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Why we’re against the IOM

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.

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Written by Russell Logan

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Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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