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Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

Discussion in 'General ME/CFS News' started by Sasha, Mar 11, 2016.

  1. Yogi

    Yogi Senior Member

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    Thanks for your response.

    I recall nearly all Nath's slides and own references to the full terminology (not acronyms) were to Myalgic Encephalomyopathy. The references Nath made to Myalgic Encephalomyelitis were when referring to the IOM report. I therefore do not understand why given the NIH itself refer to Myalgic Encephalomyelitis Nath has referred to is as Myalgic Encephalomyopathy.

    This confusion over terminology and names and classifications has caused huge amounts of problems with certain UK doctors resulting in the PACE trial. Also some skeptical doctors or bodies could then claim that this study does not really apply to those with Myalgic Encephalomyelitis/Chronic Fatigue Syndome.

    You are right there is alot of history and also in the context of social security, insurance etc these small technicalities can and are used to exploit the situation.

    Therefore it would be important and consistent to use the term Myalgic Encephalomyelitis (given it is the name used since the 1950s and in the ICD) to avoid even any of these problems and concerns and perceptions from the patient community would you not agree?

    As said before I am cautiously optimistic with this study.

    I agree Hooper also discusses the NIH and SEID issue here but that is presumably because NIH commissioned the IOM report and Nath is also a NIH employee and NIH ME/CFS representative.
     
    Last edited: May 4, 2016
  2. LiveAgain

    LiveAgain Senior Member

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    Fukuda and Oxford CFS aren't MUS either, he made that leap ..so I'm not sure of your point. And I doubt handing him or any psychobabbler a copy of the CCC would make any difference. I don't think they're easily converted. But thank you for understanding my concern.
     
  3. viggster

    viggster Senior Member

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    You said NIH would be studying the same patients referenced in the review article, and I was pointing out that NIH will be studying a much more strictly-defined group.

    As far as "not easily converted," I have no idea - but all the patients they'll be seeing will meet CCC.
     
    ukxmrv likes this.
  4. viggster

    viggster Senior Member

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    All of the official NIH communications use "myalgic encephalomyelitis/chronic fatigue syndrome." That's what's on the website, grant announcements, etc. A webinar heard by a few hundred or thousand people does not mean there has been a name change.
     
    Last edited: May 4, 2016
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  5. LiveAgain

    LiveAgain Senior Member

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    That's not what I'm saying. I'm saying Hallett compares "CFS" to the psychosomatic conditions he studies, therefore I'm concerned he's biased - like Walitt. How do we know which patients he's referring to in the article? He says "CFS" and I doubt he sees a distinction between M.E. or CCC CFS or Fukuda CFS etc. My original point was just a concern over psychobabble and bias with the FMD doctors. Either you don't understand what I'm saying or you don't share my worry - which is fine.

    Edited for clarity (because I even confused myself!) and politeness.
     
    Last edited: May 4, 2016
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  6. viggster

    viggster Senior Member

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    OK. We don't even know if he's still involved since they dropped the FMD controls.
     
    LiveAgain likes this.
  7. LiveAgain

    LiveAgain Senior Member

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    Yes! I was hoping with the FMD group gone, the related doctors would go too. No clue what, if any role they play now.
     
    Valentijn likes this.
  8. Kati

    Kati Patient in training

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    This thread has been going on for a while. There comes a time when I need to let it go and stop watching people fighting each others to the bones. So, by all means keep on going, (don't kill each other) but I am done with this thread for the time being. :rolleyes:

    Wake me up when it's published.
     
    Snowdrop, RL_sparky, Bob and 3 others like this.
  9. John Mac

    John Mac Senior Member

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    Liverpool UK
  10. duncan

    duncan Senior Member

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    Little in the way of surprise. Some Neville Chamberlain-like sentiment: Let's not rock the boat, boys; and, They can't all be that bad; and, Let's give them the benefit of the doubt.

    I thought there was some good stuff in his cheerleading considering all we have to do is look across the Atlantic and see it's Dunkirk all over again.

    BTW, How does one open a EURASMUS franchise in the US? Is that a thing yet?
     
    Last edited: May 7, 2016
    halcyon likes this.

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