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PACE trial commentaries in the Journal of Health Psychology to be made open access

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 28, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    PACE trial commentaries in the Journal of Health Psychology to be made open access - thanks to the MEA!

    Following an exchange of correspondence with David Marks, editor of the Journal of Health Psychology, it has been agreed that ALL of the JHP commentaries on the PACE trial will be made Open Access at no charge to the authors

    Correspondence below

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    March 28th 2017

    Dear Charles,
    Thank you for your email and your helpful suggestion.

    I am pleased to inform you that all PACE Trial Commentary papers will be on Open Access at no charge to the authors.

    This generous and insightful decision on the part of SAGE Publications will greatly facilitate the open discussion and debate of the PACE Trial that we are conducting in JHP.
    Please kindly inform interested parties in your network.

    With best wishes,

    David Marks

    David F Marks PhD
    Editor
    Journal of Health Psychology
    Health Psychology Open

    March 23rd 2017

    Dear David
    As the JHP PACE trial commentaries are now starting to appear on-line there is, not surprisingly, a great deal of interest from people with ME/CFS in seeing what the commentators have to say

    Unfortunately, as the full content is not open access, all people can read are the 100 word abstracts

    I'm sure we both agree that the numerous controversies surrounding the PACE trial are a very important issue affecting people with ME/CFS, clinicians and researchers, and that it would be really helpful if there could be open access to the complete commentaries

    The MEA has recently paid for open access to the Wilshire et al PACE trial data re-analysis paper:
    http://www.meassociation.org. uk/2017/03/thanks-to-the-mea- you-can-now-read-the-whole- independent-re-analysis-of- the-pace-trial-recovery-paper- 22-march-2017/

    But this is not something that we want to repeat - when our main duty as a small medical charity is to use our very limited financial resources to advise and support people with this illness and to fund much needed biomedical medical research into ME/CFS

    So I'm basically asking if there is some way in which the full commentaries could be made open access - without any great expense being involved

    Or, in the case of the one that I prepared with my MEA hat on, could the charity publish this on our website and in our magazine in view of the fact that the preparation involved quite a lot of work and this was done without any fee being paid

    Kind regards
    Charles Shepherd
     
    JaimeS, leokitten, Cheesus and 74 others like this.
  2. A.B.

    A.B. Senior Member

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    Thanks, it is great to see this journal is recognizing the need to make PACE trial criticism widely available.
     
  3. charles shepherd

    charles shepherd Senior Member

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    Further update from David Marks below - Open Access will also now include Keith's editorial and the PACE trial authors' response

    From the editor of JHP:

    I wanted to let you know that SAGE Publications have agreed to place all the commentary papers plus Dr Geraghty's editorial and PACE Trial authors' response on open access.

    This will greatly enhance reader access with no paywall.
     
    MeSci, Wolfiness, suseq and 43 others like this.
  4. A.B.

    A.B. Senior Member

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  5. charles shepherd

    charles shepherd Senior Member

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  6. Barry53

    Barry53 Senior Member

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    Brilliant work @charles shepherd. Also big big thanks to David Marks and the Journal of Health Psychology ... top marks in fact!
     
    MeSci, suseq, TrixieStix and 21 others like this.
  7. Karen Kirke

    Karen Kirke

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    This is fantastic news for the debate, with important ramifications. Patients and health professionals will benefit. Thanks so much, Dr Shepherd, for asking so skilfully, and huge thanks to Dr Marks and Sage Publications.
     
    Leopardtail, MeSci, suseq and 17 others like this.
  8. lilpink

    lilpink Senior Member

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    Very interested.....
     
    Binkie4, Laelia, Tyto alba and 2 others like this.
  9. Sean

    Sean Senior Member

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    Thank you, Journal of Health Psychology, SAGE, and MEA.

    :hug: :balloons:
     
    MeSci, suseq, Yogi and 12 others like this.
  10. Diwi9

    Diwi9 Senior Member

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    This is a big deal. Redemption is in sight. So much unnecessary suffering for years and years. My heart breaks for my fellow sufferers in the UK, as if the disease isn't cruel enough. I hope this news will give us all a little smile that the fraud is being exposed and the truth will prevail.
     
    MeSci, Wolfiness, suseq and 17 others like this.
  11. dangermouse

    dangermouse Senior Member

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    MeSci, suseq, MEMum and 8 others like this.
  12. ladycatlover

    ladycatlover Senior Member

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    Fabulous news! Yippee! :) Thank you Dr Shepherd and JHP. :bouquet:
     
    MeSci, suseq, MEMum and 7 others like this.
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I gather my PACE commentary piece is now published although I have not tried to track it down on the net yet.
     
    MeSci, TiredSam, TrixieStix and 40 others like this.
  14. Barry53

    Barry53 Senior Member

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    Excellent news. Crucial to keep this ball rolling now, lest the truth about PACE gets buried yet again, as too many still must hope will be the case.
     
  15. Tyto alba

    Tyto alba

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    MeSci, TrixieStix, Yogi and 22 others like this.
  16. user9876

    user9876 Senior Member

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    Its here
    PACE team response shows a disregard for the principles of science


    Jonathan Edwards
    http://journals.sagepub.com/doi/full/10.1177/1359105317700886

     
    Basilico, TrixieStix, Yogi and 26 others like this.
  17. Kati

    Kati Patient in training

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    @Jonathan Edwards I just readed your piece, and I am so very grateful you wrote it, bravo!!!

    Here is my favorite paragraph:
    Thank you so very much!
     
    MeSci, TrixieStix, Forbin and 31 others like this.
  18. user9876

    user9876 Senior Member

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    In the article you talk about the trial being open label and judged by subjective measures. I would say with the PACE trial it is worse than that. CBT and GET aim to change the way patients think about their symptoms and what they can manage. So judging their success on whether they change subjective measures is a bit like testing you used the right drug.
     
  19. dangermouse

    dangermouse Senior Member

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    Thank you VERY much.
     
    MeSci, TrixieStix, Yogi and 8 others like this.
  20. adreno

    adreno PR activist

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    Brilliant article. Thanks @Jonathan Edwards !
     
    MeSci, TrixieStix, Yogi and 10 others like this.

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