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PACE trial re-analysis paper (Wilshire et al) is now open access - thanks to MEA!

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 22, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    The PACE trial re-analysis paper (Wilshire et al) is now Open Access - thanks to the MEA!

    Full paper:

    http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724

    Acknowledgements
    This paper represents a collaborative effort between psychology researchers and patients. In addition to those named as authors, several others also contributed important ideas, suggestions and information. This paper could not have been written without their help. We also wish to thank Keith Laws for his helpful comments, and David Tuller and Sam Carter for drawing our attention to some of the issues noted in this paper.

    Open Access publication has been made possible thanks to funding from The ME Association Medical Education Programme.


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. adreno

    adreno PR activist

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    Thanks, this I believe will be really helpful.
     
    Sean, Valentijn, Solstice and 11 others like this.
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It is very pleasing to see both MEA and Taylor and Francis oiling wheels. Taylor and Francis (publishers) and the editorial office of Fatigue were very helpful with the review we published last year. They asked me to give a small commentary on using their open access, because we had had one of the highest numbers of hits online. That also seemed to go down well. I think there is a certain amount of buzz around patients collaborating with researchers on solid scientific issues. It is a million miles away from patronising patient advisory group set ups. This is doing things how they ought to be done and the academic community might do well to wake up to it.
     
  4. UKmum

    UKmum

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    Great work. Really makes it clear what the issues are- I feel I finally understand quite how bad the trial was- shocking in fact. I will be asking my sons therapist what she thinks about it at our next meeting to discuss his planned activity increases! Thank you to all who created it.
     
  5. A.B.

    A.B. Senior Member

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    The snowball grows every day.

    The support of non-patients has indeed been very important.
     
  6. charles shepherd

    charles shepherd Senior Member

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  7. charles shepherd

    charles shepherd Senior Member

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    Now that we have paid for open access to this very important paper we will be sending a copy to Professor Mark Baker at NICE!
     
  8. keenly

    keenly Senior Member

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    Good stuff Dr Charles.
     
  9. Esther12

    Esther12 Senior Member

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    Thanks for this. A shame delays with the journal meant it was not open access when the NYT piece came out... so close!
     
  10. JohnM

    JohnM Senior Member

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    Many thanks!

    In the expectation that the serious flaws with the PACE trial, as highlighted in this paper, will not filter down to the NHS 'coal face' for some time, I will make sure to drop off a copy with the Practice Manager at my local GP surgery, and my local MP. Likewise, I will keep a copies for myself when attending hospital appointments ... all too often do I hear, "You should try CBT and GET ..", or "CBT and GET is all we can offer you ..", and the like.

    They may well choose not to accept this paper and/or decide not to read the paper and/or throw it in a bin, but they'll not be able to deny that they were not given the opportunity to understand how the BPS model of illness and their 'treatments' of choice, are based on flawed 'science'. As stated in the paper -

    CONCLUSIONS: The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.

    I sure hope the academic community do wake up, and sooner rather than later. It does seem that it is full steam ahead for the BPS adherents - given how they are seeking to control the narrative on the treatment of MUS. They need derailing before they do any more damage to far too many patients.

    I can only echo .. many thanks to all involved.

    Wishing you all improved health and happiness.
     
    ladycatlover, Molly98, Laelia and 2 others like this.
  11. dangermouse

    dangermouse Senior Member

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    Heartfelt thanks :)
     
  12. Dolphin

    Dolphin Senior Member

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    Some things never change. Colin Barton posted this on the ME Association Facebook page


     
  13. AndyPR

    AndyPR Senior Member

    Where has he put that on the page Dolphin? I can't see it.
     
  14. user9876

    user9876 Senior Member

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    White's response to the recovery reanalysis paper is worth reading as the arguments and logic are so weak I don't see how anyone who has put the slightest thought into the issues would be impressed. In fact I think it would convince many that the trial is really poor.
     
    ladycatlover, Laelia, Jan and 4 others like this.
  15. Dolphin

    Dolphin Senior Member

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    AndyPR and Cheshire like this.
  16. slysaint

    slysaint Senior Member

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    there's that phrase again:
    "recover from the current episode of CFS after either CBT or GET"..........what does this mean
     
    Laelia, Jan and AndyPR like this.
  17. Dolphin

    Dolphin Senior Member

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    For anyone who doesn't know, Colin helps to run the Sussex & Kent ME/CFS Society. They are a bit like AYME in their views.
     
  18. AndyPR

    AndyPR Senior Member

    Haha, an awesome response to his posting by someone else
    ETA: To be helpful I gave the link to the response to the PACE authors reply. :)
     
    ladycatlover, Laelia, Jan and 4 others like this.
  19. Barry53

    Barry53 Senior Member

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    That statement alone is really a tacit acknowledgemen of defeat. If there was any confidence their purpose would be to show that Wilshire was wrong.
     
    ladycatlover and Laelia like this.
  20. Orla

    Orla Senior Member

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    Thanks to the MEA for doing this. I look forward to reading this.
     

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