NEWS RELEASE

For Immediate Release

June 26, 1999

FROM: MCS Referral & Resources, www.mcsrr.org,

508 Westgate Rd, Baltimore MD 21229
CONTACT: Albert Donnay, President MCS R&R

adonnay@mcsrr.org, 410-362-6400, fax 362-6401

VA FINALLY FINDS A UNIQUE GULF WAR SYNDROME

AND ALSO ACKNOWLEDGES OVER 50 CASES OF ALS

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After 8 years of government officials repeatedly denying the existence of any new or unique Gulf War syndrome, the Department of Veterans' Affairs has finally concluded-in its own "Nationwide Health Survey of Gulf War Era Veterans"-that, based on data from 11,442 Gulf War veterans and 9,476 non-Gulf War veterans:

"There is a cluster of symptoms unique to Gulf War veterans which could be defined as a new Gulf War Syndrome."

This is the entire conclusion of a short poster entitled "Unique Cluster of Symptoms Among Gulf War Veterans: Cluster Analysis" that was included in the conference proceedings (page 99) but not officially discussed by the VA at the Conference on Federally Sponsored Gulf War Veterans' Illnesses Research held June 23-25, 1999, in Pentagon City, VA.

The study was done by Drs. Han Kang (the VA's chief epidemiologist), Fran Murphy, Clare Mahan, and Kyung Lee in the VA's Central Office and Drs. Samuel Simmons, Heather Young, and Paul Levine at George Washington University. Its findings replicate and validate those of a more comprehensive factor analysis reported in 1997 by Dr. Robert Haley et al., independent researchers at the Univ. of Texas funded by Ross Perot (see .Haley RW, Kurt TL, Hom J, Is there a Gulf War Syndrome? Searching for syndromes by factor analysis. JAMA 277(3)215-222, 1997).

Dr. Haley presented a paper and several posters himself at this meeting, including a "Confirmatory factory analysis of Haley's three primary Gulf War syndromes in a (N. Texas) VA population of Gulf War veterans."

The VA and Haley both "factored out" the same three symptom clusters or syndromes, although the VA chose to recognize only the most severe, which it called Neurological (and Haley called Confusion/Ataxia). Both also factored a long list of self-reported exposures, and both found the same one-exposure to nerve gas-factored most significantly with Syndrome 2 (odds ratio of 4.4 compared to those without the syndrome).

Dr. Haley also presented functional MRI data showing brain abnormalities in intracellular chemicals indicative of reduced neuronal and glial cell mass in all three syndromes. Syndrome 1 abnormalities were focused in the basal ganglia, Syndrome 3 in the pons area of the brain stem, and Syndrome 2 showed abnormalities in both. These areas of the brain are already associated with other chronic neurological disorders like CO poisoning, MS, Parkinsons and Alzheimers.

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The VA claims this cluster was self-reported by 2.4% of the 11,442 deployed veterans (n=277) but only by 0.4% of the non-deployed veterans, among whom it did not factor out as a separate syndrome.

The VA also looked at the relative risk for other medical conditions. Most significantly, brain seizures were reported by 22.2% of those with this VA Gulf War Syndrome but only 0.4% of the entire population, and neuralgia/neuritis by 32.1% vs. 1.7%.

Unfortunately and unconscionably, now that the VA has finally discovered a Gulf War Syndrome, it has no plans to study it any further.

• The VA says it has no plans to examine or follow any of the 277 cases found in this study-despite its having recently initiated a third and final phase of this same study to conduct extensive physical and laboratory evaluations of 1,000 deployed veterans and their families compared to 1,000 non-deployed. With recruitment and testing scheduled to be conducted through 2002, VA could easily include all those with this "new and unique" Gulf War Syndrome if it cared to do so.

*Nor will VA screen any of the Phase 3 subjects it is selecting for this Gulf War Syndrome, to see if any other cases may be detected, and it has no plans to train its doctors to identify or diagnose this Gulf War Syndrome in their VA Registry examinations.

• Nor does VA have any plans to compensate any Gulf War veterans who may have this syndrome, and it does not even plan to warn them about the greatly increased relative risk they face for neuralgia (RR=18.9) and seizures (RR=55.5) compared to Gulf War veterans without this syndrome. This incredibly high risk of seizures may be contributing to the veterans' higher than expected rate of fatal accidents while driving.

The other two syndromes factored by the VA in the National Health Survey were:

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Syndrome 3: Musculoskeletal/Rheumatologic (called Artho-Myo-Neuropathy by Haley et al)

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ALS Among Gulf War Veterans

Administration officials at this meeting also were unwilling to disclose any plans for studying, treating or compensating Amyotrophic Lateral Sclerosis (ALS), aka Lou Gehrig's Disease. In response to a question about "over 40" cases in Gulf War veterans, John Feussner, director of Persian Gulf Veterans Coordinating Board's Research Working Group, said he was looking into it but "not at liberty to tell you what our immediate research plans are."

Although the first internet reports of ALS appeared at least three years ago on the Gulf War Veterans Mailing List-and one veteran even wrote a book about his own experience with ALS in 1998 (Falcon's Cry by Michael Donnelly, Praeger Publ.)-- Feussner said had not heard of any ALS in Gulf War veterans until some veterans at the CDC meeting in Atlanta asked him to look into it in February of this year. But he did acknowledge that VA now knew of more than 50 ALS cases, all in relatively young male veterans.

ALS is rare with a prevalence in the general population of only 1 to 5 per 100,000 and it commonly starts in mid to late life. If no more than the 50 cases reported so far are confirmed, this would still be 1.4 to 7 times more than expected among 700,000 Gulf War veterans. This is by far the most serious risk of Gulf War deployment ever reported, as ALS is a "wasting disease" of neuromuscular degeneration that commonly progresses rapidly and is almost always fatal (50% die within 3 years of diagnosis, 20% survive 5 years and only 10% survive more than 10 years).

A comprehensive differential diagnosis is needed to rule out syndromes with neurological symptoms similar to those of early ALS, such as the chronic sequellae of lead or pesticide poisoning. The VA apparently has not noticed that 4 of the 7 symptoms of its new Gulf War Syndrome (#2 above) are considered classic early signs of ALS:

Given all these findings, MCS Referral & Resources urges the VA to promptly:

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P.S. Phase 3 of the VA National Health Survey of Gulf War Era Veterans will be screening for Chronic Fatigue Syndrome and Fibromyalgia but not for Multiple Chemical Sensitivity, despite VA's own data (presented in the same Gulf War Syndrome poster discussed above) showing chemical sensitivity reported by 17% of the deployed compared to just 6% of controls. These rates are more than 3 times those reported for chronic fatigue in the same study (5.2% v. 1.2%).

When Albert Donnay asked why MCS was excluded, Dr. Fran Murphy said it was considered but rejected because VA wanted to focus only on the most prevalent conditions reported in Phase 2 that could be diagnosed with objective tests. Of course, CFS, like MCS, is both defined and diagnosed only by medical history. When asked in followup what tests VA would be using to diagnose CFS, Dr. Murphy admited that there were none, but she defended its inclusion on the grounds that VA will be testing for some of the disorders that exclude the diagnosis of CFS!

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