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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Does It Matter What You Call It? Lay Beliefs for Overcoming CFS, ME, and PVFS

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 19, 2017 at 5:31 PM.

  1. HowToEscape?

    HowToEscape? Senior Member

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    Change food intake to near zero and 100% of subjects lose weight. Such Trials have happened, though those might be better described as tribulations.
     
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  2. RogerBlack

    RogerBlack Senior Member

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    I suspect a very small fraction will ever potentially see an immunologist before diagnosis.

    My understanding is that IgA deficiency is not usual amongst patients with CFS.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC120010/ (a 2002 review)
    Having an 'unusual' diagnosis may not actually help at all.

    If you are seeking help from whatever source, on the basis of an illness, and your presentation is atypical, because you 'really' have CFS, and your diagnostic label is a symptom of that I'm unsure how it helps.
    Sure - in the case where the diagnosing physician or practice knows your actual condition and what would help or hurt - great.
    But that can happen with CFS too.
     
  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    This happened to me in hospital here in Australia maybe five years ago. The system here did not allow an ME diagnosis. To be fair I have never been formally given an ME diagnosis, I was diagnosed CFS three times starting with Holmes criteria, but I fit the CCC and ICC, though due to not being acute onset I do not fit Ramsay's definition.
     
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  4. JaimeS

    JaimeS Senior Member

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    Mid-Ohio Valley, United States
    It's pretty common for us to have low IgA, or low IgG subclasses... often with elevated IgE or even (more rarely) elevated IgM.

    I'm sorry -- maybe it's brain fog, but I can't parse this. :(
     
    MEMum likes this.
  5. NelliePledge

    NelliePledge Senior Member

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    problem is people not being able to reduce/maintain reduction due to stuff like problems with leptin, ghrelin etc which isnt a matter of willpower or psychology
     
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  6. RogerBlack

    RogerBlack Senior Member

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    Well. I managed to lose weight, and then I put it back on due to my CFS as I went through a bad patch, when my dietary choices consisted of a) choosing food, or b) large block of cheese.

    Willpower matters lots, especially for us.
     
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