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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Dr. Ellie Stein against IOM contract

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Oct 18, 2013.

  1. Ember

    Ember Senior Member

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    “I gave my signature but it somehow didn’t get included on the final copy of the letter.”

    http://www.mecfsforums.com/index.php/topic,18046.0.html
    justinreilly, August59, Nielk and 4 others like this.
  2. alex3619

    alex3619 Senior Member

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    Go Ellie! I knew there was a reason I liked her when I met her in 1999! The professionals, who probably know more than we do about what is going on but have constraints on what they can do, have mostly come down on the side of the CCC and against the HHS/IOM. We need to support them.
  3. Ember

    Ember Senior Member

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    As a Canadian, I had to laugh when I read David Egan's further fallback position for dealing with the IOM contract:
    But Dr. Stein's observation here is no laughing matter: "Although this action by the US Government is American, if another definition of ME/CFS is developed by people who have no expertise in the field, it will add to the confusion world wide about how to diagnose ME/CFS and it will affect us here in Canada."

    Dr. Stein urges Canadians to sign “a world wide petition against this effort,” but she provides a link to thank the ME/CFS experts for their letter instead. The petition against “this action by the US Government” is found here.
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  4. alex3619

    alex3619 Senior Member

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    I have been thinking of damage mitigation quite a bit, but I don't usually mention it as the main goal is to stop the IOM.

    In one specific sense, the idea of accepting ICC and CCC and not accepting IOM makes sense, but it has nothing much to do with patients. Its about the researchers.

    Those with private funding can probably adopt CCC or ICC and bypass the IOM, producing the focused research we want.

    Those with public funding, especially from HHS, may be constrained to use the IOM definition. However they can still subgroup/reclassify, including using the CCC. When bad, lackluster or useless data comes out of the group defined by IOM, and good data comes out of the group defined by CCC, then it will show up the IOM definition as useless.

    Finally there is the issue that any future definition related to the IOM definition might be mandatory in funding studies, and then used to prevent funding to studies that violate this. However our researchers can use this definition, then rework the data so that only CCC or ICC patients are concluded, and publish a separate study.

    I am well aware that the research definition and the clinical definition are different. However in any clinical trial the IOM definition might be used (e.g. as Oxford is used in UK studies) if its "operationalized" for use like that. Further, any IOM definition might strongly influence a future new research standard. Also, confusion or conflating between a research and clinical definition might bias the granting of funds to studies.

    An additional fallback position is the research definition. We need to be sure that is right, and not permit poor research standards to be used in defining it.

    The ultimate fallback position is to push for verification of our possible diagnostic tests, then for transition to commercial use, then we start using them, bypassing the IOM entirely.
  5. Ember

    Ember Senior Member

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    The clinical and research definitions are being worked on simultaneously, and influence between the two processes is mandated. In the Statement of Work, the IOM committee is instructed to “communicate and coordinate with the Office of Disease Prevention at NIH regarding their ongoing Evidence- based Methodology Workshop for ME/CFS in an effort to minimize overlap and maximize synergy.” The SOW further stipulates that “the coordination with NIH should assure that relevant information is shared and that key messages are coordinated.”

    Jennie Spotila writes concerning the research definition, “The problem here is that we don’t have enough information to judge the EbMW process, since we don’t know who is on the organizing committee. We can’t judge the case definition process, since we have absolutely NO information about it whatsoever. “
    justinreilly likes this.
  6. alex3619

    alex3619 Senior Member

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    Yes, we are operating in a vacuum. That has to change if they hope to get us to trust them, and its likely that its too late for that to happen. What we do know is the outcome of two prior evidence-based reviews, one by IOM on CMI (as they now call it, formerly Gulf War Ilness) and one on CFS (Oxford) from the UK's NICE that was looking at treatment recommmendations. Evidence-based can be buzzword for culling any science they do not like, by downplaying, excluding or demoting its value.
    Delia, justinreilly and Nielk like this.

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