professional outreach, patient support and public advocacy

devoted to the diagnosis, treatment, accommodation and prevention

of Multiple Chemical Sensitivity Disorders

6 August 1995

Prepared For: Dr. Stephen Joseph, Assistant Secretary for Health Affairs, Dept. of Defense (DoD)

Persian Gulf Expert Scientific Committee, Dept. of Veterans' Affairs (DVA)

Interagency Persian Veterans Coordinating Board

Committee on the DoD Persian Gulf Syndrome CCEP, Institute of Medicine

White Office of Science & Technology Policy

Presidential Advisory Committee on Gulf War Veterans' Illnesses

Yellow Ribbon Commission, Operation Desert Shield/Desert Storm

U.S. Senate Committee on Veterans' Affairs

U.S. Senate Committee on Armed Services

U.S. House Committee on National Security

U.S. House Committee on Veterans' Affairs

Prepared By: Albert Donnay, MHS

On 1 August 1995 the Department of Defense (DoD) issued its third report on its Comprehensive Clinical Evaluation Program for Gulf War Veterans (CCEP). As summarized in a DoD news release (No.413-95) and touted by DoD Assistant Secretary Dr. Stephen Joseph at a press briefing the same day, this study allegedly found no evidence of any unique Persian Gulf War illness or syndrome, with "ill-defined" (ie. unexplained and undiagnosed) conditions noted as a problem in only 17% of CCEP participants. This figure refers only to the relative frequency of undiagnosed illness among "primary diagnostic categories," however, which MCS Referral & Resources has previously critiqued as virtually meaningless given that most CCEP participants have numerous diagnoses.

In apparent response to this criticism, this latest CCEP report for the first time includes data on the frequency distribution of all diagnostic categories and not just the primary diagnosis. According to the DoD's own data, an much more significant 41% of all CCEP participants have some "ill-defined" conditions, second only to the 45% overall with musculoskeletal conditions (Table 4). These data are buried on page 19 of the report, however, and not mentioned in the DoD press release, the report's executive summary or conclusion, or by Dr. Joseph, in what can only be interpreted as a deliberate attempt to continue downplaying the true extent of unexplained illness among DoD personnel. While Dr. Joseph and the DoD continue to highlight stress and other psychological conditions as the leading primary diagnostic category, they fail to point out that these diagnoses rank only third overall.

Given the numerous other inaccuracies, inconsistencies, and misrepresentations found in this report, however, as documented below, it is impossible to know which, if any, of the DoD's CCEP data and analyses can be trusted. MCS Referral & Resources welcomes Dr. Joseph's newly stated commitment to provide independent researchers with access to its CCEP data--as we first requested in February 1995--but he has promised to do so only "eventually," at some unspecified time "in the future." This DoD coverup must not be allowed to continue while Persian Gulf veterans continue to suffer from misdiagnosis and non-diagnoses. We urge the numerous committees and commissions with oversight responsibility in this matter to press the DoD for a full and prompt release of all its CCEP diagnostic and treatment data.

2326 Pickwick Road, Baltimore, MD 21207-6631, 410-448-3319, fax 448-3317

The DoD report suggests that stress may be the most likely cause of the CCEP participants' complaints (p8,p44) while dismissing "other potential environmental hazards that some service members may have been exposed to" either "because exposures involved small numbers of troops or because the agents are not known to cause the chronic symptoms reported by returning veterans" (p10). From the CCEP's own data, however, it is clear that huge numbers of troops were exposed to these environmental hazards, ranging from 39% to paint, 44% to CARC, 45% to solvents, 64% to personal pesticides, 68% to [unvented] tent heater fumes, and 85% to diesel and other fuels. (Table 2, p16). All these neurotoxic substances are well known in medical literature to cause multiple chronic symptoms similar to those being seen in Persian Gulf veterans, to say nothing of their possible synergistic effects when exposed in combination over many months. None of these similarities are discussed or even acknowledged in the report.

This DoD report says the "CCEP provides a two-phase, comprehensive medical evaluation" (p11). Yet all prior DoD reports and press releases on the CCEP describe is as three-phase evaluation. The third phase was designed specifically for those who still had undiagnosed conditions at the end of phase two, and it was the only phase which included an evaluation for multiple chemical sensitivity (MCS). The DoD has never presented any data o\ phase III or even on how many patients reached this level of evaluation, and it gives no information on why phase now has been dropped. Since the DoD acknowledges a growing percentage of CCEP participants with undiagnosed conditions (17% of the primary diagnoses as compared to 14% in its first report, and 41% overall), it would seem that phase three is more needed than ever. At the very least, the DoD should release all of its data from phase three, including the results of its questionnaires on the prevalence of MCS symptoms.

