: No. It is probably more like 1 to
17 4 percent because if you look at the Venn diagram, what
18 you see is that the highest prevalence is somatoform
19 disorders, which is 4 percent. And that -- and almost
20 everyone that has either fibromyalgia or chronic fatigue
21 syndrome would likewise meet criteria for a somatoform
22 disorder.
211
1 Most people who have either chronic fatigue
2 syndrome or fibromyalgia meet criteria for the other
3 disorder as well. So no, it doesn't -- it is not additive
4 because there is so much overlap. The total percentage,
5 though, in the population is probably in the range of 1 to
6 4 percent and there are good data to back that up,
7 particularly in fibromyalgia and in somatoform disorders.
8 Like I said, the new CFS criteria have not been
9 tested in population-based studies so I am using the 1
10 percent figure as a rough estimate only because almost
11 everyone who has fibromyalgia meets those criteria.
12 DR. LASHOF: We would then need to see if it is
13 generally 1 to 4 percent of the total population for us to
14 show that there is a Gulf War illness -- Persian Gulf War
15 illness, we would have to see it in more than 4 percent of
16 the Gulf War veterans or it could be coincidental and they
17 could have --
18 DR. CLAUW: Right. You could be just picking
19 up the background rate. But my reading of the literature
20 and the studies that have been done suggest that it
21 exceeds that rate. And I -- once again, my personal
22 opinion is that there isn't any doubt that there are
212
1 individuals who weren't ill when they went. They were ill
2 when they came back. And that these types of symptoms are
3 the symptoms that we see commonly in fibromyalgia and
4 chronic fatigue syndrome.
5 DR. LASHOF: But I guess the question is
6 whether there is any way -- what kind of triggers and what
7 kind of evidence one needs to look for to be able to
8 associate the development of the symptoms as being due to
9 presence in the Gulf War versus occurring if they had not
10 have gone.
11 They couldn't have been that population that
12 would have developed this. I am not saying that is the
13 case.
14 DR. CLAUW: Right.
15 DR. LASHOF: But from your presentation, that
16 could be a conclusion. I would like you to comment on
17 that.
18 DR. CLAUW: Well, it is a very good comment.
19 And I guess this is probably a roundabout way of getting
20 around your question because we don't -- it would be very
21 difficult to do the type of study that you are suggesting,
22 as to looking at the specific triggers that might have
213
1 caused the Gulf War would be impossible now. That kind of
2 study would almost need to be done prospectively because
3 there were so many different triggers -- the potential
4 triggers that these people were exposed to: physical
5 stress, emotional stress, and perhaps toxins or different
6 kinds of immune stress such as infections.
7 I guess my feeling as both a treating physician
8 and as a researcher is that what we need to focus on is
9 the bottom part, is where people are right now. It
10 doesn't really matter -- when you take care of someone
11 with chronic fatigue syndrome or fibromyalgia, it doesn't
12 matter if they got it as a part of an infectious prodrome
13 or if they got it after a motor vehicle accident or if
14 they got it after their mother died.
15 What they have -- the symptoms they have are
16 all the same and they are treated the same. They are not
17 post-infectious chronic fatigue syndrome and post-
18 traumatic fibromyalgia and post-emotional whatever you
19 might want to call it all really look the same.
20 And I think what we need to be focusing on is
21 what happens to the body that leads these symptoms to keep
22 going on and on well after the stressor, well after the
214
1 person has that type of exposure. And that is -- as a
2 researcher, that is the kind of thing that I am focusing
3 on, is looking at how -- why does someone have a headache?
4
5 Why do they have muscle pain? Why do they have
6 a bowel that has intermittent diarrhea, constipation? And
7 we are getting closer. We are looking at, you know,
8 abnormalities in autonomic function, abnormalities in
9 nociception can be identified in these individuals.
10 We just have to test these hypotheses and look
11 in control groups and make sure that what we are looking
12 at are true observations rather than another set of
13 epiphenomena.
14 DR. LANDRIGAN: Other questions? Yes.
15 MAJOR KNOX: Have you treated Gulf War veterans
16 for this syndrome yourself?
17 DR. CLAUW: Only a couple.
18 MAJOR KNOX: Only a couple.
19 DR. CLAUW: Three or four.
20 MAJOR KNOX: And they responded to the therapy?
21 DR. CLAUW: Yes. But I wouldn't make a claim
22 that I am going to be able to successfully get all Gulf
215
1 War veterans better. I do think, though, that there is a
2 very -- there is a lot of expertise in treating this group
3 of illnesses and unfortunately a lot of people don't have
4 it.
5 And that expertise doesn't happen to be
6 centered in the VA medical centers. And so, you know,
7 when I have talked to people at the VA -- I am -- I was on
8 staff at the VA. Now I still have an appointment at the
9 VA. Or when I have talked to people in -- at Walter Reed
10 in the federal government that are looking at treating
11 these illnesses, my -- and it is nothing against them but
12 I don't think they really know how to treat this spectrum
13 of illness.
14 These aren't the people like myself that have
15 sort of devoted their life to doing research in it or
16 devoted their life to treating this spectrum of illness.
17 And the worst thing that you can do is confront an
18 individual with this spectrum of illness and tell them it
19 is all in their head.
20 And that is what happened. That is what
21 happened to these individuals. And it is not all in their
22 head. It is -- it might originate in their head. There
216
1 may be central mechanisms by which these symptoms occur
2 but once -- and then what happens is, people develop
3 distrust of the whole medical profession, of the whole
4 healthcare system and it is a self-perpetuating cycle.
5 Once again, I see it over and over again in
6 individuals with fibromyalgia and chronic fatigue
7 syndrome. The same thing happens where they originally
8 have the symptoms. They present for medical attention.
9 They are alienated, sort of, and then from that point
10 further, it is very hard to sort of break into that cycle.
11 MAJOR KNOX: And can you speak to the doses
12 that you begin patients on -- the low tricyclic doses?
13 DR. CLAUW: Both of those drugs, amitriptyline
14 and cyclobenzaprine, the lowest dose that they are
15 available in are ten milligrams. And in many cases, you
16 have to have them cut the tablet in a quarter or a half.
17 Start taking it two to three hours before bedtime or else
18 the person will be drowsy for two days afterwards.
19 Educate the person that even when they take a
20 quarter of a tablet and when they take it two to three
21 hours before bedtime that there are certain side effects
22 they are going to have that are predictable but those will
217
1 get better and better with time.
2 My strong contention is that those are the two
3 most effective drugs if you use them correctly in that
4 those are among the only drugs that will lead to a global
5 benefit in symptoms rather than antidepressants which may
6 help someone's depression but don't do anything for their
7 pain, don't do anything for their fatigue.
8 These drugs seem, for reasons that aren't
9 clear, to be effective in treating the syndrome more
10 globally rather than just specific syndromes or specific
11 symptoms of the illness.
12 DR. LASHOF: Have you done any double-blind
13 controlled studies of that therapy in --
14 DR. CLAUW: I haven't. Other people have.
15 Both amitriptyline and cyclobenzaprine have been shown in
16 multiple double-blind placebo-controlled studies to be
17 effective in fibromyalgia. That hasn't been done in the
18 Persian Gulf Syndrome patients but it has been shown to be
19 effective in fibromyalgia.
20 In fact, everything that I listed as proven has
21 been shown in at least two double-blind placebo-
22 controlled -- cognitive behavioral therapy, aerobic
218
1 exercise, and amitriptyline and cyclobenzaprine. The ones
2 I labeled as anecdotal either have only been done in one
3 study or are just that, anecdotal.
4 DR. LANDRIGAN: Okay. Thank you very much.
5 Nice presentation. We have reached a happy state of
6 affairs. We are about 12 or 13 minutes ahead of schedule.
7 There is one young lady that came forward this morning and
8 wanted to present. We couldn't put her in this morning.
9 I don't know your name, ma'am, but you be
10 willing to come forward now? Is this a good time for you?
11 And if you would, introduce yourself. Ms. Joanne Rigdon.
12 Ms. Rigdon, if you would come on up, we will be glad -- if
13 you can keep it to five minutes or thereabouts as did our
14 speakers this morning, please.
15 MS. RIGDON: I want to thank you for this
16 opportunity. Can you hear me?
17 DR. LANDRIGAN: Yes. But the recording --
18 maybe she -- could you hold the mike in your hand? Would
19 that be convenient?
20 MS. RIGDON: Okay. Is that better?
21 DR. LANDRIGAN: Yes.
22 MS. RIGDON: I want to thank you for the
219
1 opportunity. This -- I was not expecting it so I am not
2 totally prepared.
3 DR. LANDRIGAN: I am sorry I didn't -- I
4 couldn't forewarn you but it looked like a good chance.
5 MS. RIGDON: That is all right. My name is
6 Joanne Rigdon. I was a chief petty officer in the Navy
7 when I was called to active duty and sent to the Persian
8 Gulf. I came down with an infection immediately after I
9 got there -- an upper respiratory infection that was
10 pretty severe.
11 And while I was on quarters with this
12 infection, I received the anthrax injection, which I found
13 out later I should not have received under those
14 circumstances. But I was there for three months and I was
15 airlifted out of there with an injury and came back to the
16 States.
17 And I was in therapy for a year. I had two
18 surgeries on my shoulder. And when I got out of therapy,
19 I was discharged from the Navy and returned to -- or, not
20 discharged, released from active duty and returned to San
21 Antonio to continue my civilian career.
22 And I think within 90 days, I was developing
220
1 symptoms of convulsions -- well, mainly convulsions at
2 that time. And subsequently I got to where I was having
3 convulsions three and four times a day that were totally
4 uncontrolled.
5 I have been in and out of the hospital several
6 times. I have had a number of other kinds of diagnoses.
7 I don't know if they are specific diagnoses or if they are
8 just sort of suggestions of what might be wrong but I have
9 been told that I have had encephalitis, I have
10 fibromyalgia, probably the chemical sensitivity syndrome.
11 I do have a blood disorder. I do have a
12 difficulty walking. I can walk but not without some sort
13 of assistance. I have lost my driver's license. I have
14 lost my civilian career. I have been discharged from the
15 military. I did receive a 20 percent disability for all
16 of my inconvenience.
17 I have nothing from active duty whatsoever.
18 But I have received care from the VA for the last probably
19 three to four years. It has been somewhat frustrating at
20 times, somewhat very rewarding at times. Right now, I am
21 under the care of a rheumatologist who has been
22 exceedingly helpful.
221
1 But I have been told everything from, You are
2 not entitled to VA care, to, Why are you wasting our
3 time?, to, Why didn't you come here to begin with?
4 And I was also told by one of my doctors -- I
5 asked him if he would please review the medical records
6 that I had in the civilian community. He said, I have.
7 He said, I have spent more time looking at your file than
8 anybody else's. And he says, And that is a real shame
9 because some of my other patients are really sick.
10 And I thought, What do you think that tells me?
11 That tells me that there is nothing wrong.
12 And they have been telling me this for four
13 years, that I do not have a disability. That it is, if
14 anything, psychological. That my convulsions are more
15 than likely brought on by psychological problems that I
16 had prior to the Gulf War.
17 I cannot prove that I was healthy before I went
18 overseas because all of my medical records disappeared. I
19 have nothing from the years that I was in the Reserves
20 before I went overseas. It has really been a struggle.
21 Right now, I don't work. I don't drive. There are a lot
22 of things I don't do anymore that I used to do a lot.
222
1 But I do go to school. The VA is sending me to
2 vocational rehabilitation training and I appreciate that
3 very much. And I do appreciate the VA hospital. It has
4 been extremely kind on some occasions and I do have some
5 very good friends there. Some people I would rather not
6 see again there, also, but I really would encourage
7 anybody who has any influence at all with the VA, I would
8 encourage you to pursue this.
9 Whatever this problem is, whether it is a
10 syndrome, whether it is an illness, whether it is a
11 figment of my imagination -- I don't really care. Just
12 tell me what it is and help me get over it.
13 DR. LANDRIGAN: Thank you very much, Ms.
14 Rigdon. How long were you in the Reserves? How many
15 years did you serve?
16 MS. RIGDON: Twelve years.
17 DR. LANDRIGAN: And then?
18 MS. RIGDON: And then I had 15 months of active
19 duty.
20 DR. LANDRIGAN: Was this the only time you ever
21 did full-time active duty?
22 MS. RIGDON: Yes.
223
1 DR. LANDRIGAN: Okay. Other questions?
2 MAJOR KNOX: I have one. Can you tell us what
3 caused you to be Med-Evac'd home?
4 MS. RIGDON: My shoulder injury.
5 MAJOR KNOX: A shoulder injury. Did you have
6 any head injury at the time?
7 MS. RIGDON: No. They sent me back to the
8 States for, well, diagnostic care because they -- one of
9 the doctors who saw me thought maybe I had a tumor in my
10 arm. And I didn't but --
11 MAJOR KNOX: What is your 20 percent disability
12 related to?
