New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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The IOM's failure to identify subgroups. Implications?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Scarecrow, Feb 12, 2015.

  1. Scarecrow

    Scarecrow Revolting Peasant

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    Part of the task assigned to the IOM was to distinguish between subgroups, which they were unable to do:
    In achieving the first part of their task - recommending clinical diagnostic criteria for ME/CFS - PEM became mandatory, where as under Fukuda it had been optional. Therefore, intentionally or inadvertently, the committee did subgroup. This is the result:
    • Fukuda patients without PEM do not have ME/CFS (SEID).
    • Fukuda patients with PEM are likely to have ME/CFS (SEID). In effect, what they have is what many of us (but not all) would already have understood by ME but with simplified criteria. Note that this does not automatically imply a single disease.
    Obviously we can only speculate about this but do you think it was an intentional act by the committee, to ditch a portion of the original group of patients? Ditch is a harsh word, I know.

    Have the committee done a favour to people without PEM? If they are fortunate, they will be medically reassessed and this may lead to the diagnosis of hitherto missed conditions. If they are unfortunate, they'll be treated to the same contempt that they currently 'enjoy'. Will they end up being stigmatised even by us? (See how easy it is to slip into 'them' and 'us' language? It's a painful thought.)

    The recommendation to make PEM mandatory is what many patients have been asking for. The 2 day CPET already provides evidence for PEM and no doubt biomarkers will follow. ME/CFS (SEID) must surely now be accepted as a serious, life altering / life demolishing disease with a biological basis. Given this and the under-diagnosis that the committee highlighted, increased research activity must follow. Somebody reassure me about that, please!

    What implications might the new clinical criteria have on research if any? Does anyone think this is now the end of the story as far as subgroups within ME/CFS (SEID) are concerned? Does it still make sense to include non PEM Fukuda type patients, who don't have an alternative diagnosis, as a discrete group within research of ME/CFS (SEID)?

     
    melamine, Valentijn and Sasha like this.
  2. anciendaze

    anciendaze Senior Member

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    You have raised a good question. Those boxes on the flowchart saying "consider another diagnosis" are not at all informative, nor is the question of differential diagnosis likely to be resolved without clinical tests for known diseases which have (so far as I've seen) been almost passed over in silence. If you are not advised even to test, and you are not given better diagnostic criteria, it is not at all clear on what basis differential diagnoses can be made. The unstated implication, from my outsider's viewpoint, is that these patients, now said to really have something wrong with them, are not worth the cost/effort of careful diagnosis because all you can do is try to relieve symptoms.
     
  3. Scarecrow

    Scarecrow Revolting Peasant

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    Bumping. Any more takers?
     

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