Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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NIH GARD website on Chronic Fatigue Syndrome

Discussion in 'General ME/CFS Discussion' started by halcyon, Aug 17, 2016.

  1. halcyon

    halcyon Senior Member

    I don't see this site mentioned often, but the NIH Genetic and Rare Diseases Information Center site on CFS is pretty terrible, notably the treatment section.
    You can leave feedback using the link at the bottom of the page that says 'Suggest an Update'. I told them they should probably update this page to reflect the AHRQ addendum findings regarding the poor quality of the evidence for CBT/GET.
    NL93, Mary, mango and 12 others like this.
  2. TiredSam

    TiredSam The wise nematode hibernates

    Tired of hearing this nonsense. Prolonged lack of exercise is the main thing that has led to an improvement for me, and I would encourage everyone to try it.
    halcyon, NL93, belize44 and 9 others like this.
  3. NL93

    NL93 Senior Member

    The Netherlands
    So, Patients should become more active, but they should not overexert themselves. Do they not realise that people with this illness often do just about what their bodies are capable of doing? Not way too little (it's human nature to do things) and not too much (it's often painfully clear when something is too much)

    And, i have a heart rate of 140 beats per minute when i am just standing in the kitchen. Sitting up my heart rate i usually about 100. I am limiting the standing up part to avoid crashes.
    So maybe, just maybe, i can't do 30 minutes of exercise without overexerting myself. :rolleyes:
    Mary, belize44, TiredSam and 4 others like this.
  4. medfeb

    medfeb Senior Member

    belize44 and Sean like this.

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