The `Syndrome' Gold Rush

An e-mail from the Occ-Env-Med-L
April 22, 1998


Those who think they suffer from Multiple Chemical Sensitivity, Chronic Fatigue Syndrome or Fibromyalgia Syndrome better hold on to their wallets.

The following e-mail from Albert Donnay, executive director of MCS Referral & Resources, Inc., indicates these people may soon be paying for even more unnecessary, expensive and fruitless diagnostic testing. And even if the patients aren't paying for the diagnostics tests, someone will be, either through taxes or insurance premiums.

But one thing's for sure, the quacks who order the tests and the diagnostic testing labs will soon be in the money!

Albert Donnay responds:

The Junkman doth protest too much! The 3-way screening for Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity being promoted here consists of a 1-page questionnaire with 10 questions that takes no more than 5 minutes to complete and 3 minutes to evaluate. None of these three disorders require any laboratory testing of any kind for their diagnosis. Most patients with CFS, FMS or MCS spend years seeing numerous specialists at great expense before they even find one willing to consider these diagnoses. By encouraging physicians to use this screening questionnaire for patients complaining of chronic fatigue, widespread muscle and joint pain, and/or chemical sensitivity, we hope to reduce the time and expense currently wasted by doctors who fail to do this screening.

Albert Donnay, MHS
Exec. Director, MCS Referral & Resources, Inc.
donnaya@rtk.net, www.mcsrr.org

Here's the e-mail in question.

MCS Referral & Resources is promoting a consensus statement on the need for 3-way screening of chronic Chronic Fatigue Syndrome (CFS), Fibromyalgia Syndrome (FMS), and Multiple Chemical Sensitivity MCS) in both research and clinical practice due to their already well documented overlap. We plan to present statement this at a research planning conference that CDC will be hosting in September on MCS and multiple chemical exposures among Gulf War veterans. We're seeking the support of both advocacy groups and the medical community (clinicians and researchers). Please let me know if you'd be willing to sign on to the following (as is or with any particular modifications):

Consensus Statement on the Need for 3-Way Screening of CFS, FMS & MCS --------------------------------------------------------------------- "We, the undersigned medical researchers, clinicians, and advocacy organizations with extensive experience in Chronic Fatigue Syndrome (CFS), Fibromyalgia Syndrome (FMS), and/or Multiple Chemical Sensitivity MCS), recognize that these disorders overlap to varying degrees in the majority of cases. We therefore recommend that, whenever any one of CFS, FMS or MCS is suspected in clinical practice or studied in medical research, screening should be done for all three disorders using published diagnostic criteria. Patients should be informed of all their diagnoses, and research results should be reported in terms of each other disorder and their overlaps. We further recommend that such 3-way screening be made a requirement of all federally funded research into CFS, FMS and MCS, since the results of such research cannot be reliably interpreted without this information." ----------------------------------------------------------------------

The Fibromyalgia Network has already made such three way screening a requirement of all the research it funds and we've asked the CFIDS Association to do the same. Separate from my promotion of this consensus through MCS Referral & Resources, I am also the research coordinator of the Johns Hopkins Multi-Center Study of MCS Immunology in which we also are doing three-way screening of both cases and control (although not required by our funder, the state of Washington). It's relatively easy to do and the results are quite surprising, as we will be discussing at a conference being sponsored by the state of washington later this year. Whether or not other researchers feel they can sign on to the above statement, I hope they'll at least try doing some three-way screening. The simple 2-page (10-item) questionnaire used in the Hopkins study is available upon request from MCS Referral & Resources. -- Albert Donnay, MHS, Exec. Director, MCS Referral & Resources, Inc., 410-362-6400, fax 362-6401, donnaya@rtk.net, www.mcsrr.org


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