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Stop Exercising for Chronic Fatigue Syndrome Symptoms

Discussion in 'General ME/CFS news' started by John Mac, Jun 5, 2018.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Inara, Simone, Dolphin and 6 others like this.
  2. Webdog

    Webdog Senior Member (Voting Rights)

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    Good article, but has some issues. It's definitely improved/been edited since I first read it a few days ago.
    • First off, the use of the term "Chronic Fatigue Syndrome" and not ME/CFS.
    • The "What Is Chronic Fatigue Syndrome" section doesn't say what CFS is.
    • States the CDC dropped GET "this summer", which I guess is technically true as it's not yet summer 2018. But people reading might not realize it was summer 2017.
    • Parts are awkwardly phrased with odd word choice, likely written by someone who doesn't have english as their primary language.
    • Diagnostic criteria section rewritten since I read it a few days ago. It's better, but still says "Chronic fatigue syndrome symptoms need to come and go over at least six months and not be explained by another problem; you also need to have four or more symptoms of the condition.", implying Fukuda.
     
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  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Yeah, it's not too bad, although it suggests most recover at the end. I think it should qualify that younger people have a much better chance of recovery than adults.
     
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I'd like to know where those recovery stats come from though.

    it also doesn't mention that some (many?) of those young people who do recover may relapse or develop it again later in life. I don't know if we have any stats on that either.
     
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  5. Webdog

    Webdog Senior Member (Voting Rights)

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    Yes, I thought about commenting on that, but the article doesn't technically get it wrong.

    The 88% recovered by 12 years only refers to patients who already consider themselves recovered, and not ME patients in general. So among young people who consider themselves recovered, 88% did so within 12 years. As has been mentioned in other threads, patients can consider themselves "recovered", when in fact they still are well below healthy functioning. And as @Invisible Woman mentions, there is no followup study (that I'm aware of) on relapse.

    A casual reader might conclude that 88% of young CFS patients recover within 12 years. I know I did the first time I heard about the study.
     
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I don't think the bold bit is correct:

    https://iacfsme.org/portals/0/pdf/Fall2011-AbstractsOttawa-112-200.pdf

     
    Last edited: Jun 6, 2018
    Inara and Invisible Woman like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I think this is an interesting study showing how many people have long-term effects even if they don't consider themselves having CFS any more.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/




    The sample was comprised of individuals (n = 25) who, approximately 25 years ago, were adolescents diagnosed with a CFS-like illness.
     
  8. Webdog

    Webdog Senior Member (Voting Rights)

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    The article quote below seems to say that the study was done only on those who report having "recovered". So, it would be 60% "recovered" by 5 years, 88% by 12 years, and should be 100% by 15 years.

    Or am I misreading it still? I'm definitely not an expert on this stuff.

    https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full
     
    Last edited: Jun 6, 2018
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Having re-read it, I have changed my position and think that @Webdog's interpretation may be correct.
     
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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    is this widely read?
     
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  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I see Katherine Rowe co-authored the 2017 paper. As she did the original study, she would know what it found so I believe @Webdog's interpretation now.
     

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