In apparent response to our prior criticism of the DoD's limited coding of CCEP data, the DoD now claims that its "... medical coders review records for completeness and accuracy of diagnostic coding before entering the data into a computerized database" (p13). Yet personnel in the coding office still acknowledge that only the patients' first seven diagnoses ("primary" plus six) are recorded in the database since this is all that their data entry contractor was hired to enter. They also acknowledge, based on their first-hand review of the CCEP's medical records, that the majority of CCEP participants have more than seven diagnoses, which mean that not all diagnoses are even being recorded in the DoD database. Moreover, since the catch-all diagnosis of "other unknown and unspecified cause" (ICD-9 code #799.9) is usually listed last, it is the most likely category to be underrecorded. This means that even the 41% acknowledged by the DoD to have some form of undiagnosed illness is probably a significant underestimate.

A table on "Symptom Frequency for CCEP Participants" based on the "Provider-Administered Symptom Questionnaire" is presented without correcting for misleading inclusion of people "with no chief or any complaint" (p17, Table 3). These people presumably entered CCEP to obtain a free evaluation and their inclusion in the DoD 's analysis significantly dilutes the true frequency distribution of these symptoms among those who are actually ill, as shown in Comparison Table 1 below. The DoD also does not explain or even note the extraordinary decline in the reported frequency of every symptom also listed its CCEP report of December 1994 on the first 1,000 patients. These declines range from 15% to 33% with an average of 23%, as shown in the same table. Yet over the same period the DoD reports a 3% increase (from 14% to 17%) in the number with these ill-defined signs and symptoms as their primary diagnostic category.

Another explained discrepancy concerns the average number of symptoms per participant, which the DoD cites in this report as 5 (p18). As shown below, however, the latest symptom frequency data add up to an average of only 3.8.

Note also that some of the most controversial "unexplained" symptoms of Gulf War Syndrome do not even appear on this provider-administered questionnaire, such as chemical sensitivity, photosensitivity and metal sensitivity. Other listed symptoms known to be quite common in the general population, however, such as insomnia and allergies, were allegedly not reported by anyone (0%), even though insomnias are described elsewhere in the report as among the most frequently diagnosed sleep disorders among CCEP participants (p38).

For both DoD personnel and spouses (p19, Table 4, and p21, Table 5), the DoD cites percentages of those with a primary diagnostic category of "healthy" (11% and 10% respectively) that are only half as large as the total percentage diagnosed as "healthy" (ie. in any diagnosis, 19% and 20% respectively), but it doesn't explain this obvious discrepancy. What other primary diagnosis could a healthy person possibly have? This highlights the uselessness of diagnostic data presented only by diagnostic category. No meaningful interpretation is possible as long as the DoD continues to withhold data on the relative frequency of each particular ICD code in these diagnostic categories.

For the children of Persian Gulf veterans, the DoD presents frequency distributions for an undefined mix of both specific primary diagnoses and primary diagnostic categories (p22, Table 6). These data say nothing about the overall prevalence of these diagnoses and are not comparable to the diagnostic data on either personnel or spouses.

As discussed in the introduction, above, the DoD continues to downplay the true extent of all the CCEP diagnoses by focusing only primary diagnostic categories. Even though this report is the first to present data on contains the first data released reporting publicbeing seen Most serious is the DoD's on-going public focus

Given that active duty personnel with symptoms of Gulf War Syndrome who acknowledge difficulty performing their jobs are routinely removed from their posts and transferred to medical hold units or discharged to DVA care, it is not surprising that so few CCEP participants acknowledge missing a significant number of work days due to their illness. The DoD, however, does even not acknowledge that those most severely disabled by Gulf War Syndrome have already been discharged to DVA care and are therefore ineligible to participate in the CCEP. Only by examining the discharge records of DoD personnel with Persian Gulf experience can the true extent of "lost work" disability due to Gulf War Syndrome be assessed.

The DoD claims that, at the conclusion of their "medical evaluation," 6429 participants responded to a question about their satisfaction with "the care you received in the program" and that 5853 (or 91%) "replied affirmatively" (p23). This is the wrong question to ask, however, since the CCEP is a comprehensive clinical evaluation program involving a busy but brief hospital visit that--by design--includes no specific care or treatment. It is not clear, therefore, what "care" the respondents were evaluating. The CCEP report provides no information on evaluations completed by spouses and children (if any were even requested), and no information on evaluations completed by participants at the end of Phase 3 (prior to its termination). The data presented on Phase 1 and 2 evaluations don't even add up to the totals noted above. The DoD says that 6380 completed their evaluations after Phase I, which leaves only 49 (=6429-6380) to complete evaluations in Phase II or III. Yet in the same sentence, the DoD says 720 completed Phase II evaluations (p23). Based on these data, at least 7100 (=6380+720) completed evaluations, and their combined satisfaction rate was 88% (= (5581+695)/(6380+720)), not the 91% claimed.

In conclusion, the DoD's report on the first 10,020 Persian Gulf personnel evaluated by its CCEP is rife with miscalcuations and misrepresentations. An entire phase of the CCEP program has been dropped without explanation, the few data presented in detail are incomplete, and the conclusions drawn from them are unreliable. We urge those responsible for oversight of the CCEP to insist that its research be more openly and honestly reported in the future. Assistant Secretary Joseph, in particular, should be called on to account for his misleading statements about the CCEP's findings to Congress and the public.