13 MAJOR KNOX: It was related to seizures. They
14 have now upped that to 40 percent. They gave me another
15 20 percent for my left shoulder because I do have -- well,
16 I don't have complete use of my left arm. But I have
17 nothing yet for any of these other kinds of problems that
18 I am experiencing.
19 MAJOR KNOX: And you don't pay for any of your
20 care that you receive at the VA, do you?
21 MS. RIGDON: Not for what I receive at the VA.
22 But I receive a lot of care from the private sector
224
1 because I spent all of my initial -- well, all of my
2 initial treatment -- my initial two months in the hospital
3 and everything else was done in the private sector because
4 I was told I was not eligible at the VA for treatment.
5 DR. LANDRIGAN: Okay. If there are no more
6 questions, then thank you very much. We really appreciate
7 your coming forward.
8 MS. RIGDON: Thank you.
9 DR. LANDRIGAN: Let's take a break now. Let's
10 see if we can keep it to 15 minutes. It is now 2:30 so we
11 will come back at a quarter to 3:00. Thanks.
12 (Whereupon, a short recess was taken.)
13 DR. LANDRIGAN: All right. Let's please resume
14 our seats and continue the meeting. Well, our next
15 speaker this afternoon is Dr. Edward Hyman from New
16 Orleans, Louisiana. Dr. Hyman's topic is bacteriuria and
17 antibiotic treatment. Dr. Hyman.
18 DR. HYMAN: I will start off with a video.
19 This is a video of my first patient that I took with a
20 video camera.
21 (Whereupon, a videotape was played.)
22 DR. HYMAN: Thank you for inviting me. I sent
225
1 in my curriculum vitae. I don't know if it was
2 distributed but let me briefly say that I am a veteran in
3 the Navy of World War II. I am one of the youngest
4 graduates at Johns Hopkins Medical School ever.
5 I interned at Barnes at Washington University
6 of St. Louis. Residency at Stanford and research at
7 Stanford. And into the Brigham at Harvard where I
8 peacefully left -- gave up a subsequent appointment to go
9 out to see disease in the real world before it is tampered
10 with and sent to a so-called tertiary center.
11 Published in Nature and publications of the
12 American Chemical Society and the Biophysical Society, the
13 Lancet, the New England Journal of Medicine, Biotech, and
14 Histochemistry, a pathologists' journal on staining
15 technology primarily, and the work on this is in the
16 international publication called Nephron because the
17 findings are largely in the urine and I think a major
18 change will occur because of that.
19 If 5 to 10 percent of 700,000 military persons
20 who were briefly in a small geographic area came down with
21 a single illness, that is an epidemic and you must suspect
22 that something happened to them there. If 50,000 military
226
1 and VA doctors have not been able to find the illness in a
2 1,400-page textbook in the five years since, then you must
3 conclude that it is not in the textbook, code book, or
4 what I call a cookbook.
5 What about the stress syndrome and the
6 psychiatric diagnoses? I personally performed separation
7 physical examinations on many hundreds of Marines who
8 pushed bayonets into Japanese soldiers for three years in
9 the South Pacific islands. I did not find a single one
10 with the so-called stress syndrome after those three years
11 of extreme stress.
12 I cannot believe that the 100-hour war caused
13 an epidemic of the stress syndrome. Like any other
14 poorly-defined disease, a psychiatric diagnosis is then
15 made by default. Applying this label without
16 justification is a disgrace to those who served my country
17 in war.
18 Nature of the illness. In 1992 when I saw
19 these sick veterans on television, I realized I had been
20 studying their illness for about 30 years. It is an
21 illness which was familiar to doctors 50 years ago but
22 which has been lost from the textbooks since.
227
1 This illness, which I have found in each
2 veteran and family member that I have encountered -- and
3 that is some 40 to 50, including one of the multiple
4 chemical sensitivity syndrome discussed here this morning.
5 The illness is a bacteremia, usually a streptococcal
6 bacteremia.
7 By that, I mean the sick veterans have germs,
8 usually streptococci, floating around in their blood. And
9 as they float in the blood, they reach every organ in the
10 body: the joints, the muscles, the brain, the liver, the
11 heart, the lungs, the kidneys, the skin, et cetera, and in
12 females, the uterus.
13 The resulting illness manifests almost
14 universally as chronic fatigue but with pains in muscles
15 and fibrous tissue or fibromyalgia, with nerve and mental
16 findings, neuritis and brain loss, with lung impairment,
17 with arthritis of one kind or another, with skin rashes
18 usually that itch, with blood changes, et cetera. The
19 illness appears to be mildly contagious. Chemical
20 afflictions are not.
21 As postulated in the 1920s and demonstrated in
22 the 1930s, streptococci enter the blood following a tooth
228
1 extraction. patients who have a bad heart valve or a
2 heart deformity may get a fatal heart infection, bacterial
3 endocarditis. That is why dentists today give penicillin
4 prophylaxis before dental work.
5 Since the 1930s, there must be a hundred papers
6 in the medical literature demonstrating that many events
7 other than pulling a tooth result in streptococci entering
8 the blood stream. By improving the method of detecting
9 the germ, several investigators have shown that apparently
10 normal people have these germs in their blood without
11 symptoms and without an initiating event such as pulling a
12 tooth.
13 Comparable events occur in other infections.
14 For example, 10 percent of persons with lung tuberculosis
15 have TB germs floating in their blood, going to every
16 organ in their body, and coming out in the urine. In
17 syphilis or Lyme disease, most victims have the germ in
18 their blood, going to every organ in the body.
19 I have found and published that virtually every
20 healthy person has dead streptococci or like germs in his
21 urine. That is published in Nephron. They come from the
22 blood by way of the kidney. But dead germs were once
229
1 alive, and alive inside the body.
2 However, in many illnesses classified as
3 illnesses of individual organs, the number of blood-
4 derived germs I see in the urine goes up 100 to 1,000
5 fold. This number is reduced by antibiotics which benefit
6 or wipe out the illness.
7 This is exactly what happens in Desert Storm
8 Syndrome. In 1992, when I took my first victim of Desert
9 Storm Syndrome that you saw on television in front of a TV
10 camera, the antibiotics which killed the excessive germs
11 and eliminated their telltale residues from the urine
12 restored Navy Chief Petty Officer to health. Now, three
13 years later, he is off medicine and still healthy. Chief
14 Tom Lane was schedule to speak here this morning.
15 What are the specific diagnostic tests I use to
16 diagnose the illness of Gulf War veterans and their
17 spouses? First, I review the extensive medical record,
18 the tens of thousands of dollars of tests already done in
19 their weeks and months in government hospitals.
20 When the veteran gets here, I do a careful
21 history and physical examination. Physical findings are
22 usually minimal except for shortness of breath, overt
230
1 arthritis or brain defects, or small skin pustules. There
2 is a classic one right there and there is a millimeter
3 rule. They are usually no more than a millimeter in
4 diameter and they do not occur in a pore or hair follicle
5 and they come from underneath.
6 These may contain a few yeast, which was highly
7 curious because that may be one of the vectors, and they
8 usually contain some streptococci like those sitting up
9 there. And when you grow them out, you find the
10 intermediary form of Gram-negative streptococci that is so
11 well described in the bacteriology literature and
12 eventually on the second daughter culture, they become
13 classic streptococci. Usually these are much smaller than
14 the classic and then they become classic.
15 I examine a fresh urine by my published
16 technique and I culture that urine for fastidious cocci by
17 an update of the old-fashioned culture technique. Why
18 does the routine laboratory not find the germs? They use
19 a standardized test method which is designed to quickly
20 find a different kind of germ and which is well known to
21 fail to find this sort of streptococci.
22 If one fails to find the germ in one case, then
231
1 that veteran has a strange disease or is sent to a
2 psychiatrist. If the government fails to look in 10,000
3 cases, then 10,000 victims have no diagnosis. If the
4 government waits five years, then the illness may evolve
5 into the classic diseases of individual organs that I
6 started to study 30 years ago. The government will still
7 miss the germs.
8 My individualized approach to treatment. I
9 give antibiotics to target the bacteria that I can detect
10 in the urine within the hour. These bacteria reflect the
11 bacteria in the bloodstream. I give intravenous
12 antibiotics following the golden rule of pharmacology.
13 That is, I give an antibiotic in sufficient
14 dosage to destroy the bacteria that appear to be viable
15 under the microscope or until I encounter adverse effect
16 of the drug which requires me to change. I am quite
17 familiar with the ill effects of each of the antibiotics I
18 use.
19 If the bacteria are not affected by the
20 antibiotic, then under close observation, I may increase
21 the dose of the antibiotic, add a second antibiotic,
22 change the antibiotic, or all three. I continue until the
232
1 excretion of the resulting dead bacteria falls to normal
2 or near normal.
3 For those who prefer a routine procedure,
4 should I get more experience in this disease, I would
5 write a simple algorithm for them to use as a recipe.
6 Unfortunately, medicine has descended to that.
7 I have treated nine U.S. servicemen, one RAF
8 physician, eight to ten wives, and two adolescent
9 children. All of my work has been done without
10 compensation, pro bono. Initially, 100 percent improved
11 noticeably. All the wives and two adolescents have not
12 been sick as long and only one relapsed. She has been
13 successfully retreated.
14 Several military service persons relapsed.
15 They should have been intensively treated for a longer
16 time. Of those who relapsed, all but three were again put
17 in remission either on one or two return visits or by
18 getting some physician or visiting nurse to administer the
19 large doses of antibiotics at home.
20 The RAF physician has found it difficult to
21 return and cannot get medications in England. After two
22 relapses and one retreatment, she is much improved but
233
1 still not well. She also has an immune defect in her CD3
2 and CD4 lymphocytes but she does not have AIDS.
3 The remaining two U.S. veterans would not
4 return for reasons that are not medical. Each remains
5 improved over his pre-treatment status. All of this out-
6 of-town follow-up has been done by telephone and by
7 examining the preserved urine sent by mail.
8 This is not the best way to follow a physician,
9 but that is all that was available. It has been very
10 expensive for me.
11 The following are my thoughts about a link
12 between the presence of bacteria in the urine and -- or,
13 bacteria in the blood and particular exposure in the Gulf
14 theater. First, the cluster means that something started
15 there in a limited time period.
16 A. I cannot link the pattern of clinical
17 illness to any of the warfare chemicals thus far mentioned
18 nor can I relate any chemical to increased susceptibility
19 to bacterial infestation. My mind is certainly not closed
20 on that.
21 Recently, there has been an epidemic of Sarin
22 poisoning in Tokyo. Professor Heyndrickx of Ghent,
234
1 Belgium, recently sent me a few long-term personal records
2 of some of the severe victims. In their clinical follow-
3 ups, the pattern of illness does not resemble the Desert
4 Storm Syndrome.
5 Thus, I do not believe the organic phosphorus
6 poisons or choline esterase inhibitors, with or without
7 pyridostigmine, would serve as a cause of the illness or
8 of the bacteremia found.
9 B. I am fully aware that insertion of a
10 plasmid of DNA into certain bacteria could produce a
11 modified streptococcus or staphylococcus which, upon entry
12 into the human, would set up colonies within the body and
13 could cause an illness just like the Desert Storm
14 Syndrome.
15 I have saved a few of the bacteria isolated.
16 Perhaps without help, I could rule that in or out.
17 However, I would like to have someone look for the
18 abnormal nucleic acid sequence in common, one that would
19 result in the production of certain chemicals by the
20 bacterium.
21 Such a chemical would increase invasiveness by
22 inhalation or by aerosol -- which did occur over there --
235
1 or by transport across the gut membrane or it would set up
2 colonization within the human. That would be a germ
3 willfully modified for the purpose or it may just be a
4 strain indigenous to the area.
5 Such DNA sequences are already known and I am
6 told they take almost a week to create.
7 C. Some retrovirus could set up the patient,
8 even if the viremia was relatively asymptomatic.
9 Clearly the first step is to restore the sick
10 veterans. When I tried to get involved one year after the
11 war, it would have been easier than it will be after five
12 years. The infections seem to get more refractory as time
13 goes by.
14 My role in this adventure has been extremely
15 costly in terms of time, money, and removal from my work.
16 Originally, I thought the best way to show that my
17 thinking was correct was to take sick veterans and restore
18 them. This I have done repeatedly.
19 But even since I stopped taking veterans pro
20 bono, I have spent thousands of hours in totally useless
21 paperwork. My office has a log of over 1,000 veterans
22 begging for help. "I am 27 years old and I cannot work an
236
1 eight-hour day or a 40-hour week. I have lost my job and
2 can't get another. I am bankrupt and I have lost my home.
3 I have a wife and two children. Doc, what do I do now?"
4 The Congress has voted $3.4 million for me to
5 continue my work. The president signed the bill into what
6 I used to believe was law. These funds are still withheld
7 in the Department of Defense. I have letters asking me to
8 create yet another protocol.
