New Institute of Medicine Report Commissioned by Department of Defense
Finds 41% of Gulf War Veterans with Undiagnosed Illnesses
­ More Than Twice The 20% Reported By DoD's Dr. Rostker on January 8 ­
But 17 Times Less Fibromyalgia and 95 Times Less Chronic Fatigue Syndrome
Than Reported Last Year by Researchers with the Department of Veterans' Affairs

A new report by the Institute of Medicine (IOM) Committee on the Comprehensive Clinical Evaluation Program (CCEP) finds 41% of Gulf War veterans with "undiagnosed illnesses." This is more than twice the 20% repeatedly claimed by Department of Defense (DoD) officials, and most recently by Dr. Bernard Rostker, Special Assistant to the Secretary of Defense for Gulf War Illnesses, at a press conference on 8 January 1998. The IOM's analysis includes all unexplained illnesses in the CCEP database, while the DoD--as MCS Referral & Resources first reported in August 1995--is still covering up the true extent of Gulf War veterans' illnesses by publicly reporting only those whose "primary diagnosis" is unexplained.

Even though the IOM's CCEP committee said in its first report in 1996 that "it is not possible to estimate the prevalence of these conditions from the CCEP data," it has now done just that. Its new report quotes these same CCEP data and accepts without question the DoD's claim that CFS is present in only 0.3% (1/3 of 1%) of all cases and FMS in just 1.28%.

Yet research currently underway sponsored by the Department of Veterans' Affairs (VA) -- which Dr. Roskter referred to in his press conference as "definitive"--suggests that both the DoD and VA may be missing these diagnoses on a massive scale. Preliminary findings released in June 1997 by a VA study of over 1,000 Gulf War veterans randomly selected from the VA Registry show 28.5% with previously undiagnosed CFS, 12.5% with undiagnosed MCS, and 7% with both CFS and MCS. Another VA study of Gulf War veterans randomly selected in Oregon and Washington found 27% with undiagnosed CFS and 18% with undiagnosed fibromyalgia but did not screen for MCS. [See MCS R&R press release of 25 June 1997 for details.]

Although Dr. Howard Kipen, the VA researcher who reported the 28.5% with CFS, is a member of both this CCEP Committee and the VA's Gulf War Expert Scientific Advisory Committee, he never publicly discussed this finding with either committee, and the 95-fold discrepancy between his VA data on CFS and the DoD's is not mentioned in the IOM report. The low FMS estimate also is suspect, given that FMS is the second most common rheumatological disorder after arthritis and its prevalence in the general population is three times higher (in the range of 3% to 4%, according to the American College of Rheumatology). While healthy troops would be expected to have a lower

Press Release, MCS Referral & Resources, 21 January 1998, page 2

prevalence of FMS than the general population, this is not true of Gulf War veterans, for whom musculoskeletal disorders are the most common category of diagnosis (45% overall).

The new IOM report also devotes three pages to MCS (the same as for CFS and FMS), but it does not cite any data on MCS prevalence among either Gulf War veterans or civilians. It does not even mention the MCS questionnaire used in Phase 3 of the initial CCEP, whose development was led by Lt. General Ronald Blanck, now Surgeon General of the US Army. The DoD discontinued distribution of the questionnaire without explanation after just 6 months when Phase 3 was abandoned in January 1995, and the data collected have never been released.

To its credit, the IOM committee stresses that CFS, FMS and MCS are not really "ill-defined conditions," as the DoD has characterized them up to now. It says all three are "actually fairly well defined by operational criteria"--although it misquotes the "Cullen definition" of MCS from a paper co-authored by Dr. Kipen (which itself misquoted the original)--"even if they are medically unexplained." The committee also recognizes that "Despite the fact that they are medically unexplained, they may cause significant impairment." It decided, therefore, "to refer to this spectrum of illnesses as medically unexplained symptom syndromes" (italics in original). And while the committee acknowledges that "Medically unexplained symptom syndromes are often associated with depression and anxiety," it says "this does not imply that the syndromes are psychiatric disorders."

With regard to treatment, the committee says it "believes that it is important to identify and evaluate the symptoms associated with these conditions and then treat those symptoms" (p3). It specifically recommends, however, against the avoidance of offending chemical exposures, even though this is the one treatment strategy that MCS patients have consistently reported as the most beneficial in numerous studies. The committee instead emphasizes the need for stress reduction techniques (specifically massage, physical therapy, meditation and exercise) and medications to control symptoms. Yet published studies show only a very small percentage of MCS patients report significant benefit from any psychological intervention. (The review paper cited by the committee for this recommendation, also co-authored by Dr. Kipen, was strongly criticized on this and other points by one of the VA's expert consultants, Dr. Claudia Miller.) The IOM's promotion of pharmaceutical treatments is equally unjustified and runs a real risk of harming Gulf War veterans, since it is widely recognized that MCS patients can not tolerate most medications.

Finally, even though the IOM says the CCEP "be encouraged to identify patients in this spectrum of illnesses early in the process of their disease," it does not recommend that the CCEP start using any screening questionnaires or diagnostic protocols to do this. MCS Referral & Resources provided the IOM committee with a simple 10-question form that is currently being used in several studies to screen for CFS, FMS and MCS, but this is not mentioned in the report.

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IOM CCEP Committee