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The PACE trial: where "recovery" doesn't mean getting your health back

Discussion in 'General ME/CFS News' started by Simon, Dec 14, 2016.

  1. Simon

    Simon

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    The PACE trial: Where “recovery” doesn’t mean getting your health back | #MEAction

    Meat of it below:

    Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of PACE
    People with ME/CFS dream of recovery — of getting their health and lives back. So the results published by the PACE trial, showing that 22% of participants recovered after just 12 months of CBT or graded exercise, looked like good news for patients. For those in the control group with no therapy, only 7% recovered.

    But alas, “recovery”, as defined by PACE, is not what it seems. It’s not even what the authors originally said it would be in the study protocol. And a new paper (of which I’m a co-author) concludes that the changes made to the definition of recovery were not justified and led to the publication of recovery rates that were inflated and misleading, to patients and clinicians alike.

    In fact, reanalysis according to the original, protocol-specified definition of recovery shows that CBT and graded-exercise recovery rates were not significantly better than having no therapy at all.

    Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial

    The new paper is by psychology researcher Dr Carolyn Wilshire, patient-researchers Tom Kindlon and Alem Matthees, and me. It lays bare how the PACE authors watered down the recovery criteria they had specified before the trial began; and, using data recently released after a Freedom of Information (FOI) battle by Alem Matthees, presents analyses to reveal how those changes artificially boosted recovery rates.

    [​IMG]


    ...


    To recap, PACE relaxed the fatigue and physical function recovery thresholds so far that patients could (and some did) count as recovered at the same time as being fatigued and disabled enough to join the trial. They counted patients as recovered who said they weren’t “very much better”, but merely “much better”, and even if clinical staff judged them to still meet Oxford criteria for CFS. This is not recovery.


    Overall recovery rates
    Not surprisingly, the protocol-specified criteria give much lower recovery rates than the ones that PACE published. Recovery rates fall from 22% to 7% for CBT, from 22% to 4% for graded exercise, and from 7% to 3% for no therapy.

    Not only that, but the recovery rates for CBT and graded exercise are no longer statistically significantly higher than those for no therapy at all: that is, the trial provides no evidence that patients can recover as a result of CBT and graded exercise.

    The changes to PACE’s recovery measures resulted in inflated and misleading “recovery” rates that have nothing to do with patients’ dreams of getting their health back. Patients and clinicians need to have accurate information about the chances of recovery as it’s understood by people in the real world. Our paper reveals that PACE’s own data show that CBT and GET have no effect upon the chances of recovery.

    Read the http://www.meaction.net/2016/12/14/...ecovery-doesnt-mean-getting-your-health-back/

    PR thread on the paper itself here A critical commentary and preliminary re-analysis of the PACE trial
     
    Last edited: Dec 15, 2016
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  2. Simon

    Simon

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  3. daisybell

    daisybell Senior Member

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    Nice Christmas present! Huge thanks to all.
     
  4. Braveheart

    Braveheart

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    Do people recover their health with this illness? I am beginning to feel more miserable/depressed by the minute.
     
  5. 2kidswithME

    2kidswithME

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    Dr David Bell in the USA, who has followed the illness for some 30 years, maintains that about 5% fully recover. A lot of people do improve, and/or perhaps are able to manage it so as to have some 'life'. It's so unpredictable, almost certainly there are different variations which might explain outcomes, once we understand more. Hence the push for biomedical research.
     
    MEMum, actup, Countrygirl and 2 others like this.
  6. Braveheart

    Braveheart

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    Thanks x
     
    Countrygirl likes this.
  7. Apple

    Apple Senior Member

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    Please don't give up hope @Braveheart . I know of people who have got better and/or at least reached a perfectly lovely quality of life.
     
    Braveheart and Countrygirl like this.
  8. Solstice

    Solstice Senior Member

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    If that's not motivation enough, just take a look at the incredible minds working on the disease now and their statements about wanting to cure and their confidence that they can in the foreseeable future. Ron Davis' holiday-message especially got my spirits up.
     
    mango, MEMum, Braveheart and 6 others like this.

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