9 Two years ago, I got a letter from a two-star
10 general telling me the funds would be sent within a week.
11 Not a cent has come to date. I have jumped through
12 innumerable hoops like a circus animal. Clearly, my
13 government does not want to stand up to its
14 responsibilities to care for the veterans. Unless
15 something happens soon, I see no use in retaining friends
16 in academia to hold their breath along with me.
17 Finally, what has happened is quite painful for
18 me to watch. The Department of Defense has found that the
19 Desert Storm illness is now evolving into known clinical
20 illnesses, the same clinical illnesses with occult
21 bacteria in the blood that I have studied.
22 I have treated hundreds of cases of these
237
1 resulting illness with good success and with precious few
2 adverse effects, even of a mild sort. It is criminal to
3 allow this to happen when so many with this illness can be
4 treated with success.
5 Watching to see how long it takes the illness
6 to evolve reminds me of the well-known, ugly Tuskeegee
7 Experiment conducted by my government decades ago. I urge
8 my president to intervene immediately. Should he not
9 intervene, then with agony, I will return to my work and I
10 will continue to watch as veterans and their families
11 continue to suffer and perish.
12 Thank you for inviting me.
13 DR. LANDRIGAN: Thank you, Dr. Hyman. Are
14 there questions for Dr. Hyman in the panel?
15 DR. LARSON: Dr. Hyman, you are -- what you are
16 saying is, it is the -- it is a long-term occult low-level
17 streptococcemia and streptococcus in the urine. Is that
18 correct? Would you --
19 DR. HYMAN: That is correct.
20 DR. LARSON: Okay.
21 DR. HYMAN: The ones in the urine necessarily
22 and mathematically must come from the blood. And that is
238
1 published in the referee journal. One referee gave an
2 accolade like I have never seen before.
3 DR. LARSON: I am not that familiar with
4 chronic streptococcal infection where you can find the
5 organisms in the blood and the urine for a long period of
6 time. Is it a -- you said it is a Gram-negative
7 streptococci that then becomes Gram-positive so it is a
8 different kind? Does it have a name?
9 DR. HYMAN: I call it systemic coccal disease
10 because it includes so many clinical diagnoses. However,
11 if you go back to the 1910s and 1920s, this was known.
12 They used techniques of drawing the bacteria, which have
13 been abandoned ever since Dr. Cass' landmark paper in
14 1956.
15 No laboratory in the United States, military or
16 civilian, and probably few of any in the world go back to
17 what they used to do or what I learned to do as an intern
18 working for Dr. Barry Wood, who is a microbiologist at
19 Harp [phonetic] and who was head of microbiology at Johns
20 Hopkins when he left St. Louis.
21 This illness is far more common. Recently, Dr.
22 Charles Zierdt at the National Institutes of Health
239
1 published on this. He isolated it from the blood but it
2 takes many weeks and highly specialized technique. All I
3 can say is, that Charles Zierdt congratulated me because I
4 could find it within the hour in the urine.
5 Many particles transfer from blood into urine,
6 leaving very little trace in transit. I am working on
7 that now quietly at my own expense in my own laboratory.
8 DR. LARSON: And then just another question.
9 The $3.4 million was a grant that was granted to you but
10 then it -- you don't know where the money is.
11 DR. HYMAN: It is in the appropriations for the
12 Department of Defense specifically labeled for the use of
13 Louisiana Medical Foundation -- and that is my work -- and
14 it has been hung up by a Dr. Stephen Carl Joseph in the
15 Department of Defense, one of Mr. Clinton's appointees,
16 and he does it at the advice of a Colonel William Bancroft
17 at Fort Detrick -- and I wonder about him because, well,
18 how can you help but wonder about him?
19 They have had several phony reviews and finally
20 one review which followed -- well, General Blanck, to his
21 credit, not understanding this, he chose a civilian
22 professor who is thoroughly familiar with this and wrote a
240
1 contract for him to come down and visit to see what I am
2 doing.
3 And after staring into my microscope for over
4 an hour, he had one remark. We have missed this all these
5 years.
6 In 1993 in December, he recommended to General
7 Blanck that we go ahead and General Blanck has been
8 converted ever since. However, the rest of them have all
9 been tainted by Dr. William Bancroft at Fort Detrick, even
10 when this particular fellow went up to Walter Reed and
11 convinced each member of the committee that it should go
12 through.
13 Frankly, I am sick of their illogical logic or
14 the asinine remarks. I don't know -- I don't see any
15 evidence that my government is interested in tracking this
16 down and secondly, I haven't had a failure yet. I don't
17 know how many of these people can be retrieved. I would
18 wildly guess that 50 to 90 percent of them including,
19 perhaps, the one that had multiple chemical sensitivity
20 this morning.
21 I think this ought to be done. I think we owe
22 it to them. That is my opinion as a Navy veteran myself.
241
1 DR. LARSON: And do you have any sense about
2 the occurrence of this bacteria in the regular population?
3 Do you ever -- have you ever seen it in other people?
4 DR. HYMAN: When you see it in other -- in the
5 regular population, it is already manifested clinically,
6 perhaps as fibromyalgia. They all have chronic fatigue
7 but that is as nonspecific as they come. You can be dying
8 of cancer and have chronic fatigue.
9 That is where I cut my teeth on it. And I
10 really got into it by more ultimately studying the
11 sediment of urine, which has never been done succinctly.
12 And that was my first publication on the subject. And
13 then as I looked for a control, I learned that a control
14 is very difficult to find because the nature of the
15 illness is so diverse that what I have really done is
16 brought the whole thing together as a single entity based
17 upon the cause of illness.
18 I almost got thrown out of medical school in my
19 senior year for doing the same thing on the ward in
20 Baltimore.
21 DR. LARSON: Would you be so kind as to provide
22 us with a -- I guess we do have. We have a bibliography
242
1 from you in your resume.
2 DR. HYMAN: I believe I sent Dr. Brix five
3 pounds of paper.
4 DR. LARSON: Okay.
5 DR. HYMAN: I have 14 linear feet on my shelf.
6 If you have anything --
7 DR. LARSON: Okay. It is here. We have it.
8 Thank you.
9 DR. LANDRIGAN: Dr. Hyman, what is the
10 antibiotic regimen that you use?
11 DR. HYMAN: What, sir? I missed that.
12 DR. LANDRIGAN: What is the antibiotic regimen
13 that you have used on these patients?
14 DR. HYMAN: Dr. Albert Gilman -- I think most
15 anyone who has studied medicine has heard of Goodman and
16 Gilman's textbook of pharmacology -- had a beautiful
17 summary. The dose of any drug is q.s.odd, quantum
18 sufficium odd 2.
19 And many of the drugs that they are supposedly
20 not sensitive to, if you raise the dose, they become
21 sensitive. Now, I learned that in '47 when I was working
22 in the lab with Barry Wood. I will use any one of them
243
1 and I will go after the ones that present -- since the
2 finding of almost always grandpas of cocci, perhaps with
3 some yeast, rarely Gram-negative rods, which is the common
4 garden variety of so-called "urinary tract infection," and
5 I will use any one of the ones that -- and push the dose.
6 If it fails, I will swap or increase the dose
7 or swap or add a second or third one. My ambition is
8 not -- has not been -- and as one who practices medicine
9 as a country doctor for a living -- my ambition is not to
10 establish a protocol for the cookbook doctor to use.
11 My ambition is to cure the patient and I have
12 had remarkable success. Now if the government is
13 interested, what I would like to do -- and I have
14 submitted this as a protocol around August of 1993 --
15 would be to show to their satisfaction that it functions.
16 And I saw your television there. You had one
17 of my patients, Mr. Hollingsworth, who now works with the
18 American Legion, who had a splenectomy in high school
19 following a football injury before he joined the Marine
20 Corps. He is completely retrieved.
21 Another one, whom I told Dr. Brix, who wanted
22 to come to speak is a helicopter pilot who was taken off
244
1 of flight status because he was incapable of handling that
2 flying tank, as he describes it. And then one week after
3 returning to Fort Riley, they put him back on full flight
4 status.
5 I didn't make either decision. I think that is
6 a decision made by a third party. But what I thought the
7 proper thing to do -- and having given anesthesia for the
8 fourth heart operation, I was sitting there watching what
9 happened. After Dr. Blaylock described in the medical
10 literature what he did, he then had a whole bunch of
11 doctors coming from around the world to act like
12 residents.
13 Now, the only way I know to teach this is on-
14 site teaching. Now, before I ever published my first
15 paper on this, I chose the man who has the reputation in
16 academia as the hardest man in the world to convince. And
17 after he -- for a year, he called me nuts or crazy or
18 bananas or something like that.
19 He came down because I stuck with it. And then
20 he slipped his own specimen in and he says, You see, you
21 think it is positive and I am perfectly well. I told him,
22 You are not well. That is all there is to it.
245
1 So he took my reagents back with him to New
2 York and he repeated and repeated and repeated and he was
3 positive every time. About three months later he phoned
4 and he says, You know, now I can remember where I parked
5 my car. I am a different person.
6 He had descended so subtly in civilian life, he
7 didn't realize that he had a reparable disease. Now, this
8 is the way it occurs. However, you have a cluster of
9 persons here. They were all in one place for a short
10 period of time and they came back with something.
11 Maybe something provoked it. Maybe the madman
12 of Baghdad created a particular plasmid which he
13 introduced. And my son, who deals in molecular biology,
14 advises me it would take about a week per organism to
15 produce it. And once you do, you just keep growing it.
16 You go to Home Depot and you get a 26-gallon
17 garbage can and incubate it and you can make a hell of a
18 lot of them. And I remember one patient who says a SCUD
19 missile blew up over his head and the stuff -- the spray
20 that came down was watery. And they called it mustard gas
21 or something like that.
22 The hell it was. It was on his arm for an hour
246
1 before he wiped it off on his pants and that is not
2 mustard gas. It would burn like hell in the meantime.
3 But it sure certain could be a bacterial culture or it
4 could be any kind of culture. It was aqueous.
5 I don't know what happened over there. It is
6 getting too late to find out. I think one root is to
7 isolate enough germs and analyze them sufficiently that
8 you can find a common denominator. I have spoken to my
9 friend Dr. Nicolson and Dr. Nicolson perhaps can be
10 convinced to help. I don't know.
11 I can, myself -- have read sufficiently into
12 the -- what could be the pathogenesis of the whole
13 business, which has fascinated me for 30 years. This is
14 my life work. I think I can test for some of the possible
15 products of many plasmids without any help. I have gone
16 this far without help. I can continue.
17 But I, for the world, can't find out why
18 Colonel Bancroft is so damned convinced that this
19 shouldn't go on. I can't understand it. You sort of get
20 the feeling he is protecting his buttons but I can't prove
21 it. I will answer questions as long as you people are
22 interested.
247
1 DR. LANDRIGAN: Thank you. Let me see --
2 DR. HYMAN: I spent an awful lot of time on
3 this.
4 DR. LANDRIGAN: Let me see if there are any
5 more questions on the panel. No? I think we are out of
6 questions. Sorry. Dr. Lashof.
7 DR. LASHOF: You supplied us with a protocol
8 which I assume is the protocol that was submitted for
9 funding -- the proposal for a double-blind study.
10 DR. HYMAN: I supplied you with three
11 protocols. The first is a protocol I was asked to give in
12 1993, June 9, when I testified before the well-named
13 Committee on Oversight of the Subcommittee of the
14 Veterans' Committee of the House of Representatives.
15 Congressman Lane Evans of Illinois was chairing
16 the session. They asked me to submit a protocol. That
17 was a longitudinal study and a by-pass study. The by-pass
18 study was to take on those people whom I knew at the time.
19 For example, a guy by the name of Gene Trucks in
20 Birmingham who had successive MRIs, has lost pieces of his
21 brain. And his urine was strongly positive.
22 I take people like that in a by-pass study.
248
1 They are too sick to wait for a study. It is too late
2 with him. He is reduced to a ghoul at this point. And
3 then I do a longitudinal study. And then came these
4 appropriations. We met in Vienna, Virginia, May 9, 1994.
5 And we had the supply by June 1 to Fort Detrick, a
6 protocol for a double-blind.
7 DR. LASHOF: That is the one I have here.
8 We --
9 DR. HYMAN: Right. We had a representative
10 from Walter Reed, a Colonel Wise. We had a person who has
11 worked out approved methodology for quantitating the
12 fatigue and the loss of cognition and other things like
13 that. And we had a world-renowned statistician along with
14 my friend the professor from New York who I worked with at
15 Stanford many years ago.
16 And we all sat down. We worked this thing out.
17 We submitted it and they are still playing with it. They
18 sent it to a committee of the -- Fort Detrick where it
19 was, of course, canned because Bancroft was on the
20 committee. Then they sent it to the AIBS.
