Questionable Assumptions in Gulf War Syndrome Research

September 12th, 2001

To the Editors of the BMJ,

I am an unlikely party to be commenting upon the article recently published in your journal, “Prevalence of Gulf war veterans who believe they have Gulf war syndrome: questionnaire study” by Chalder, et. al. The conclusions and indeed, the premises upon which this study is based, is indicative of a basic error in logic which has led to much suffering every time a puzzling medical phenomena is found. You see, I believe I may have Gulf War Syndrome but am a civilian who has never served in the armed forces of any country.

Does my current belief that I have something similar to this pattern mean that I do have GWS? No, it means that after I became disabled with a multi-system ailment which included brain damage and chemical intolerances, my only hope for an explanation of what had befallen me required I look for similar symptomatology among other patients. This is not a search for support for a nebulous belief system but a fact finding mission. Only through finding persons with commonalities of experience and comparing test results could I hope to provide my puzzled doctors with a map for further inquiries. This is the emerging procedure for those who have yet to be diagnosed by a medical model that insists “stress” is the appropriate ICD 9 code for any ailment that cannot be rapidly assessed and medicated to everyone’s satisfaction. It is also an answer for ailments that government agencies might find themselves responsible for compensating or those associated with the manufacturing of profitable items linked to signs of toxicity in humans.

Little wonder that persons who are inquiring as to their status as possible GWS are those who would end up “knowing” someone with the same problems. Perhaps this is an “effect” of having this illness rather than a part of the cause for it. One does not tell members of a cancer support group that knowing other cancer victims resulted in their having this disease. They sought one another out after the fact. Such a search for other victims of a disease process is often less of a need for emotional support than it is a way to confirm that one’s information and medical consultants are most likely to result in a positive outcome for the patient. LIfe disrupting and life threatening illnesses do not inspire most of us to trust in the words of a single medical advisor who may or may not have expertise in the ailment under scrutiny. Emotional support is a secondary benefit of these encounters.

Official agencies should start to wonder how a sixth or seventh of our fighting GULF WAR forces (American incidence statistics resemble those of British forces) can all have similar stories about their illnesses which are strikingly different from ailments in other wars, pre-Agent Orange. No one can deny that stress has been the hallmark of military service throughout the millenia. It is only in recent generations with the proliferation of chemical weapons and “defenses” such as experimental vaccinations and multiple forms of pesticides (untested in those combinations) that these novel patterns of illnesses are observed. Novel circumstances require new problem solving strategies rather than denial of the experiences of so many of our healthiest citizens. Or are they the healthiest?

That leads us to question the other assumption of this article: that all GW veterans started out as identical in physiological terms. Only when one comes to reject such a hypotheses can we proceed with truly objective investigation. None of the references cited in this article mentions why this population might be different from other servicemen and women. I looked further into the matter and found later studies by Dr. Haley (cited in this study), research by Dr. Abou-Donia of Duke University and a body of work by Dr. Furlong at the University of Washington at Seattle. These articles centered around pesticide exposures similar to those I have had in residential and occupational settings. Persons with such exposures and certain symptom constellations affecting multiple systems, also appeared to have deficiencies in an enzyme known as paroxonase or PON 1. I contacted Dr. Furlong and he graciously permitted me to be tested for this substance which is a test not yet commercially available in this country. Lo and behold, I was similar to sub groups of GWS veterans in my low concentrations of this substance known to aid in the detoxification of organophosphate pesticides and the nerve agent, sarin. Might it be more productive to look into these genetic differences rather than denying the common experiences being reported by veterans and civilians in various degrees of severity?

Facts will always remain in short supply when men and women of science are told to “believe” that what patients EXPERIENCE must always be an unreliable basis for research. Perhaps it should be suggested that this is particularly true when the funding for such inquiries might paint an unprofitable portrait for ailments associated with profitable industries such as pharmaceuticals and pesticide manufacturers. We have only to look at recent and upcoming EPA cancellations of pesticide registrations of organophosphates requiring mediation by the PON 1 system for further clues into this “mystery”.

I am just a recently disabled, middle aged woman without a strong background in medicine. However, I shall have to continue to guide the process of my own diagnosis and treatment until patients are regarded as sentient human beings with a certain set of experiences. We may present clinical problems which require treating physicians to seek out researchers looking into illnesses related to our modern technological “advances”. We must not remain a group of “acceptable risks” sacrificed to current medical-industrial denials of ailments associated with possible cases of chemical injury.

Barbara Rubin

Categories: British Med. Journal

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  1. n/a

    hope this will help you: hydrogen sulfide may have contacted the accumulative metal in your body. H2S is a chemical by product of petroleum and vulcanized rubber. Very difficult to detect, smells like a mix of ammonia and sulfur; really bad rotten eggs.

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