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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Assessment of recovery status in chronic fatigue syndrome using normative data (incl. on PACE Trial)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Oct 22, 2014.

  1. Dolphin

    Dolphin Senior Member

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    http://link.springer.com/article/10.1007/s11136-014-0819-0

     
    Last edited: Oct 22, 2014
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  2. Dolphin

    Dolphin Senior Member

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    barbc56 likes this.
  3. cman89

    cman89 Senior Member

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    what is the significance of this in your opinion? I'm not getting it
     
  4. Dolphin

    Dolphin Senior Member

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    Some recovery rate claims such as in the PACE Trial may not be justified because they used thresholds for recovery that weren't strict enough.
     
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  5. cman89

    cman89 Senior Member

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    I see. that makes sense now. And of course the term "recovery" is so loaded with subjectivity that it can be imossible to quantify
     
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  6. Valentijn

    Valentijn WE ARE KINA

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    Basically it's a statistics issue. In PACE they declared that one standard deviation below the mean for SF-36 questionnaire Physical Function (PF) subscale is sufficient to show recovery from disability. But SF-36 PF doesn't have a normal distribution, which anyone would learn in Statistics 101 is required for a standard deviation to be determinable and/or meaningful.

    The result is that in the PACE study they declared a score of 60 means a patient is "recovered", even though something like 95% of a healthy working-age population scores 100 (maximum score) on the SF-36 PF. Hence by badly mangling statistics, they made it look like a score of 60 is normal, even though people actually have to be pretty ill or very old to score that low.

    To make things even more absurd, CF patients were required to have a score of 65 or lower on the SF-36 PF subscale to be eligible to participate in the trial. Hence someone could be disabled enough to join the trial with a score of 65, become MORE disabled during the trial and have their score drop to 60, yet still meet the criteria for recovery.

    There are many other outrageous issues with PACE, but this particular one is 100% governed by the rules of statistics, and the PACE trial authors made a huge and clear-cut violation of those rules. Hence it's a very useful angle for pointing out how badly flawed the trial was.
     
    Last edited: Oct 22, 2014
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  7. Esther12

    Esther12

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    Researchers who want to claim their treatment leads to lots of people recovering can use very low standards for what 'recovery' means, and this should not be seen as acceptable. Good to see PACE used as an example of this.
     
  8. A.B.

    A.B. Senior Member

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    The significance is that the claims of CBT and GET leading to recovery in CFS are bogus, and the researchers behind it have no credibility. Either they are intentionally trying to deceive the public, or they are shockingly incompetent. I think the first option is more likely as there are too many problems and odd things about the PACE trial for this to be simple mistakes (in my opinion at least).
     
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  9. Ren

    Ren .

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    Adamowicz et al. (as the saying goes) kickin' ass and takin' names.
     
  10. Kati

    Kati Patient in training

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    Thanks for the clear explanations, @Valentijn , it really helps.
     
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  11. Esther12

    Esther12

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    I don't think that can be right. I've seen it stated that over 50% of the working age population had a score of 100 in the data-set cited by PACE, but I wouldn't have thought it would be much over 60%? It was still ridiculous for them to claim that a score of 60 was an acceptable threshold for recovery and that appx half of the working age population scored under 85.
     
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  12. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    might the difference be "healthy working age" versus "working age" or "healthy"? Pretty sure if you restrict it with both "healthy" and "working age", it's unusual to score under 95 and highly unusual to score under 90 (making a score even of 85 a definitely in the lowest quadrant and possibly an outlier), though I do not recall the exact figures.

    This is the data set [edit: healthy working age] which makes sense to compare to an average outpatient trial for ME or CFS/ME patients in general and the PACE trial in particular (as trials typically don't recruit (edit:) older patients (/edit), unless they are specifically studying geriatric patients... and the mean age in PACE was 40).

    Some of the data sets cited by PACE were not how they were described in the papers (not the same age range, and/or not the same health status), but I do not now recall the details.
     
    Last edited: Oct 22, 2014
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  13. Esther12

    Esther12

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    Sorry - you're right, I'd totally missed the 'healthy'! I don't know about that data, but those figures could well be right.
     
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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I probably misremembered the typical upper limit for trial recruitment, though.
     
  15. Sea

    Sea Senior Member

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    Not related to CFS, but still on the topic of conclusions of papers being different when reassessed with different statistical analysis or outcomes:

    http://www.rheumatologynetwork.com/...3F-ACC5-F644DF548DC7&rememberme=1&ts=16092014

     
  16. barbc56

    barbc56 Senior Member

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    That's a good thing and certainly refreshing to see.

    There's a related thread on PR discussing an article written by Ioannidis where he points out this same issue with statistics.

    http://forums.phoenixrising.me/inde...published-research-true-john-ioannidis.33320/

    Barb
     
  17. barbc56

    barbc56 Senior Member

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    I believe these researchers really believe what they are saying. In some ways, I find this more frightening than the first scenario.

    Barb
     
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  18. Valentijn

    Valentijn WE ARE KINA

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    I think they believe what they're saying AND are aware that their data doesn't support it. Hence they believe the data is "wrong" and they find ways to present it to make it comply with with their warped perception of reality.
     
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  19. A.B.

    A.B. Senior Member

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    Fake it till you make it?
     
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  20. chipmunk1

    chipmunk1 Senior Member

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    Then the data will be used by the B*haviourists as solid evidence that can be used to lock someone up and torture them for their own good.
     

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