21 I don't know how dumb they think I am but this
22 is an organization of ornithologists, ichthyologists, and
249
1 herpetologists, acid-rain experts, oceanographers. Not a
2 single practicing physician among them but Fort Detrick
3 supplied them with a few M.D.s and there is my man again.
4 And then they sent it to three professors who
5 never heard of this and hadn't read the background of it.
6 And then finally, a year and a quarter later, they sent it
7 to Walter Reed where the doctor that General Blanck sent
8 was up there explaining it to them. And they all agreed
9 to it.
10 And then they got a letter from Colonel
11 Bancroft saying, No soap. And all the -- No soap.
12 I don't know how many more hoops they want me
13 to dance through. It doesn't matter to me. But as I
14 understand, there are a hell of a lot of veterans that are
15 suffering and I think that is wrong. And I think it is
16 criminal. And I can watch the thing evolve. I understand
17 that Dr. Joseph at the Pentagon has already spent millions
18 of -- something like $10 million to study 10,000 veterans
19 and watch the disease evolve. That is what reminds me of
20 Tuskeegee, Alabama.
21 I know what it is going to evolve to. I have
22 seen the whole thing in civilian life. I think it is
250
1 wrong. I think that something has got to be done. I hope
2 this committee has within it the push to push somebody to
3 do something. I think it is terribly wrong.
4 But yes, you are right. I do have that. That
5 protocol is in there. And a revision was made by the
6 consultant to the Walter Reed who is -- used to be the
7 dean of a Adelphi [phonetic] Medical School for its first
8 18 years and is still on their payroll as a consultant.
9 And he is the one who revised it to fit their kind of
10 protocol.
11 And he went up there because he thinks it ought
12 to go through. And he convinced virtually the entire
13 committee until they got this wonderful letter from Dr.
14 Bancroft and it was seven -- nine to nothing against it.
15 There is something queer going on and I think it smells.
16 DR. LANDRIGAN: We shall pass your word on.
17 Thank you.
18 DR. HYMAN: I hope I didn't leave any doubt as
19 to what I think.
20 DR. LANDRIGAN: All right. Our last
21 presentation this afternoon is Dr. Garth Nicolson from
22 University of Texas M.D. Anderson Cancer Center. Dr.
251
1 Nicolson is going to talk on mycoplasma infection and
2 antibiotic treatment of mycoplasma.
3 DR. NICOLSON: Thank you, Mr. Chairman.
4 Basically, I am going to continue on where Dr. Hyman left
5 off and talk about infections and their role in Gulf War
6 Illness. Just a little bit about my background for those
7 committee members who I haven't met.
8 I am the David Brutton, Jr. Chair in Cancer
9 Research at the M.D. Anderson Cancer Center in Houston,
10 Texas. I am a professor of internal medicine and a
11 professor of pathology and laboratory medicine at the
12 University of Texas Medical School in Houston.
13 I have published over 420 papers in a variety
14 of different journals, including many of the same journals
15 that Dr. Hyman has mentioned. I serve on 12 editorial
16 boards of scientific and medical journals. I am the
17 editor of two of these; Clinical and Experimental
18 Metastasis and The Journal of Cellular Biochemisty.
19 I am also a father of a Gulf War Illness
20 patient and my entire family has had Gulf War Illness. So
21 I think I am qualified to speak on this topic. We became
22 involved in this when our stepdaughter came back from
252
1 service as a crew chief on a Blackhawk helicopter in the
2 101st Airborne Division. And she and practically every
3 one of her colleagues came down sick within six months or
4 so after their return.
5 And so that is how I got involved in this whole
6 process. Let me see if this projector is working. So
7 today, I am going to briefly discuss why we have delayed
8 casualties during Operation Desert Storm. And of course,
9 we don't have all the answers and I don't pretend to. And
10 I don't think Dr. Hyman pretends to have all the answers
11 because we feel that the diseases that have resulted from
12 Operation Desert Storm are complex and due to a variety of
13 different causes.
14 I am going to be discussing the potential
15 biological exposures as a previous speaker did and I would
16 like to divide these up into different categories: acute
17 agents, bacterial pathogens, a variety of which caused
18 very acute symptoms; and chronic agents, which include
19 bacteria and mycoplasmas which can cause a variety of
20 chronic diseases which we think perhaps a large number of
21 the Desert Storm veterans are suffering from.
22 I am not going to cover anything about chemical
253
1 exposures but obviously if anyone has had chemical
2 exposures, they are going to be much more susceptible to a
3 variety of different infections.
4 We know from the CDC -- not from the DOD --
5 that service in Operation Desert Storm was hazardous to
6 your health. In fact, I think the CDC study, which was a
7 controlled study where they examined two units in
8 Pennsylvania and two units in Florida -- and these were
9 units that had approximately half the soldiers and airmen
10 deployed to the Persian Gulf and approximately half stayed
11 behind in their respective reserve and guard units -- that
12 there were illnesses associated with the Gulf War.
13 So this is not something that the DOD at that
14 time was willing to admit. And most of you on the panel
15 are well aware of this study. It was published in
16 Morbidity and Mortality Weekly Reports in which fatigue,
17 joint pain, diarrhea, and a number of other symptoms were
18 examined and found to be much higher in the deployed
19 units.
20 And I just made this into a bar graph just to
21 show you. Unit A and Unit B are from Pennsylvania. The
22 red bars indicate the deployed, in this case, airmen from
254
1 a Air National Guard and an Air Force Reserve unit. And
2 the yellow bars indicate the nondeployed airmen.
3 These are approximately equal units of equal
4 size and the deployed versus the nondeployeds are
5 approximately equal size. And as you can see by the red
6 bars, it doesn't take much of a mental genius to see that
7 if you were deployed to the Persian Gulf, you have a much
8 great incidence of a variety of these signs and symptoms
9 that we have heard about today, can be put in the
10 category, for example, chronic fatigue syndrome.
11 And here are the two Florida units. Same
12 thing. All the absolute numbers are the same. The units
13 that were deployed do have greater incidence of illnesses,
14 particular chronic illnesses. And so we feel that this is
15 a major problem so we set about to study this.
16 First, we developed a survey form and this was
17 supplied to the committee. I think I supplied enough
18 copies to the committee during the last meeting in Kansas
19 City. We wanted to find out about the individuals who
20 were sick, where they served in the Persian Gulf, the
21 locations.
22 We wanted to find out something about their
255
1 chronic symptoms and the severity of the symptoms. We
2 wanted to compare pre- and post-war symptoms. Indicate
3 whether they had any previous diagnoses. We wanted to
4 document symptoms when their blood is drawn because all
5 our tests are based upon blood samples.
6 We wanted to quantify, if possible, their
7 overall illness state. List chemical and environmental
8 exposures, when they happened. We wanted also to know
9 about their vaccinations although you know that this is a
10 very difficult area to get any solid information about
11 vaccinations. And indicate any drugs or treatments.
12 And we also wanted information on their family
13 members. Many of the patients that we have worked with,
14 their entire families have come down with Gulf War
15 Illness, very similar to my own. We published the study
16 in which Dr. Hyman was also an author, where we looked at
17 650 Desert Storm veterans. This just happened to be the
18 date of ours.
19 And again, it is very similar to the data you
20 have seen. A variety of these chronic signs and symptoms
21 like aching joints, chronic fatigue, memory less, sleep
22 difficulties, headaches, skin rashes, so on and so forth,
256
1 have very high frequencies in the soldiers and veterans
2 that have Gulf War Illness.
3 And finally, they go down the list to lower and
4 lower frequencies. So this is very much like the list
5 that you have seen before and I have provided this in a
6 publication which came out in the International Journal of
7 Occupational Medicine and Toxicology.
8 And in it, we discussed that there were
9 overlapping chronic signs and symptoms. These included
10 immediate family members. There were multiple apparent
11 causes and of course, that was really a hypothesis. We
12 did not attribute these to psychological disorders.
13 We felt that they were organic in nature and
14 that they were probably due to chemical and biological
15 agent exposures by endogenous and exogenous agents. And
16 as an exogenous agent, we also considered the possibility
17 that there may have been a chemical, biological warfare.
18 And of course, that is hotly denied by the
19 Department of Defense. We have heard today about the
20 chronic fatigue syndrome or CFIDS, chronic fatigue immune
21 dysfunction syndrome. And in fact, we published a paper
22 recently indicating that this is very similar to Gulf War
257
1 Illness. And you have heard this before.
2 This is a paper that was published in the
3 Journal of Occupational and Environmental Medicine and I
4 have provided a copy to the committee. But basically in
5 this paper, we conclude that the signs and symptoms of
6 CFIDS closely parallel those found in Gulf War Illness.
7 And that shouldn't be of any news to you now. It was when
8 we submitted the paper.
9 And here is just some of the data. If we
10 compare the literature values, particularly from David
11 Bell, for example, the Gulf War Illness -- they fit sign
12 by sign, symptom by symptom, almost exactly. And if we
13 look at the top 30 signs and symptoms, there were only a
14 few differences.
15 And the one difference here that we found in
16 visual is light sensitivity. We think that, in fact, our
17 values -- now we have gone back. We think they are
18 underreported. So essentially they fit very closely. And
19 in fact, General Blanck was mentioned here earlier and he
20 also came to this conclusion. Published in the CFIDS
21 Chronicle, although we heard he got into a little bit of
22 trouble because of this. He indicated that the symptoms
258
1 list fit his CFIDS-like illness.
2 So I think it is pretty clear that these
3 illnesses fit chronic fatigue immune dysfunction syndrome
4 or chronic fatigue syndrome. And I am not going to go
5 through this. You heard this earlier from one of the
6 other speakers.
7 There are some definitions. A working case
8 definition, for example, in 1988, Holmes et al., was kind
9 of the gold standard and there is a new one out in '94.
10 But basically, this is what I wanted to talk about. We
11 think that chronic fatigue syndrome or CFIDS can be caused
12 by infectious agents. And I think that is accepted but
13 what isn't accepted is, what are these chronic agents?
14 These -- certain chronic agents infect our cells, for
15 example, are present in our blood.
16 They can stimulate an immune response. This
17 immune response can result in the release of cytokines and
18 interferons and other substances which can cause many of
19 the symptoms that we see in chronic fatigue syndrome.
20 Now, if we look at the laboratory tests that
21 have been used for chronic fatigue syndrome -- and I won't
22 go through this but many of these tests come up normal.
259
1 And this has been very confusing, in fact, to try and get
2 a diagnosis for Gulf War Illness.
3 So I am not going to go through this. I will
4 just flash these up. If we look at CBCs, sedimentation
5 rate, blood chemistry, the thyroid screen -- although in
6 extreme cases we found thyroid disorders. Some patients
7 have been misdiagnosed with a Graves-like syndrome which
8 reverts upon antibiotic therapy.
9 In some cases, soldiers have come up positive
10 for an HIV test even though they did not have HIV. We
11 think we can explain that now and we have looked in a
12 little bit further into the types or organisms that are
13 present in these soldiers.
14 Antinuclear antibody. It is generally normal
15 but it can be abnormal. Lyme Disease -- sorry for the
16 misspelling here -- negative. Chest x-rays, generally
17 negative except in extreme cases.
18 And urinalysis for infection -- the normal
19 urinalysis for infection, of course, comes up normal but
20 Dr. Hyman, with his test, does find abnormalities and I
21 did want to mention that. This is for the classic test
22 and I think Dr. Hyman would accept that if you do the
260
1 classic methods, you can't detect anything.
2 Going to the next slide. Liver scan comes up
3 normal except in extreme cases and we have had a few
4 extreme cases where CT, for example, or liver scan comes
5 up abnormal. This is usually at the very terminal stage.
6 Lymph node biopsy comes up normal. That is, neoplastic
7 disorders or other disease states can't be identified.
8 CT scan of the brain comes up normal,
9 generally, for CFIDS but for Gulf War Illness, you can see
10 abnormalities. CD4, CD8 immune function is abnormal as
11 mentioned previously. Natural killer cell is abnormal.
12 So these are some of, now, the abnormal things.
13 A viral activation is abnormal. We don't think
14 that most of these viruses like the EBV have any role in
15 the etiology of it. We think that these generally come up
16 when somebody has a chronic infection. Blood antibody
17 levels can be abnormal and that might be a response to
18 illness.
19 Autoantibodies can be abnormal and many of the
20 patients have autoantibody. And also they have immune --
21 very unusual autoimmune type symptoms, at least in some of
22 the patients. Some of them have been misdiagnosed with
261
1 MS. You heard earlier this morning about ALS and so on.
2 The interferons and cytokines like IL2 and
3 interferons show abnormal. That is part of the syndrome.
4 And infections, bacteria and mycoplasma -- we think that
5 can show up. In fact, in a subset of CFIDS patients, we
6 found the same type -- not the same type but mycoplasmal
7 infections.
8 So we have been talking about -- Dr. Hyman,
9 about bacteria. I have been talking about mycoplasma.
