A lot has been said about the IOM ‘consensus’ contract to redefine ME/CFS and why many patients oppose it. I have reposted attorney Jeannette Burmeister’s concise summary. For much more on the IOM and Jeannette’s lawsuit against US departments of Health and Human Services and National Institutes of Health, I urge you to visit her blog Thoughts About ME:
“HHS insured bio-medical research will be not be funded or replicated and yet ordered an evidence-based review. You are hurtling down the psychological rabbit hole, repeating the Gulf War Illness anti-science debacle.
Here’s why we’re against the IOM
- HHS hijacked the federal CFSAC recommendation and ignored an unprecedented and impassioned request by 50 international M.E. experts to cease and desist
- The majority on your committee are non-experts. Insanity!
- HHS insured bio-medical research will be not be funded or replicated and yet ordered an evidence-based review. You are hurtling down the psychological rabbit hole, repeating the Gulf War Illness anti-science debacle.
- HHS hired an institution without experience or authority to develop case definitions.
- An excellent case definition, based on science, already exists and the experts endorsed it.
- The IOM has a fatal organizational conflict of interest. I have filed a complaint with the Office of the Inspector General. A formal investigation is under way.
- HHS has broken federal law as to FOIA compliance. 2.5 weeks ago, I filed a lawsuit against HHS and NIH in U.S. district court.
- To circumvent competition rules, HHS moved from seeking a standalone contract to issuing a task order without a clear scope, violating umbrella contract terms.
- HHS issued misleading statements about the nature and terms of, and parties to, the contract.
- And finally, hundreds of thousands of patients’ lives were ruined or ended by a federal consensus definition in 1994. We have long memories. Patients are furious and alienated by what can only be called state-sponsored bullying.