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JAMA article: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Discussion in 'Institute of Medicine (IOM) Government Contract' started by CFS_for_19_years, Mar 17, 2015.

  1. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
    An IOM Report on Redefining an Illness
    Ellen Wright Clayton, MD, JD
    Viewpoint March 17, 2015


    http://jama.jamanetwork.com/article.aspx?articleID=2118591
    (Journal of the American Medical Association)




    There are many good paragraphs in this article. I'd copy and paste the whole thing if it weren't for copyright issues. :(
     
    Last edited: Mar 18, 2015
    ahimsa, catly, Butydoc and 12 others like this.
  2. Ember

    Ember Senior Member

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    Dr. Clayton doesn't mention that the Committee was under contract to “conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients:”
    Do all these criteria represent “earlier variants of ME/CFS?”
     
    Last edited: Mar 18, 2015
  3. oceiv

    oceiv Senior Member

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    I was just about to post this article. IMO, this is an A-rated article. The last two paragraphs call for increased funding and greatly increased research. :thumbsup: Thanks, @CFS_for_19_years

    Give this article traffic and help bump it up in your favorite search engine rankings by searching for it by title in your favorite search engine.

    Direct link:

    http://jama.jamanetwork.com/article.aspx?articleID=2118591



    Search for this article by title in your preferred search engine:

    Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    (It's now the third result in a Google search)



    Share on Social Media (Twitter, Facebook, Google, Reddit):

    If you want a shortened link, here's one I just created (just copy and paste): http://bit.ly/1FClpTj

    Possible hashtags: #MoreFundingNow #mecfs (just copy and paste)



    Why it's so good:

    It strongly calls for doctors to treat ME/CFS/SEID patients better, diagnose them earlier. It decries the lack of funding for our illness and calls for more funding and research. It emphasizes the seriousness of our disease.



    @Sasha @SOC @Soundthealarm21 (thought you might be interested)
     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    The first paragraph is very good. It is amazing to me that this was published in the Journal of the American Medical Association. Maybe the New England Journal of Medicine will mention this...
     
  5. Ember

    Ember Senior Member

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    Dr. Bateman: “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria.”

    Dr. Clayton: “The new name, which should be accompanied by a new International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) code (sic), also distinguishes this definition from previous ones. Thus, patients who meet these new criteria should be diagnosed with systemic exertion intolerance disease even if they also meet criteria for earlier variants of ME/CFS.”

    These statements from the IOM Committee and its members need to be sorted out through the ICD-10-CM.
     
  6. SOC

    SOC

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    Thanks, @oceiv! This kind of post gives PWME with limited ability to search out and read all the available articles (and that's a lot of us for various reasons) opportunities to participate in some constructive advocacy by supporting good articles. The amount of detail you gave -- how to support it, where it is, background info, and simple assessment is extremely helpful.

    Three thumbs up to oceiv! :thumbsup::thumbsup::thumbsup:
     
    catly, oceiv, melamine and 3 others like this.
  7. halcyon

    halcyon Senior Member

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    The recommendations on the new ICD-10 code are so confusing to me. In the ICD-10-CM, ME and CFS are two distinct diseases, at two different codes, in two different sections, that explicitly exclude each other.

    What section do they propose putting SEID in? As they didn't seem to be very impressed with the ME name or ICC definition, I'm guessing they wouldn't put it in G (diseases of the nervous system) with ME. I think the only other place you could put SEID would be R (symptoms, signs, and abnormal clinical and laboratory findings) with CFS.

    The statement from Dr. Bateman further confuses me. So ME is a distinct disease from CFS/SEID? Why does the report talk about them as though they were the same thing? Why not just rename R53.82 from CFS to SEID then? What disease is the report talking about? Are they really two different diseases?

    It's disappointing because they really could have cleaned house here. Pick up after the mistakes of the past. If you're going to trash CFS, go all the way. Delete R53.82 from the ICD. The only reason it's there is because the CDC didn't recognize Tahoe as ME right? If you really want a new name, just add it to the index, pointing to G93.3. Done and done. The disease of 1000 names becomes the disease of 1001 names, but at least we all know, from a technical standpoint, that we're talking about the same disease.

    The ICD tracks diseases, not definitions. You can define a disease any way you wish, but that doesn't mean that each definition should get its own code in the ICD.
     
    CFS_for_19_years likes this.
  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @halcyon, my thoughts exactly, although I've got too much brain fog to put it all into words as you did! My other thought was, am I now supposed to insist that my doctor place another diagnosis in my chart (SEID along with it's new code, whenever it comes out), in addition to the CFS diagnosis and code that are already there? The article makes it seem so.
     

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