Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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White et al: Comment on: ‘Reports of recovery in chronic fatigue syndrome may present less than meet

Discussion in 'General ME/CFS News' started by Esther12, Jan 21, 2016.

  1. Esther12

    Esther12 Senior Member

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    Text in image is here, but a pain to read:

    http://ebmh.bmj.com/content/19/1/32.short?rss=1
     
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  2. Esther12

    Esther12 Senior Member

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    How is that an error of fact or interpretation?

    White et al decided to deviate from their protocol and class those patients who had actively chosen not to rate themselves as being 'very much better', but just 'much better' as recovered. That's not patients rating themselves as recovered.

    "How's your CFS doing post-CBT?" "I'm afraid that I'm not very much better, but merely recovered."


    They also omitted to mention that you'd abandoned PACE's protocol recovery criteria by lowering the SF36-PF cut-off for recovery from 85 to 60, using the false justification "that approximately half the general working age population" had an SF36-PF score of under 85, when the data cited showed that in fact it was only 18%. It's very difficult to cover all of the problems with PACE's claims about recovery in detail. Pointing out omissions is not correcting errors of fact or interpretation.

    How many of these comorbid conditions are diagnosed using criteria which overlap with CFS symptoms? A diagnosis of CFS also requires that many other health conditions are first excluded. White et al. have done nothing to show that concern about co-morbid conditions should do anything to change to definition of recovery from a 'full return to health'.

    Does that count as an error of fact or interpretation? If so, it's a pretty trivial one. Ref 6, the Flo paper, seemed pretty rough when it was first released, with them describing their own criteria differently throughout the paper. It did say it was an uncorrected proof, and I've not read it to see if it's been corrected since. Their criteria for recovery was again indefensibly lax though.

    Not if it's based on subjective self-report measures in an unblinded trial using an absurdly lax post-hoc criteria for recovery. It's worthless and misleading news.

    Bullshit.

    If they think that the relatively small 22% recovery rate should spur people on to enhance therapies and develop new and better treatments, then surely if the 22% rate is an exaggeration, this exaggeration will have reduced people's commitment to research and develop new and better treatments?

    They can suggest it all they want, anyone who takes the time to look at the specifics of their claims on recovery will see how seriously they have spun their results.
     
    Last edited: Jan 21, 2016
  3. Gijs

    Gijs Senior Member

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  4. jimells

    jimells Senior Member

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    They should hope no one actually notices this criteria. A participant who becomes housebound, for just one example, would be deemed ineligible for entry to the trial, and therefore could be counted as meeting this criteria for "recovery". :bang-head:
     
  5. snowathlete

    snowathlete

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    More spin. The audacity is quite astonishing but I guess they are hoping no one actually looks to close and just trusts their word for it all.
     
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  6. Esther12

    Esther12 Senior Member

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    I'm assuming that wouldn't count... but I really don't know. The Oxford criteria requires that fatigue is a patient's primary symptom, so therefore, if treatment led to pain becoming more important than fatigue, they could count as no longer fulfilling Oxford. I had assumed that this would not count, but it looked from their recovery paper as if patients ended up not fulfilling Oxford, but fulfilling more demanding criteria. Until we get access to their data it's hard to say what was happening.
     
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  7. barbc56

    barbc56 Senior Member

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    I'll second that!
    This sounds rather absurd.

    If they found patients without a comorbid condition, I would estimate that one, maybe two persons in the entire UK might be helped. But I'm guessing here. It might be less! :woot:

    Either way that doesn't seem to justify this as a therapy.

    You do have to consider confounding factors but I don't think in the way it's being used here. While distinguishing them is important, at what point do the symptoms of comorbid conditions become an actual part of mecfs? Diagnostic criteria for exclusion, and we do have a few, but if the reality is that most have them then you're still back to the fact it doesn't help. I know this has to be an issue in a lot of studies and probably has probably been asked and answered but I've drawn a blankl.

    Edit. I think I've confused comorbid condition and cofounding factors but I'll leave this part in case anyone wants to comment
    .:bang-head:

    I'm not sure I'm making sense here. If anyone can figure out what I'm trying to say, enlighten me. Maybe direct me to a thread? If you can't just ignore this and I will go back to Esther's delightful default comment:

    Bullshit!

    Barb
    Edit Deleted a bunch of text as I think this has probably been addressed before and could be a separate thread. Now I'm confused about which words to use to search. But I'll keep trying!
     
    Last edited: Jan 21, 2016
  8. Snow Leopard

    Snow Leopard Hibernating

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    One day the wheels are going to fall off due to excessive spin!
     
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  9. barbc56

    barbc56 Senior Member

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    :lol:

    Great analogy! I'll probably steal this!

    Barb
     
    Last edited: Jan 22, 2016

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