Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Solve ME/CFS Initiative webinar with Dr Unger

Discussion in 'General ME/CFS News' started by Bob, Sep 9, 2016.

  1. Bob

    Bob

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    Thursday 8th September 2016

     
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  2. Bob

    Bob

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  3. AndyPR

    AndyPR Senior Member

    I had considered creating a transcript of this one but considering the poor reception that those who listened to it in real time gave it I'm not sure it's worth it. If there is enough interest though then I'll do it.
     
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  4. mango

    mango Senior Member

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    Transcripts are always super valuable and immensely appreciated! :) :thumbsup:
     
  5. Bob

    Bob

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    Have I missed a thread on this when it was live?
     
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Bob likes this.
  7. Bob

    Bob

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    Just listened to this. Nothing much of interest. Nothing new.
    Some basic publications in the pipeline but nothing soon.

    The study's methodology will be published first and has been submitted but it will be a few months before publication.

    A couple of promising snippets...

    @ 47:00
    Unger says CBT is not a treatment; It does not change the illness.
    May help some people get some control over their illness.

    @ 49:00
    Unger says fatigue might not be best measure of illness; she says what changes is function, not fatigue.
    She says when patients improve they will work up to their previous level of fatigue.
    (i.e. she means that patients can manage their fatigue levels by controlling their levels of activity.)
    So function is a better measure of illness.

    Nothing spectacular but I think the above snippets indicate that there is at least some understanding of the illness.
     
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  8. AndyPR

    AndyPR Senior Member

    Ugh, I'm still working on the transcript of this, for those who still might have some interest. Fingers crossed I might have it done tomorrow, if I don't it'll be another week or so as we are going away. Sorry if there is anybody waiting on it.
     
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  9. mango

    mango Senior Member

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    No worries! Take your time :) I don't mind waiting, it's honestly no problem at all :)
     
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  10. Kharren

    Kharren Hopeful opptomist

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    Hermosa Beach Calfornia
    Interesting....I do like the idea of function vs. fatigue but my functional ability is directly tied to my "fatigue" level. It seems fatigue leads and functional ability follows.
     

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