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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Question of others here

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Jan 20, 2014.

  1. Andrew

    Andrew Senior Member

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    The forum poll feature does not allow long questions. But I'm curious how others feel.

    Assuming the IOM comes up with a new criteria, should they recommend that it not be put into use unless it is field-tested along side of the Canadian Consensus Criteria and shown to be superior in differentiating patients?
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    Of course. But will they? Of course not. Or even worse, they will do it improperly so the results match what they want.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, I agree with you Andrew, they've got to field test it first.
     
  4. alex3619

    alex3619 Senior Member

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    Nobody in EBM, so far as I am aware, properly field tests their conclusions. However EBM is not, and has not, been extensively used for disease diagnostic definitions, and possibly its never even been done, so there is no precedent.

    A good field tested definition would be great if it is shown to be superior.

    However do keep in mind that over many years there were multiple panels on Gulf War Illness. Do not be surprised if the current panel is only the first.

    The claim may of course be that evidence based reviews do not need field testing, that they are just conclusions drawn from already published (and hence presumably tested) science. However, while this might have some validity for a meta-analysis, where data from many studies are combined, its still not good for something like this.

    I think a field test is mandatory, but the question is: what kind of field test. In the case of most DSM definitions, field testing rarely looks at the validity of what is tested, and typically only looks at the consistency with which it is used.

    It may also be the case that the definition might be OK, but the report itself is fatally flawed, depending on content. That is a separate issue. If they recommend CBT/GET as "evidence-based" then its time for a renewed assault on the evidence-based claim, which is insupportable in my view.

    We also need to be aware that this panel itself is not funded to do a field test. It can only propose such a test. So HHS has to be convinced its worth doing.

    This is all so stupid with the CDC investigation into a research definition still under way, even though that looks to be seriously flawed.
     
    Ecoclimber, SOC and justinreilly like this.

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