IOM On The Case

No announcement and no fanfare, but it became public this week that the Office of the Assistant Secretary intends to award a sole source contract to the Institute of Medicine to create a consensus clinical definition for ME/CFS. Here’s the specific description of the contract:

The Committee will consider the various existing definitions for chronic fatigue syndrome and develop consensus clinical diagnostic criteria for this disorder. Widely accepted clinical diagnostic criteria and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic and translational research. The Committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation.

The Institute of Medicine is an independent non-profit with a great deal of authority, in part because of the independence of their process. The party paying for a report, in this case the government, does not select panel members.

The IOM is currently working on a consensus case definition for Gulf War Illness, and the committee has come under fire from advocates. Dr. Suzanne Vernon of the CFIDS Association is serving on that panel.

We have almost no details, and I have a million questions about it:

  • How much will this process cost?
  • How long will it take?
  • Who will serve on the panel? Will ME/CFS experts be the majority?
  • Will patients have an opportunity to participate? Will that opportunity be more than five minute comments at a public hearing?
  • What can we learn from the Gulf War process, and its advocates?
  • When did OASH decide to go this route?
  • Will NIH still pursue their case definition process? Will the two efforts be duplicative? We know so little about NIH’s process, including these same questions about the panel and timeline.
  • Will anyone from the psychosocial school serve on the panel? What about a patient? What about co-authors from the Canadian and International case definitions?
  • Is the reference to a case definition for ME/CFS a clue as to the intent to treat these as one illness?
  • How will the panel identify subtypes, especially since the published research has proposed so many ways to look at it?
  • Advocates have been banging the case definition drum for YEARS. This has been a subject of great controversy at the CFS Advisory Committee. Many advocates were angry and disappointed that the CFSAC recommendation to hold a workshop on case definition was not followed. So is this the process that will get us where we need to go? We’ll see.

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    5 Responses to IOM On The Case

    1. Pingback: No way to guess how this will turn out….. | Speak Up About ME

    2. Anne says:

      Thanks for always keeping us updated, Jennie. Much appreciated.

    3. Sue says:

      There are already two case definitions, the Canadian and the international. Why do we need another one?? This just seems like a waste of time to me. Let’s just pick one of the two, make it the standard and move on.

    4. Charlotte says:

      Leela Play deserves a hat tip for first finding this contract solicitation. Thanks for posting it here, Jennie, and asking the questions we all are.

    5. Pingback: The Definition 'Coup' - the FEDS Trample CFSAC; Farm Out Consensus Chronic Fatigue Syndrome Definition to Suspect Group: Action Needed - Health Rising

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