10 They are basically the same type of organism. A
11 mycoplasma can be thought of as a bacteria without a cell
12 wall. These are very small organisms.
13 The type that we are dealing with are
14 penetrating mycoplasma described by Dr. Lowe at the Armed
15 Forces Institute of Pathology and others. These type of
16 mycoplasma enter cells. And we think this is very
17 important, in fact, in the disease process because when
18 they come back out of cells, they can take a piece of the
19 membrane with it and we think that this may trigger some
20 of the autoimmune effects which revert upon successful
21 antibiotic therapy.
22 Now, mycoplasmas are known to cause a variety
262
1 of different illnesses. Although I put a letter in there
2 from Stephen Joseph indicating that mycoplasmas are not
3 known to cause these types of illnesses, I think that is
4 basically incorrect. And to back that up, somebody sent
5 me the syllabus from the USUHS. USUHS is the Uniformed
6 Services University for the Health Sciences. It is where
7 the medical physicians are trained that serve in the armed
8 forces.
9 And in Pathology Syllabus 6, this disease
10 process was described very adequately by Eileen Marty, who
11 is Chief of Infectious Diseases at the Armed Forces
12 Institute of Pathology. Basically, mycoplasmas do cause
13 illnesses. In fact, we found this out later in looking at
14 that syllabus, the same types of antibiotics that it took
15 us some time to find out, they knew about all along. So
16 that was kind of interesting.
17 I am not going to go through this but
18 essentially the types of signs and symptoms associated
19 with mycoplasma are the very same types of signs and
20 symptoms that can occur in a severe mycoplasma or Gulf War
21 Illness situation. I am going to just skip this to get
22 on. There is a mycoplasma inside cells, what they look
263
1 like by electromicroscopy.
2 Now, how are these detected in patients? Well,
3 we started -- that is, Nancy Nicolson and I, my wife --
4 using a technique she developed called gene tracking. And
5 I am just going to go into that very briefly. It is a
6 very powerful method. It is based upon DNA probe
7 technology, DNA hybridization. It is extremely specific
8 and sensitive.
9 We have also used another technique that is
10 very sensitive, polymerase chain reaction. And we found
11 that the classical polymerase chain reaction was really
12 insufficient in examining this so we, in fact, elaborated
13 on a forensic PCR technique to detect mycoplasmal
14 infections.
15 We couldn't find any mycoplasmal infections in
16 the straight blood. We couldn't even find it in the
17 straight plasma of Gulf War Illness patients. We had to
18 go to the leukocyte fraction of the blood, basically
19 because these mycoplasma were penetrating -- intracellular
20 mycoplasma that we detected.
21 So we could find it in the leukocytes. We
22 could find it in the nuclear fraction of the leukocytes,
264
1 not in the cytoplasmic fraction. So these penetrating
2 mycoplasma get into the cell. Either they associate with
3 the nucleus or we purify them with the nuclear fraction.
4 Gene tracking is a technique I mentioned that
5 can be used to identify specific genes bound to nuclear
6 proteins purified from subchromatin complexes so we don't
7 have to, in fact, purify the entire DNA to localize a
8 specific gene. And we have used this technique in cancer
9 research over the last few years to study the progression
10 of cancer and the change in a variety of different genes
11 associated, for example, with malignancy and progression.
12 Now, I have four active grants myself, two from
13 the National Cancer Institute, one from the American
14 Cancer Society to study these sorts of things. The gene
15 tracking technique as we use it clinically -- clinically,
16 diagnostically, is we take the nuclear fraction, for
17 example, from the leukocytes of patients like Gulf War
18 Illness patients.
19 We separate out the chromatin complexes, the
20 nuclear protein complexes on low ionic strength gel.
21 Electrophoresis. We transfer those to Immobilon and then
22 we probe them with very specific gene probes. And then by
265
1 autoradiography, we can determine a positive reaction.
2 This is a Gulf War Illness patient who came up
3 positive for mycoplasma fermentans incognitus strain. And
4 here is a positive probe result. Here is the control on
5 that. These are various subfractions -- nuclear
6 subfractions. This indicates that this particular
7 mycoplasma was in a complex of nuclear proteins that we
8 consider fairly peripheral, not deep in the nuclear
9 material.
10 Polymerase chain reaction is a technique where
11 you can take a segment of DNA, usually a small segment,
12 and using two sets of primers that are very specific and
13 they are all of the nucleotide sequence you can, in fact,
14 make a complete replica of that DNA and then use a
15 technique to release the DNA that you have replicated and
16 then repeat that process and by a number of cycles, you
17 can amplify up to a million or ten million fold that
18 particular DNA sequence.
19 What we found in the case of the Gulf War
20 Illness patients is that something is blocking this in the
21 classical form of PCR. We hypothesize that there may be
22 nuclear proteins blocking it and unless the DNA is treated
266
1 properly, you won't be able to amplify the DNA, so you
2 don't get a PCR product.
3 This is what we found. In fact, in some of our
4 preliminary studies with Gulf War Illness patients, first
5 the control -- this happens to be a control for any type
6 of mycoplasma. It is a general gene that produces a
7 product with the two specific primers at 607 base pair
8 size.
9 These are positive patients shown here. This
10 little bright line here, this indicates that equivalent
11 size product was made in some of the patients, indicating
12 that they are probably positive for mycoplasma infections
13 although we couldn't identify the species with this
14 particular test.
15 Now, this was one of the things that I proposed
16 to do in a grant to the DOD, was to optimize this
17 particular process. That is very important if you have a
18 clinical type of diagnostic test, that it be optimized,
19 that it be available to be used by anybody, essentially.
20 To do that, you have to really optimize it.
21 So we were going to optimize it for the
22 specificity of the primers for a variety of different
267
1 conditions which are necessary. I am not going to go
2 through these. These are pretty standard. We were also
3 going to confirm the PCR product by sequence analysis,
4 southern hybridization, and so on. These are all very
5 standard techniques and I am not going to just show you
6 the primers.
7 Now, what we have found in our small selection
8 of Gulf War Illness patients. We found that about half of
9 them have a mycoplasmal infection in their blood. And
10 that is the important thing. This is not a superficial
11 mycoplasma infection, as one of the reviewers thought on
12 my grant application.
13 This is not from an oral cavity or something
14 like this. This is actually from the leukocyte fraction
15 of the blood, inside the leukocytes of the blood. In this
16 set of patients, about half of the patients tested
17 positive for any type of mycoplasma. The overwhelming
18 majority of those was this very unusual mycoplasma,
19 Mycoplasma fermentans incognitus. This was first
20 described by Dr. Lowe, the Armed Forces Institute of
21 Pathology.
22 Now, nobody really knows the exact origin of
268
1 this mycoplasma. I have heard that this mycoplasma arose
2 as a contaminant in an anthrax culture at Fort Detrick but
3 that is just -- I have no evidence for that. In less than
4 10 percent, we found mycoplasma genitalium. And in fact,
5 this number actually may get lower than that.
6 Now, a number of other common mycoplasmas we
7 could not identify and these are often the types of
8 mycoplasmas like Mycoplasma pneumoniae that you would
9 find, for example, in a respiratory infection. We did not
10 find that in the blood.
11 Now, there are a variety of different
12 treatments for a viral, bacterial, and mycoplasmal
13 infections. For the most part, for bacteria and
14 mycoplasmas, you use antibiotics. Unfortunately, the
15 specificity of these antibiotics is not very great so you
16 try to find antibiotics that work.
17 And in fact, for our findings, we found four
18 antibiotics that we could suggest to primary care
19 physicians. When we found recently about half, I
20 mentioned, Gulf War Illness patients and symptomatic
21 family members have in their white blood cells mycoplasmal
22 infections -- and we have examined greater than 200 now.
269
1 The treatment recommendations are several six-
2 week cycles of the following antibiotics: doxycycline at
3 200 mg per day, ciprofloxacin 1,000 to 1,500 mg per day,
4 azithromycin 500 mg per day, minocycline 300 mg per day.
5 So those are the recommendations that we give sometimes.
6 These have to be used sequentially. Different
7 antibiotics, particularly if there is any resistance that
8 develops -- this type of disorder is not easily treated.
9 The reason why we have to use several cycles is given here
10 in this following graph, that after one cycle essentially
11 100 percent of the patients relapsed at various times
12 after removal from antibiotics.
13 After two cycles, only 84 percent relapsed.
14 Three cycles, and finally you get down to as many as six
15 cycles and now the patients are simply -- they don't
16 relapse any longer or if they do relapse, they are so mild
17 that maybe they don't even notice it.
18 The important thing was that with each cycle of
19 therapy, the relapses became milder and milder in terms of
20 the clinical severity. And I think that is important. It
21 shows that we are making some progress. But as Dr. Hyman
22 mentioned, patients are probably not cured of this
270
1 disorder. We can simply reduce the
2 level, probably, of the mycoplasma to the point where they
3 are no longer a clinical problem but they are probably
4 still there. You have got to think of this almost like
5 tuberculosis. You can solve the clinical problem but the
6 disease is still there. And if the patients are, let's
7 say immunosuppressed or severely compromised, that we
8 think that this could pop back up again and, in fact, in a
9 number of our patients, this has happened.
10 We published a note in JAMA, Journal of the
11 American Medical Association, about a year or so ago. In
12 fact, we were roundly accused by the DOD of doing this
13 completely in error. We had 73 Desert Storm veterans with
14 CFIDS and immediate family members with similar symptoms.
15 And we recommended to their primary care physicians that
16 they go on doxycycline.
17 Of the 73, 55 responded and eventually
18 recovered. In fact, we now have a study and you wanted
19 information on this. This is now a published study in a
20 peer review journal. In fact, there were four reviewers
21 on this paper because I mentioned to the editor that this
22 might be a controversial paper so he immediately assigned
271
1 four reviewers. I should have kept my mouth shut but it
2 worked out.
3 This was a pilot study on 30 Gulf War Illness
4 and 21 control healthy patients. Again, as we found
5 before in the Gulf War Illness patients, 14 out of the 30
6 came up mycoplasma positive in their blood. Zero out of
7 21 of the controls came up positive.
8 Eleven out of 14 of the mycoplasma positive
9 patients recovered after multiple cycles of antibiotics,
10 up to six cycles. Three out of the 14 are still
11 undergoing therapy and are still relapsing. Follow-up
12 studies indicated that the recovered patients are now
13 mycoplasma negative.
14 I left a copy of this paper with you this
15 morning so you can take a look at it. This was published
16 in the International Journal of -- or, will be out soon.
17 I gave you the galley copies. But I have the page numbers
18 in the International Journal of Occupational Medicine,
19 Immunology and Toxicology, Volume V, Pages 69 to 78.
20 Now I would like to go through just a few
21 subjects. I have a little bit of time left and then I
22 want to give a conclusion as to what I think might be the
272
1 possible origin of these types of illnesses.
2 Subject A was an Air Force major in military
3 intelligence attached to the 5th Special Forces. He was
4 deployed at King Kahlad Military City. He was present
5 during the SCUD attacks. After six months when he came
6 back to the U.S., he presented with a variety of the
7 symptoms we have heard about.
8 He went on doxycycline 200 mg per day to begin
9 with and 100 mg per day, six-week cycles. He tested
10 positive for Mycoplasma fermentans, using gene tracking.
11 He recovered after three cycles of doxycycline.
12 Occasionally he relapses, especially if he flies or
13 extreme physical activity.
14 Subject B was a lieutenant commander in the
15 Navy. This is one of our best subjects. He was in the
16 SEAL units in the 5th Special Forces. He was deployed on
17 the Joint Special Operations deep in Iraq. Within nine
18 months after he returned, he -- again -- presented with
19 all of the same problems that we have heard about.
20 His illness was much worse after flying,
21 diving, or extreme activity which, of course, being in
22 Special Forces and a Navy SEAL, that is exactly what they
273
1 are going to do. He went on doxycycline therapy. He had
2 tested positive for M. fermentans by gene tracking. After
3 several cycles, he completely recovered.
4 Subject C was a Marine Corps colonel. He was
5 attached to the Central Command staff. He was deployed in
6 Saudi Arabia at Central Command headquarters. Within nine
7 months after his return, again he presented with the same
8 types of symptoms that you have heard about.
9 Within 24 months, his wife became ill with the
10 same symptoms. They both tested positive for a mycoplasma
11 species by PCR. They went on doxycycline treatment.
12 After two cycles of doxycycline, the colonel recovered.
13 His wife still is relapsing and she is almost recovered
14 now.
15 Subject D was a captain in the Army in the
16 101st Airborne. He was deployed in Iraq near Base Eagle.
17 Within 16 months after his return, he presented again with
18 the same types of symptoms. His wife became sick with
19 similar symptoms. Their seven-year-old child became sick
20 with similar symptoms. Failed to gain weight.
