Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

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.

  1. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    432
    Likes:
    543
    Change food intake to near zero and 100% of subjects lose weight. Such Trials have happened, though those might be better described as tribulations.
     
    IreneF likes this.
  2. RogerBlack

    RogerBlack Senior Member

    Messages:
    857
    Likes:
    2,781
    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

    Messages:
    12,386
    Likes:
    34,650
    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.
     
    JaimeS, Webdog and RogerBlack like this.
  4. JaimeS

    JaimeS Senior Member

    Messages:
    3,159
    Likes:
    11,588
    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 plodder

    Messages:
    675
    Likes:
    3,147
    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
     
    MEMum and HowToEscape? like this.
  6. RogerBlack

    RogerBlack Senior Member

    Messages:
    857
    Likes:
    2,781
    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.
     
    MEMum and HowToEscape? like this.

See more popular forum discussions.

Share This Page