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Why the 2015 IOM "ME/CFS" Report Should Be Scrapped, In Toto, as Unfit for Purpose

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Feb 16, 2015.

  1. Ember

    Ember Senior Member

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    https://www.facebook.com/jerrold.spinhirne?pnref=story

    Why the 2015 IOM "ME/CFS" Report Should Be Scrapped, In Toto, as Unfit for Purpose
    By Jerrold Spinhirne
    More...
     
    Last edited: Feb 16, 2015
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  2. Ember

    Ember Senior Member

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    I couldn't find either a thread or the skill needed to respond to your question of me (posted on another thread) yesterday @halcyon. You asked me which part of the ICC separates ME from CFS.

    That separation is most clearly articulated in the 2012 Primer. The ME Primer recommends that patients who satisfy the ICC should be removed from the broader category of CFS: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
     
  3. halcyon

    halcyon Senior Member

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    Gotcha, thanks Ember. I thought you were talking about the actual ICC document which doesn't seem to make any such distinction as far as I recall.
     
  4. Ember

    Ember Senior Member

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    The ICC document also separates ME from CFS. This statement, for example, is from its Conclusions: “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”
     
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  5. halcyon

    halcyon Senior Member

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    Cool, missed that before I guess, thanks.
     
  6. Iquitos

    Iquitos Senior Member

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    Colorado
    FRUIT OF A POISONED TREE, indeed.

    "The positive aspects of the report will soon be overlooked and forgotten. The unwarranted conclusions, errors, and omissions of the report will greatly harm ME patients in the US and worldwide, and confound research on the disease for decades to come.

    The IOM report is an abject failure, in toto, unfit for purpose for these reasons:

    1. The report is seeking to create yet another overly inclusive diagnostic category ("SEID") that will include both patients with and without ME. Although the new diagnostic category is less inclusive than CFS and the report seeks to create only diagnostic criteria, future research on mixed groups of "SEID" subjects will be confounded, diluted, and inconsistent for decades to come.

    2. The report fails to acknowledge that ME is a distinct neurological disease requiring its own case definition and diagnostic guidelines. Fortunately, we already have an excellent published case definition, the 2011 ME-ICC, and excellent diagnostic and treatment guidelines, the 2012 IC Primer.

    The report will serve to prevent implementation of the ME-ICC and distribution of the IC Primer. Doctors need the IC Primer so they can make the differential diagnosis of ME now. Instead, the report authors absurdly call for creation of yet another new diagnostic manual based on their botched clinical case definition. The report makes no mention of the 2012 IC Primer whatsoever...." (my bolding)

    This new name disappears ME just as the CDC name change did back in the early 90s. I'll bet 'ol Bill Reeves is dancing and celebrating in hell right now. Him and Steven Straus.
     
  7. Ember

    Ember Senior Member

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    The ICC separates ME from CFS. Now all the king's horses and all the king's men are putting Humpty Dumpty back together again.
     
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