21 The adults were put on doxycycline 200 mg per
22 day, then 100 mg per day. The child was put on 50 mg per
274
1 day. The child, being seven years old, was just above the
2 limit where you might want to apply doxycycline. After
3 several cycles -- as a matter of fact, that should be six
4 cycles of doxycycline, the husband is recovered. The wife
5 is almost recovered. The child completely recovered after
6 only a few cycles. Now she is gaining weight normally and
7 doing very well in school where she was having problems
8 before.
9 Subject E is an Army specialist in a Graves
10 registry unit in the 24th ID. Was deployed in Iraq and
11 Kuwait. Within 12 months after her return, she became a
12 very sick -- matter of fact, she is so sick that she is
13 partially paralyzed, in a wheelchair, requires oxygen.
14 She had trouble with doxycycline. She went on
15 ciprofloxacin 500 mg. I checked -- it should be 1,000 mg
16 per day. She tested positive for Mycoplasma fermentans by
17 both PCR and gene tracking. After -- now that should be
18 about four cycles of ciprofloxacin. She is improving.
19 She has not fully recovered yet but she has made
20 improvement.
21 Subject F is an Army colonel, retired, Special
22 Forces. He was a member of the Press Corps. He was at
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1 various locations in Saudi Arabia and Kuwait. He examined
2 SCUD impact sites. In fact, he is in this room as part of
3 the Press Corps.
4 Within nine months after his return, he present
5 with, again, the variety of the chronic fatigue symptoms.
6 His fiance, who is also here, presented with similar
7 symptoms and both of these were treated with doxycycline
8 200 mg per day. They tested positive with Mycoplasma
9 fermentans by PCR.
10 After a few cycles of doxycycline, they are
11 essentially -- he has essentially recovered but they still
12 relapse occasionally. It is hard to keep a Special Forces
13 man from exercising. Isn't that right, Mike? And he
14 overdoes it. Sometimes relapses.
15 Subject G is a -- was a staff sergeant in
16 military intelligence in the 101st Airborne. He served at
17 various locations in Saudi Arabia and Kahlad. He was near
18 SCUD impact sites. Within six months after he returned,
19 he presented with a variety of the different problems that
20 we have heard about.
21 The spouse also started presenting with the
22 same symptoms. They went on doxycycline. They were
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1 positive. This is the only one in this group that was
2 positive for Mycoplasma genitalium by gene tracking.
3 After one cycle of doxycycline, he stopped it because of
4 his multiple chemical sensitivity. He then went on some
5 other antibiotics. He is still not recovered but we saw
6 him recently and essentially he is now recovered.
7 Subject H was a staff sergeant, 101st Airborne
8 Division. Again, served in Iraq. Was subject to SCUD
9 attack. Within six months after he returned, again he
10 presented with the same types of symptoms we have heard
11 about. He was partially paralyzed in a wheelchair when he
12 contacted us.
13 Actually, his wife had the same symptoms. They
14 both went on doxycycline 200 mg per day, then 100 mg per
15 day. They tested positive for mycoplasma species. After
16 one cycle of doxycycline, he lost his paralysis and he
17 could walk again. They are both recovering now.
18 Subject I was a 30-year-old lieutenant in an
19 NBC unit in 101st Airborne. She served in various
20 locations in Iraq and inspected various NBC -- or, was
21 involved in suspected NBC attacks. Within six months
22 after her return, she presented again with a variety of
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1 the different problems.
2 She had -- particularly, she had menstrual
3 cycle problems like a lot of the females do, multiple
4 chemical sensitivity, memory loss, vomiting, all the
5 things. Required constant sleep. She had to leave the
6 Army. She went on doxycycline 100 mg per day. We had to
7 up that eventually to 200 and we had to switch her,
8 actually, to another antibiotic.
9 She tested positive. We were able to pin that
10 down. It is not a mycoplasma species now. It is
11 Mycoplasma fermentans incognitus. After two cycles of
12 doxycycline, she recovered enough to go back to work. She
13 has had a few more cycles and she is doing fine.
14 This is a very interesting subject. Subject J
15 was a master sergeant in the Air Force. Was a cargo
16 specialist at Dover Air Force Base. Never went to the
17 Gulf although he did receive immunizations. He unloaded
18 Iraqi equipment and SCUD parts at Dover Air Force Base.
19 Within six months after that, he came down with
20 chronic fatigue, skin rashes, aching joints -- the same
21 types of things that we have heard. His wife and three
22 children are now showing the same symptoms. They all
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1 tested positive for mycoplasma species by PCR.
2 The entire family was put on 200 mg per day
3 doxycycline. After two cycles of doxycycline, the whole
4 family is recovering. We have now heard from them. They
5 have relapsed again. They are going to have to go back on
6 another antibiotic.
7 How did this happen? Well, we suspect that
8 there were several possible sources for these infections.
9 First are the vaccines. And we have heard a lot about
10 vaccines. They spent probably half a day during the last
11 meeting on vaccines.
12 Now, it turns out mycoplasma contaminations is
13 not unusual in vaccines and so that could be the possible
14 source. For example, in commercial vaccines it is not
15 uncommon where you will find a lot that has mycoplasma
16 contamination. We know in tissue culture it is very
17 common to get a mycoplasma contamination. So that is the
18 first possibility. And of course, there may have been
19 purposeful seeding of mycoplasma in vaccines.
20 The second possibility. Backblow or plumes
21 from bombing of chemical biological warfare factories and
22 bunkers deep in Iraq. The Special Forces units that had
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1 to go deep in Iraq may have been exposed this way.
2 Three, the purposeful seeding of exclusionary
3 regions in Iraq. Some of the military intelligence people
4 that we talked to that were quite sick after going into
5 Iraq indicated that there were certain regions that had
6 signs in Arabic, "Do Not Enter," and so on. There were
7 nothing but dead animals in those regions.
8 Those areas may have been purposely seeded. In
9 fact, they had proposed that they were going to do that.
10 At least, a U.N. inspection team indicated that.
11 And number four, which is very important, SCUD-
12 B attacks. We have heard about -- that a lot of the
13 people that became sick after SCUD attacks. We have heard
14 this description over and over. These were SCUD attacks
15 where they weren't ground burst, high explosive types.
16 They were low explosive, low yield, high altitude bursts
17 where a fine mist would come down -- a water vapor or a
18 mist would come down. That is very consistent with a CBW
19 type of warhead. The U.S. inspection team indicated that
20 they did have the offensive capability of delivering these
21 types of warheads on SCUDs.
22 So the delayed casualties to Desert Storm could
280
1 be due to a number of possible exposures by chemical and
2 biological agents. And I have only covered the
3 biological. Obviously, the chemical exposures are very
4 important as well and these have been mentioned. I am not
5 going to comment on that but let's go to the biological
6 exposures.
7 There were a variety of possibilities, both
8 acute agents and chronic agents, and most of these agents
9 fall under the category of CBW. I realize that but some
10 of them may not be. In the area of acute agents, we have
11 all heard about anthrax and botulism. And there was also
12 clostridium and other types of bacteria.
13 We knew that the Iraqis had this capability.
14 This was mentioned by the U.N. inspection team. They not
15 only had the capability but the U.N. inspection team had
16 indicated that they had the capability. They had also
17 grown up large quantities of bacterial biological
18 weaponry.
19 We don't know what happened to that. We don't
20 know if they are stored or if they actually used it.
21 There were orders put out to the generals in the field --
22 you heard that -- at battalion level, to use CBW. And we
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1 have heard that particularly if units penetrated into
2 Iraq, they had standing orders to use it.
3 We have been interested in chronic agents. Of
4 chronic agents, I put in that category mycoplasma,
5 brucella, tularemia, and other possibilities because these
6 are agents that would not show up immediately. These are
7 agents that would show up some time after the conflict.
8 And that is consistent with the six-month or so period of
9 time which it took for symptoms to show up.
10 We are going to examine some of these
11 possibilities. The next one we are going to examine in
12 brucella. We found that so far in the patients that we
13 have examined, about half of them have evidence of
14 mycoplasmal infections in their blood and they revert to
15 mycoplasma negative after successful antibiotic treatment.
16 The types of antibiotics that we are using
17 could also knock down brucella, for example, and tularemia
18 as well so we need to go back and look at that. Since the
19 Iraqis were operating under Soviet war doctrine, that war
20 doctrine indicates that you mix conventional and
21 unconventional weaponry.
22 If you look at chemical and biological warfare,
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1 that doctrine suggests that you mix together different
2 chemicals, mix together different biologicals and use them
3 as a cocktail. If, in fact, that happened, that would
4 explain some of the problems we have in identifying some
5 of these agents positively in suggesting the appropriate
6 therapies. Well, we are going to follow through on some
7 of these now and we are going to develop the tests
8 necessary to do this.
9 Now, I have heard -- in fact, I was under
10 criticism from people in the Pentagon. They indicated the
11 Iraqis didn't have the capability to weaponize mycoplasma
12 or to use it as an offensive weapon. And I disagree with
13 that. There was a very talented individual, Jawad Al-
14 Aubaidi, who was head of the mycoplasma unit. In fact, he
15 was a world-renowned mycoplasma expert.
16 He was trained at Plum Island in the United
17 States, which was our USDA isolation facility. He was
18 president of Al-Quadsia University and he was also the
19 founder of the University of Baghdad mycoplasma unit
20 approximately 20 years ago, so this is a unit that has
21 been very active in Baghdad for some time.
22 They also had a very large number of personnel
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1 for this unit, which is pretty surprising for a country
2 like Iraq unless they were going to use this for some
3 other use, such as chemical biological warfare.
4 My conclusions. We have identified invasive
5 mycoplasmas in approximately one-half of a nonscientific
6 selection of veterans of Desert Storm that have Gulf War
7 Illness using gene tracking and forensic PCR. Now,
8 although there has been a lot of argument that we are not
9 using scientific methods, basically we depend upon sick
10 soldiers and their -- sick veterans and their family
11 members to come to us.
12 We don't advertise. We don't charge anything
13 for a diagnosis. Like Dr. Hyman mentioned, this is all
14 done at no cost. It takes a tremendous amount of time and
15 effort to do this.
16 We feel that those soldiers that were on the
17 deep insertions into Iraq or under SCUD-B attacks seem to
18 have the most health problems. This is a theme that has
19 been repeated over and over again. You have heard this
20 over and over. SCUD attack. What you may not have heard
21 is that the Special Forces and other units that went deep
22 into Iraq had major problems. And we worked very closely,
284
1 for example, with the Special Forces units, with the Delta
2 Force and so on, with their problems.
3 Most soldiers that display signs and symptoms
4 of Gulf War Illness within months after returning to the
5 U.S. -- and generally you have heard this is six months to
6 a year. And the symptoms are chronic and some symptoms
7 actually abate with time. Naturally, that is what you
8 might expect with a chronic infection.
9 However, when immediate family members present
10 with almost exactly the same symptoms, this suggests that
11 there is an active infection that is involved. And it
12 suggests that at least some forms of Gulf War Illness are
13 contagious and are being transmitted and this is probably
14 by an airborne method.
15 Now, the mycoplasmas are not what I would call
16 wildly contagious. They are only mildly contagious. And
17 so again, that is consistent with the slow onset of signs
18 and symptoms that you see in immediate family members.
19 Now, the immediate family members display similar symptoms
20 to the Gulf War Illness patients. And we have tested both
21 family members and the individual veteran or patient by
22 examining their leukocytes for the presence of mycoplasmal
285
1 infections. They are also treated with the same
2 antibiotic regimen and they also recover similar to Gulf
3 War Illness veterans. So we think that they have the same
4 disease process and they got it through their close
5 interactions.
6 The antibiotics that we use to treat these
7 mycoplasmal infections -- doxycycline, ciprofloxacin,
8 zithromycin, and minocycline may not be the most effective
9 antibiotics for the types of infections we have found but
10 basically with mycoplasmas, you are quite limited in the
11 type of antibiotics you can use. And that may be one of
12 the problems in treating it. I realize that these are
13 also broad-spectrum antibiotics and these also may knock
14 down other types of infections as well.
15 The diagnostic tests for mycoplasmal infections
16 must be improved and streamlined for diagnostic laboratory
17 use. Basically, we are in a research setting and we use
18 very labor-intensive techniques that would never be useful
19 in a diagnostic laboratory setting. We had hoped to
20 improve these but the Army did not fund our grant.
21 A case-controlled study should be performed to
22 confirm the possible role of these mycoplasmal infections
286
1 in Gulf War Illness and we had proposed to do a study with
2 the CDC on this. The DOD chose not to fund that study,
3 which was a case-controlled study. The CDC now still
4 wants to proceed. So we are finding -- we are going to
5 find another source for money to do this.
6 Basically, that is my story. And if those of
7 you on the committee by now haven't got the sense that
8 there might be some kind of a cover-up going on about this
9 whole operation, I have left a couple of documents with
10 you that I am not going to discuss.
