Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Diary-based outcome predictors in a selfmanagement trial in chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 7, 2017.

  1. Dolphin

    Dolphin Senior Member

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    Main findings:

    SM=self-management
     
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  2. RogerBlack

    RogerBlack Senior Member

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    Interesting. We need more of this type of thing.
    I need to dig into it tomorrow to see if they mention PEM duration and factors and percentage 'recovery' and thresholds.
     
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  3. trishrhymes

    trishrhymes Senior Member

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    Has anyone got a link so we can read the whole paper. I confess I don't really understand the research from this summary. When I see a statement like

    'clinically significant fatigue change at 12-month follow-up was predicted by these diary variables (assessed at intervention termination): positive changes in enjoyment (r = .50; p = .02), less activity difficulty (r = .53; p = .02)'

    it sounds to me like a statement of the bleedin' obvious - if you're less fatigued, you're more likely to enjoy things, and if you're finding activity less difficult isn't that just another way of expressing the fact that you're less fatigued...

    I wonder what fatigue measure they used. If it was Chalder Fatigue Scale, the whole thing is a non starter, since it doesn't measure degree of fatigue.

    And were any objective measures used - actometers, heart rate monitors, step tests, walking tests, ...

    And what diagnostic criteria did they use for recruitment to the trial? Did they record episodes of PEM, etc etc. And what was the sample size? The p values quoted are not strongly significant, so if it's a small sample with no objective measures and poor quality questionnaire measures, it's a non starter as far as I'm concerned.
     
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  4. AndyPR

    AndyPR Senior Member

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  5. Woolie

    Woolie Senior Member

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    Yea, this smells of the usual confusion of causation and correlation.

    I bet these authors never go to hospital - admission into a hospital is a major predictor of imminent death!
     
  6. trishrhymes

    trishrhymes Senior Member

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    Thanks for the link, Andy.

    It's very confusing - they say it's a study of severely affected patients, then talk about 'pacing at work', and walking as a helpful form of exercise. Surely if a person is severely affected they can't possibly be working, and walking is likely to be severely curtailed.

    And why on earth no objective tests? I see it's a New York based study. I would have hoped for better.
     

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