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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. Purple

    Purple Bundle of purpliness

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    Thank you. So a medical/scientific journal had a draft editorial which referred to a newspaper article...
     
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  2. biophile

    biophile Places I'd rather be.

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    Just to be clear, here are at least two factual errors published in the recovery paper:

    FAIL. In the general working age population, the median (middle score) is 100 and the 1st quartile (25th percentile) is 90. A threshold of >=85 only excludes about 18% of the general working age population, and 8% of the working age population without long-term health problems, the population which 'recovered' participants should be compared to. White et al appeared to wrongly assume that the mean (average score) was about the same as the median.

    So the stated justification for changing the threshold is based on a falsehood and/or misinterpretation. Unfortunately, those figures are derived from raw data from the UK Data Archive and not published in a paper (however, one can estimate from the histogram in the Bowling paper that about 28% of the general population score 85 or higher). Psychological Medicine were made aware of this error but did not publish the submitted letter with this information, claiming that the same point was already made in one of the other letters to be published, which is clearly false. There was no correction issued either. Another letter made a different point about the threshold, but here is a factual error which they are obliged to investigate and correct.

    FAIL. The PACE Trial recovery thresholds were not 'more conservative' than the Knoop et al paper. Both used mean -1S.D. The threshold for normal physical function was 80 in Knoop et al but only 60 in the PACE Trial. White was a co-author of both papers, which makes the blunder more baffling. Fortunately, the above error is very easy to confirm. I don't know if Psychological Medicine know of this error, but they don't seem interested in corrections anyway.

    PS: PACE referred to Bowling et al for their normative data (general population), which was based on the 1992 ONS Omnibus Survey sample. The mean±S.D. and median(IQR) physical function score for the working age population without chronic illness in this sample is 95.0±10.2 and 100(95-100) points respectively. Presenting 60 as a 'conservative' threshold for complete recovery is scandalous, particularly as it overlapped with trial criteria for 'significant disability' i.e. 65 or less.
     
    Last edited: Apr 14, 2014
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  3. Dolphin

    Dolphin Senior Member

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    Just another quote showing why it is important we should have good data on recovery i.e. to see if it's reasonable for one's position to be "curable" or "incurable":

    PD White:

    http://www.derbymedicalsociety.co.uk/archive/2009-10/DMS minutes 17-11-2009.PDF
     
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  4. biophile

    biophile Places I'd rather be.

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    These new videos from ME Analysis were recently posted on Co-Cure:

    6: ME Recovery Song (cheeky, amusing, catchy, banjo song about 'recovery' in the PACE trial)



    7: How's That Recovery? (a more formal explanation of problems with the 'recovery' criteria)

     
    Last edited: Apr 28, 2014
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  5. Dolphin

    Dolphin Senior Member

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    Here's an extract, for what it's worth, from a blogpost linking to that MEA article on the recovery criteria, "Someone at the M.E. Association said something accurate and wonderful about the PACE trial"

    (This is a woman who is able to walk 5 miles sometimes. She also works part-time from home)

     
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  6. Dolphin

    Dolphin Senior Member

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    Another study showing fatigue can be common in society suggesting population norms could be problematic

    Free full text: http://bmjopen.bmj.com/content/4/6/e005374.full

    Note: I've come across Keith Petrie before and find him quite a psychobabbler so I might not agree with a lot of what is said in this study (haven't read it so far).
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Scanning the forum today i saw the heading and thought if this cbt/get crap worked we would have alot of people discussing how great they feel after being treated etc. if there is any positive personal experiences with it posted then there isnt many.

    Its good they did that study so now we definately know its a crock of s-it.
     
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  8. Dolphin

    Dolphin Senior Member

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    The problem is that they had a "crock-of-s*it" definition of recovery so they're claiming 21%/22% recovery rates. If they'd published what they said they would publish (the recovery criteria in the protocol), everyone could see what you say.
     
    Last edited: Jun 13, 2014
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  9. Dolphin

    Dolphin Senior Member

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  10. alex3619

    alex3619 Senior Member

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    Do we need a thread for stories from people who were in the PACE trial? Then advertise it?
     
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  11. Graham

    Graham Senior Moment

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    That might be a good idea, but we would have to ensure that it was truly open, and not phrased in such a way that only the dissatisfied would get involved. It would also need to be monitored carefully so that anyone posting positive comments was not harassed.
     
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  12. Dolphin

    Dolphin Senior Member

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    http://medicine.stonybrookmedicine.edu/psychiatry/news/friedberg_commentary

    Thread on this short commentary here: http://forums.phoenixrising.me/inde...me-may-present-less-than-meets-the-eye.31868/
     
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  13. alex3619

    alex3619 Senior Member

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    It would have to be a highly moderated thread, constantly monitored. Anything less would be a bad idea.
     
  14. Dolphin

    Dolphin Senior Member

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    I just made this point to somebody who was confused by the recovery criteria. I'm not sure if the observation in the second paragraph was made before but no harm making it again:

     
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  15. Tom Kindlon

    Tom Kindlon Senior Member

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    This is a letter Adrian Baldwin and I just had published in Evidence Based Mental Health.

    http://ebmh.bmj.com/content/early/2014/09/19/eb-2014-101961.extract

    Unfortunately it is not open access

    It is about the recovery definition used in the PACE Trial.

    Friedberg & Adamowicz say that the recovery criteria in the PACE Trial were similar to those used by Deale et al (2001) in an earlier CBT trial, echoing PACE Trial authors claimed. We disagree pointing out how they are different.

    We then also say the use of a threshold of SF-36 PF of 60 or more to define recovery is inappropriate, including by quoting population data.
     
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  16. Dolphin

    Dolphin Senior Member

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    From: Leonard Jason

    See pages 67 to 70 for an article "Beyond Tired: Chronic Fatigue Syndrome remains misunderstood and understudied. Psychologists are among those trying to change that" This article just appeared in the Oct 2014 issue of the American Psychological Association’s publication the Monitor
    http://www.apamonitor-digital.org/apamonitor/201410#pg70
    ---
    Note that cognitive behavioural stress management is not the same as graded activity-oriented CBT.

    Includes the following on the PACE Trial:
    ETA:
    Here's more - what came next:
     
    Last edited: Oct 2, 2014
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  17. Sean

    Sean Senior Member

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  18. Snow Leopard

    Snow Leopard Senior Member

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    :)

    Jason promoting good sense and showing that not all Mental health professionals buy into the hype.
     
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  19. Graham

    Graham Senior Moment

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    It's my belief (based on very little evidence) that possibly the majority of psychiatrists and psychologists do not go along with the Wessely crowd, simply because they are so few in number, and the few that I have come across personally have had a much more open and balanced attitude. I came across an ex-Indian army psychiatrist a few years back, and was a bit apprehensive. Just showed how wrong I was to be prejudiced! He was really good. I have also heard from others in the profession with family members or friends with the illness, who know it is not a psychological illness. The trouble is, of course, that most of the ones we come across are at ME/CFS centres, and are picked or trained in the Wessleyan tradition.
     
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  20. worldbackwards

    worldbackwards I talk because I can

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    Similarly uninformed, but when I ended up in hospital, I was given a 'psychiatric evaluation', which was rather worrying, but the nurse in question was really knowledgeable and intelligent. However, when I was first ill, I saw a psychiatrist who was a right nob (first words - 'I don't believe in ME' - the first time I'd ever heard the term). On the basis of this thoroughly scientific sample, I 'd say it's variable!
     

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