11 One is a letter from Stephen Josephs where he
12 denied that mycoplasmas are a health problem. And of
13 course, I mentioned to you that that is completely
14 contradicted by instructors in the USUHS, the military
15 physicians; by Eileen Marty, who is Director of Infectious
16 Disease at the AFIP; and also that, in fact, we haven't
17 really found anything and we have had no follow-up.
18 I would suggest to you that we have done
19 follow-up on at least a small cohort of patients.
20 Obviously, these are not large numbers because we don't
21 have the money to do large numbers. We were criticized
22 for not running a case-controlled study but those of you
287
1 that are in clinical research know that that takes quite a
2 bit of money and manpower to do.
3 We have done what we could on a very small
4 personnel budget. This came mainly from my chair, the
5 David Burton Chair, I would like to acknowledge for that
6 funding, and donors who donated money out of their pockets
7 to help us out with this program.
8 So we are doing what we can do. And I think a
9 lot of the criticism that has been leveled at people like
10 Dr. Hyman and myself are very ill-founded. We are working
11 essentially without any support, without any help from the
12 VA or the DOD. As a matter of fact, the VA has tried to
13 shut us down more than once through my own institution.
14 We have had an unbelievably difficult situation
15 to work under, very unusual for me. I was not used to all
16 of this shenanigans behind the scenes. So I hope that
17 this information has been useful and thank you for
18 inviting me back to present to the full committee.
19 DR. LANDRIGAN: Thank you very much. I know
20 you said at the beginning of your presentation that you
21 have enjoyed funding from the National Institutes of
22 Health. In fact --
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1 DR. NICOLSON: Correct.
2 DR. LANDRIGAN: -- you have several NIH grants
3 running at the present time. And so I would like to ask
4 you, have you sought funding from NIH -- I guess it would
5 be from the NIAID, specifically, to support some of this
6 work?
7 DR. NICOLSON: We are going to look into that,
8 actually. Because, in fact, we are doing a study -- a
9 small study with the Cheney Clinic in North Carolina and
10 also with a group in Redding, California to examine CFIDS
11 patients. We did a very tiny -- it is not even a -- I
12 wouldn't even call it an organized study. We just simply
13 got a few CFIDS patients together and blindedly tested
14 them for mycoplasmal infections. And we found a subset of
15 them had mycoplasmal infections.
16 Their primary care physicians were informed of
17 the results. They went on the same types of antibiotics
18 that we suggest for Gulf War Illness. They have recovered
19 now. Some of these patients were sick for 10 or 15 years.
20 Now, I am not suggesting that all CFIDS
21 patients have these chronic infections but I suggest to
22 you that there is probably a subset of CFIDS patients that
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1 have these chronic infections that can be helped immensely
2 by these types of diagnostic tests and advice to their
3 primary care physicians.
4 DR. LANDRIGAN: Yes. I mean, I don't think any
5 of us thinks that the NIH peer review system for awarding
6 grants is perfect but it is like what Winston Churchill
7 said about democracy. It may be imperfect but it is a
8 awful lot better than the alternative.
9 DR. NICOLSON: I am well familiar there. I was
10 a holder of an Outstanding Investigator award from the
11 National Cancer Institute. Those of you that know that
12 know that it is a very rare award, indeed, to get. I have
13 had approximately 30 years of continuous support from the
14 NIH and so I believe in the NIH.
15 I believe in their review system. I have been
16 chairman of some of their review committees. I believe in
17 that process. However, I do also have a U.S. Army grant.
18 I have also been a chairman of a U.S. Army review
19 committee so I know a little bit about their review
20 process.
21 But I do not believe that the review process
22 that they used for these Gulf War Illness grants are
290
1 similar to what they did in the past, for example, for the
2 breast cancer program, which I am familiar with. That is,
3 nowhere have I heard where you have representative from
4 DOD, from VA, and from different sources to constitute a
5 review panel.
6 Normally, they go out and get a panel of
7 outside experts to make recommendations. And so it is a
8 very unusual process that they have used. You have heard
9 from Dr. Hyman. He has had a very difficult time getting
10 any funding at all. A lot of broken promises.
11 I am not going to even try and get DOD support
12 because when I put my last grant application in, I
13 mention -- I talked to a friend of mine at DOD. He said
14 that I was wasting my time, that that grant was DOA. It
15 was dead on arrival. They had no intention of funding it.
16 And in fact, when I got it back, not only did
17 they not give me a priority score for funding but they cut
18 the budget by 88 percent which meant that there was no
19 possible way that I could achieve any of the specific aims
20 of the grant on 12 percent of the budget that I put in.
21 It was just a joke, frankly.
22 DR. LASHOF: Can you tell me how you came to
291
1 look at mycoplasma specifically? Had you looked for other
2 organisms first? This was not an area you had worked in
3 in the past.
4 DR. NICOLSON: No. As a matter of fact, I was
5 criticized because I am not a mycoplasma expert although
6 one of the co-investigators on the grant, Dr. Joel
7 Baseman, is a mycoplasma expert and we sought him out for
8 advice on this. And also one of the co-investigators of
9 my grant, Dr. Herbert DuPoint, is also an expert in
10 infectious disease and chairman of -- was chairman of
11 medicine at Baylor College of Medicine and head of the
12 infectious disease unit at Baylor College of Medicine. So
13 I did have a number of experts that I was collaborating
14 with.
15 Basically, we went through the medical
16 literature and tried to find out, were there any similar
17 diseases that had ever been reported in the medical
18 literature and what were the signs and symptoms and so on
19 and so forth. We started from that standpoint and then
20 started to test a number of possibilities in the
21 laboratory and hit upon mycoplasma.
22 DR. LASHOF: What other organisms did you look
292
1 for?
2 DR. NICOLSON: Well, I am not going to go into
3 detail. We were looking at some of the common bacteria
4 and so on. And again, we are going to start now looking
5 at brucella, some of the other possible chronic illness-
6 causing types of bacteria.
7 Most people who look for bacteria look for
8 acute causing -- bacteria that cause acute illnesses and
9 these are not like that. You know, the whole type of the
10 illness, the whole clinical manifestations are not like an
11 acute bacterial infection at all.
12 So we were trying to look for penetrating
13 microorganisms, bacteria -- but penetrating inside cells
14 because, from my background, that would be most consistent
15 with an autoimmune dysfunction or disorder and also
16 causing some of these, what we call false autoimmune
17 symptoms that we see in many of the Gulf War Illness
18 patients.
19 Essentially, these false symptoms -- I call
20 them resolved upon antibiotic treatment but there is no
21 way that things like ALS, as you heard about this morning,
22 MS or something like that, will resolve upon antibody
293
1 treatment. No way.
2 DR. LASHOF: How many of the spouses or family
3 members of the veterans that you have treated did you also
4 test and what percentage of those were positive? Do you
5 have data on that?
6 DR. NICOLSON: Well, I can't give you an exact
7 figure on that off the top of my head. Every week when we
8 contact -- when a patient comes to us, one of the first
9 things we do is to have them fill out a form. They have
10 to also fill out a blood disclosure form and this illness
11 survey form which, by the way, is 18 pages. And I gave a
12 copy.
13 It is very extensive. And I went over with an
14 epidemiologist, the format of that form before we ever
15 used it. And so it actually went through several hands
16 before it was actually -- before we decided on using it.
17 And we were very interested to know at that time was there
18 any indication that spouses or other family members had
19 similar symptoms.
20 And usually we would get the information at
21 that time because we -- quite frankly, we asked them.
22 That is one of the first things we asked. Is anyone else
294
1 in your family exhibiting the same or similar symptoms?
2 And if they are, we make sure to give them
3 enough forms so that every family member will fill it out.
4 On the basis of that form then, we can recommend that they
5 send in blood samples. Now, we haven't routinely been
6 taking everybody in the family but now we have, I think,
7 enough justification for doing that.
8 Basically, in the past we have only taken the
9 blood from symptomatic family members so it is not really
10 a controlled or carefully done study. As a matter of
11 fact, none of this, I would call, is a carefully done or
12 controlled study.
13 A lot of it is taking small groups, which is
14 all we can really do with the amount of funds we have
15 available and examining them and doing some follow-up on
16 it. This is all we can do right now.
17 MR. RIOS: Let me ask you. You stated that you
18 thought there was a -- that in your view, there is a
19 cover-up going on and we have heard that from different
20 sources. In your view, in your personal observation, what
21 is the driving force for this cover-up?
22 Is it different -- just a different medical
295
1 philosophy on how to approach this problem or is this
2 generals that are hiding something or -- in your view,
3 what is it?
4 DR. NICOLSON: I think it is generals that are
5 hiding something. I think you may have --
6 MR. RIOS: And they have basically gotten
7 together with the doctors and said, Look, we have --
8 DR. NICOLSON: Look, I can only speculate on
9 this. Anything I say is rank speculation. But we do have
10 some scientific evidence that similar microorganisms were
11 being tested in a vaccine program in the Texas Department
12 of Corrections before the Gulf War.
13 And you -- Sally Medley spoke here this
14 morning. We found a similar infection in some of her
15 people and her family. We also found a very unusual gene
16 present in the mycoplasma, the HIV-1 envelope gene but not
17 the entire HIV gene which may explain, as I mentioned
18 during my talk, why some of the veterans come up HIV-
19 positive. But when they are re-tested, they are not --
20 they don't have HIV.
21 It is on an antibody-based test. And we think
22 that the reason that some may come up positive if they do
296
1 have this mycoplasma with the HIV-1 envelope gene, if it
2 is expressed and the mycoplasma expresses that envelope
3 gene, then they could theoretically come up positive on an
4 AIDS test.
5 And I think -- and I -- this is speculation but
6 I think quite strongly that the HIV-1 envelope gene may
7 have been put in the mycoplasma to weaponize it. This is
8 a perfect way to weaponize a microorganism and turn it
9 into a systemic disease. Why? Most mycoplasmal
10 infections are usually limited to the organ in which they
11 initially infect, for example, either urinary infection or
12 respiratory infection.
13 If, however, you have in it a receptor for the
14 CD-4 receptor on a -- carried by a variety of different
15 cells, you might be able to make that potential biologic
16 weapon systemic. And so that may have been what happened,
17 is this may have been part of the weaponization process.
18 And there may be other genes present that we don't know
19 anything about.
20 In fact, my wife stumbled across the HIV thing.
21 It was a control that we were running. You know, we were
22 running controls for various viruses and infections and
297
1 everything and that cropped up. We started to investigate
2 it further. Started going gene by gene down the HIV
3 because we -- she happens to work on that.
4 And so we had the probes for it and found out
5 that it wasn't the polymerase gene. It wasn't the REV
6 gene. It wasn't the TAD gene. It wasn't the LTR. It was
7 the envelope gene and only the envelope gene. That is
8 very suspicious. Yes?
9 DR. LARSON: A couple of questions. Correct me
10 if I am wrong. I thought that the CDC had funded you for
11 doing some blinded analysis.
12 DR. NICOLSON: No.
13 DR. LARSON: No. Okay.
14 DR. NICOLSON: No. We are -- it is under
15 discussion but they don't have a grant mechanism in the
16 CDC. DR. LARSON: So they --
17 DR. NICOLSON: So we --
18 DR. LARSON: -- would like you to do it but
19 they don't have the funding.
20 DR. NICOLSON: They don't have a funding
21 mechanism to do it. In other words, they don't give
22 external grants. The only way they could do it is if we
298
1 entered into some kind of an agreement to test X number of
2 samples for X amount of money or whatever.
3 They do not have a budget to be able to do it
4 that way, to account for all this. So we may have to do
5 just a small little pilot study.
6 DR. LARSON: Okay.
7 DR. NICOLSON: Or we will fund it ourselves
8 internally. I am moving from the University of Texas to
9 the University of California. I previously was a
10 professor at the University of California. In 1980, I
11 moved to the University of Texas M.D. Anderson Cancer
12 Center to start a new unit to work on cancer invasion and
13 metastasis.
14 Well, I am now going back to the University of
15 California. I will be the director of the Institute for
16 Molecular Medicine at the University of California at
17 Irvine School of Medicine. This is a new institute. We
18 hope to have a unit in this institute that will cover the
19 molecular aspects of chronic diseases such as CFS.
20 DR. LARSON: And would you just discuss a
21 little bit how your hypotheses and work and findings
22 interrelate with Dr. Hyman's?
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1 DR. NICOLSON: Well, basically my belief now I
2 am working on this, is that we are dealing with a
3 situation where there are probably multiple infections
4 involved. Both of us have probably been using enough of
5 the broad-spectrum antibiotics so we are probably knocking
6 down multiple infections with the antibiotic treatment.
7 That is a hypothesis at this point. We are
8 going to actually test that. The next organism we are
9 going to look at is brucella. Why brucella? Well,
10 brucella is a very important pathogen in the biological
11 warfare programs of a variety of countries, including the
12 United States, Russia, even Iraq. So we are going to test
13 for that next.
14 DR. LARSON: It is also a chronic disease in
15 the Middle East.
16 DR. NICOLSON: It is also a chronic disease in
17 the Middle East. But what we will also be looking for is
18 some of these unusual genes that may have been used to
19 weaponize it. So we are not just looking for chronic
20 infections. We will also be looking deeper.
21 Now, I have been put under certain restrictions
22 at my institution because I work at a cancer institution.
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1 I am not allowed to isolate any of these possible vectors
2 or organisms so I had to agree to that before allowing me
3 to continue on this work.
4 That restriction won't apply when I move so we
5 may be able to, in fact, isolate it and replicate the
6 disease in animals which would be fulfilling Cox'
7 postulate, in a way. We are trying to look at setting up
8 an animal model but we can't do it at the M.D. Anderson
9 Cancer Center.
10 So I have been placed under a number of
11 restrictions at M.D. Anderson that I don't like. It has
12 really restricted our academic freedom quite significantly
13 and that is going to change.
14 DR. LASHOF: Is that one of the reasons you are
15 moving?
16 DR. NICOLSON: Yes, it is.
17 DR. LANDRIGAN: Other questions? I just had to
18 step out there for a second. Excuse me.
19 DR. NICOLSON: Beg your pardon?
20 DR. LANDRIGAN: Excuse me. I just had to step
21 away for a moment. Any other questions? Okay. Well,
22 thank you, Dr. Nicolson. That was a fine presentation.
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1 We are now ten minutes from adjournment. Are there any
2 comments that any members of the committee would like to
3 make?
4 We do have one member of the public who has
5 asked -- one further member of the public who has asked to
6 make some remarks but I want to make sure first that
7 nobody in the panel has anything to say because it was
8 scheduled for panel discussion at this point.
9 If there is nothing from the panel, and I see
10 that there is not, let me -- if Ms. Sandy -- Ms. or Mr., I
11 am not sure -- Sandy Gragg is still here? Ms., yes. If
12 you could come forward. Please do keep it brief because
13 we want to wrap it up on time but we would love to hear
14 from you.
15 MS. GRAGG: My name is Sandy Gragg. I served
16 with the 93rd Evac Hospital in Saudi Arabia. And prior to
17 going to Saudi, I was -- I felt like I was too young to be
18 in my body, if that makes sense. I felt like I was too
19 young to be out of high school, that I had three kids.
20 I was very active, very energetic. My
21 memory -- like, when I went to nursing school -- I am a
22 nurse -- I never once studied. All my friends had to
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1 study but I could just read something over and I could
2 remember it word for word when it came to test time.
3 Since I have returned from Saudi -- oh, in
4 Saudi we were first at a place called Cement City which is
5 where we first started taking the little white pills that
6 they gave us. And when I was at Cement City I was part of
7 the rear detachment because I was one of the drivers for
8 one of our five-tone trucks.
9 And we were outside. And I was showing some
10 people who just came to our unit, you know, because they
11 had missed the main body. I was showing them, you know,
12 where the facilities were. And the guy was standing there
13 looking up and I asked him what he was doing.
14 And he was watching a SCUD come over. So I
15 told him to mask. Said a few choice words to him and we
16 masked and put on our thing. And as we were seeking
17 cover, less than probably from here to where the stairs
18 are out here, a Patriot intercepted the SCUD.
19 And he was saying he had a fine mist come down
20 on him? We had nothing like that. What we had on our
21 uniforms was burnt holes. In our mess tent, we had
22 humongous burnt holes. Right. We had no chemical
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1 reaction on our skin, no itching, none of that. Right.
2 And you just kind of blow it off because they
3 were saying nothing was coming in the SCUD but because we
4 was rear detachment, our main body quit taking the little
5 white pills but because we were rear detachment, we took
6 them an extra three weeks longer than what our main body
7 did. So we actually took them longer than almost anybody
8 else in the Army, from what I understand.
9 When we got to our main base, I had a
10 hemorrhagic cyst which I, you know -- an ovarian cyst that
11 ruptured. So they put me in the hospital. And during
12 this time when I was in the hospital, they came to our
13 unit and gave us the anthrax shots.
14 It was documented everywhere that I did have
15 this. They kept wanting to operate on me. But I kept --
16 I had been in this unit for five years. I was active
17 Army. And I kept saying, No, no, no, no. So finally it
18 stopped bleeding but during this time they came and gave
19 me the anthrax shot.
20 All I asked them is, I don't mind taking the
21 shot if that is what you say we have to do but I want it
22 documented. I had my shot record right there. They said,
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1 No. This will not be documented anywhere.
2 And I go, Then I don't want the shot.
3 And my orders were, Sgt. Gragg, you will take
4 this shot either on your own or I will order you to take
5 this shot and we will physically hold you in order to give
6 you this shot.
7 So you had no options. As for the little white
8 pills, when we started taking those, I had a lot of
9 reactions to them. I had the photosensitive to the light.
10 I had muscle twitching. You could sit there and see my
11 muscles twitching. Severe headaches.
12 And because I had reactions and went to the
13 doctor, you know, because I didn't -- me, I always
14 rationalized things. If you are a nurse or a doctor and
15 you are sick, you rationalize what is wrong with you. You
16 don't say, Oh, well, this is causing it. You say, Well, I
17 am just tired, or, You know, I just have a sinus infection
18 so it is bothering my eyes.
19 But because I had gone to the doctor and he
20 said that that is why I was sick was because I was taking
21 these pills, my sergeant physically watched me take them
22 every time, where some people, they would quit taking
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1 them. But I was physically watched every single time for,
2 like, six weeks in taking these pills.
3 So for six weeks I took these pills three or
4 four times -- I think it was three times a day we took
5 them. But since I returned from Saudi -- we moved to San
6 Antonio in August of, I guess, '91. At that time, I was
7 sick. I could already feel a difference in me.
8 I was gaining weight. I gained 40 pounds in
9 less than four months. And at this time, I was doing
10 triple exercising. I was exercising with the remedial PT
11 just because I was gaining this weight. I was exercising
12 on my own. I was exercising -- all this stuff. I wrote
13 down everything I ate.
14 And I went to the doctor and I told him,
15 Something is wrong. I quit having menstrual periods.
16 The only time I ever missed a period in my life
17 was when I was pregnant. I felt terrible. I was sick all
18 the time. You had no energy. And when I went to the
19 doctor at Fort Sam Houston, what the doctor told me -- I
20 was 32 years old -- he goes, You have OWS.
21 And I go, What is OWS? And he told me, Old
22 woman syndrome. I told him I was 32 years old. My mother
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1 still had periods, you know. You don't quit having
2 periods. You don't start going through menopause at 32
3 years old if it is not a family history. You don't --
4 After months of arguing with him, I would go on
5 sick call every week because I told him, I don't know what
6 is wrong but something is wrong.
7 Then when the documentation came out that
8 something was wrong with the Desert Storm veterans, my
9 medical records -- because it had not been in the San
10 Antonio paper yet. My mom sent this to me from out of
11 state.
12 I took them to the Army doctors and I just left
13 him a note, Could this be what is wrong with me?
14 And I highlighted all the similar things. And
15 my medical records disappeared until the day I ETS'd out
16 of the Army. The day I ETS'd, all of a sudden, out of
17 nowhere, here is medical records that I haven't seen in
18 two years. They come up, forward.
19 Since I have been -- we made a list. When I
20 got out of the military, I made a list of everything that
21 was wrong. Not because I thought they would do anything
22 but in case something happened like Agent Orange that my
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1 kids would be taken care of.
2 I listed -- and this was back in '92 or '93. I
3 can't remember. I listed the memory loss. I listed -- I
4 have had blood in my urine ever since I returned from
5 Saudi. It is nothing you can see. It is all microscopic.
6 And they can't find any reasons.
7 They have done hundreds of tests. They -- I
8 have got a -- I have had a chronic cough. And then here
9 the last two years, I have developed asthma. And what
10 that doctor told me was that the chronic cough was more
11 than likely asthma all this time but I didn't know.
12 My memory loss is horrible. I am an ICU nurse.
13 DR. LANDRIGAN: One minute, please.
14 MS. GRAGG: Yes, sir?
15 DR. LANDRIGAN: One minute, ma'am.
16 MS. GRAGG: Oh, one minute. I am an ICU nurse.
17 My memory is terrible. I have to write things down, pages
18 and pages and pages of notes. I have already told my
19 husband that after this, this time I am -- after this --
20 within -- by spring, I am quitting nursing because I will
21 not be an unsafe nurse.
22 But my question for you all are, what are you
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1 going to do to help my children? If I am physically
2 unable to work because of serving in the Gulf, you know, I
3 won't qualify for Social Security. When I say something
4 to the VA, all they can say is that, You have filed for
5 compensation.
6 But, you know, that was months and months ago.
7 And all you get is a letter every month. And I don't want
8 the compensation. I want to know what is wrong and what
9 you all are going to do for my children when I cannot
10 work. Who is going to pay their bills? Who is going to
11 buy their groceries? Is the government going to help us
12 at that point?
13 DR. LANDRIGAN: Thank you.
14 VOICE FROM AUDIENCE: [unintelligible]
15 MS. GRAGG: Exactly. I mean, that is my point,
16 you know. What are you going to do? Are my kids going to
17 lose their home? Are we going to be on the street because
18 nobody is going to help us because we went to Desert
19 Storm? And it is not just me, it is all the veterans.
20 Or is it -- you know, what are they going to do
21 for us? What -- you know, are my kids going to end up out
22 on the street like all these other homeless people?
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1 Because my husband -- I make three times a year what my
2 husband makes.
3 But I will not be an unsafe nurse. I will not
4 risk my patients' lives in jeopardy. If you had somebody
5 in an intensive care unit, would you want a nurse who did
6 not know -- could not remember meds that she has given for
7 17 years, what those medications were all of a sudden?
8 Could you -- would you want a nurse that could
9 not remember if she gave a medicine or didn't? I write
10 down everything I do. I tell my charge nurses hundreds of
11 things every single day because I want to make sure I tell
12 somebody. All my coworkers come over and double-check me,
13 not because I am not a great nurse but because they don't
14 want me to make that mistake either.
15 DR. LANDRIGAN: That is very important. Yes.
16 You have got to get it right when you are working in the
17 ICU.
18 MS. GRAGG: That is right. And you know,
19 someone says, Well, you know, when you quit that you can
20 work at McDonald's.
21 You know, you are chronically fatigued. All my
22 entire life I have never wanted to be anything but a nurse
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1 from the time I was two years old. I have never wanted to
2 be anything. And the only reason I am in nursing is, I am
3 a patient advocate. I am for my patients.
4 And that is what drives me to get up every day.
5 That is what drives me to go to work every day, is to take
6 care of those patients. But you know, you push yourself
7 farther for things like that. Because I hate nurses that
8 are in it for the money. They are not in it for the
9 patients. And I am not one of those nurses and I hate
10 nurses that are.
11 But if you go to do something, if you are
12 suddenly from a lawyer or a doctor and they say, Okay.
13 You can go to McDonald's and work because you are no
14 longer mentally capable of working as a nurse or you are
15 no longer mentally capable of working as a doctor, are you
16 going to have the same drive to go to McDonald's every day
17 and do a job for $5 an hour that you have been doing and
18 you make $20 an hour at or $30 an hour at?
19 Are you going to be able to force yourself to
20 get up out of bed and go do that? And $5 an hour is not
21 going to pay your bills.
22 DR. LANDRIGAN: It is not, ma'am. No. Thank
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1 you very much.
2 MS. GRAGG: Thank you.
3 DR. LANDRIGAN: Okay. Well, we have now come
4 to the end of a long but, I think, very interesting day.
5 I really appreciate all the members of the public who have
6 come forward, the veterans and their families. Appreciate
7 the doctors, some of whom have come long distances to
8 testify before us.
9 I have got two announcements to make. First of
10 all, there is a meeting of our full committee in my
11 hometown of Boston on March 26. And secondly, there is
12 another meeting of the panel which is considering clinical
13 syndromes which is scheduled to take place in Atlanta in
14 mid-April. I guess the exact date is not yet determined
15 but it will be made public and it will be announced in the
16 Federal Register just as was done today.
17 Letters will be sent out to the news media.
18 Letters will be sent out to the people on the mailing list
19 informing those who are interested of the exact date of
20 the meeting in Atlanta. Any final comments from the
21 members of the panel? Mr. Rios, a native of San Antonio.
22 MR. RIOS: Just want to assure the veterans
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1 that are here -- I am a veteran myself -- that we on the
2 committee are, I think, objective and we are going to do
3 everything humanly possible we can to make sure that the
4 government is there for the veterans just the way that you
5 were there for our government when we needed you.
6 Thank you for being here.
7 DR. LANDRIGAN: Thank you. Thank you very
8 much. And I declare this meeting adjourned.
9 (Whereupon, at 4:40 p.m., the meeting was
10 concluded.)