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Breaking News: PLOS One issues Expression of Concern for PACE trial paper

Discussion in 'General ME/CFS News' started by Yogi, May 2, 2017.

  1. Yogi

    Yogi Senior Member

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    https://jcoynester.wordpress.com/20...s-expression-of-concern-for-pace-trial-paper/





     
    Last edited: May 2, 2017
    Zombie_Lurker, Sea, Woolie and 30 others like this.
  2. Valentijn

    Valentijn WE ARE KINA

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  3. charles shepherd

    charles shepherd Senior Member

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  4. slysaint

    slysaint Senior Member

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    W. Sussex UK
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  5. Yogi

    Yogi Senior Member

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    Great news!!

    Thanks to everyone and Dr Coyne.

    @Valentijn linked in the other thread to the original article 'Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis' which now gives the Expression of Concern in a background of a beautiful shade of red!

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808

    Also check out the warning sign on the article!
    [​IMG]

    Big day for pwme!!

    PACE authors, DWP and insurance industry (and AFME) > :devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil::devil:

    Everyone with ME >:):):):):):):) :):balloons::balloons::balloons::balloons::balloons::balloons::):):):):balloons::balloons::balloons::balloons::balloons::balloons::balloons:

     
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  6. user9876

    user9876 Senior Member

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    The only ones we know of is the Cochrane collaboration when they were involved in writing the analysis protocol. The fact they have shared means and will share under their policy means that there is no data protection reason for not sharing.
     
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  7. RogerBlack

    RogerBlack Senior Member

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    This is - not quite - a lie.

    They do in fact have a data sharing policy.
    It (paraphrasing) runs 'We require a pre-specified plan as to what you are going to do with the data, and will then decide if we will give you data. We will usually expect to be co-authors on the work, and only rarely if we really trust you're going to be nice will we not be.'

    They do not share with people they believe will be critical of them.
    It is quite likely any data sharing request will first be refused after a lengthy delay, then need appealed through the university, which will again refuse after a lengthy delay, and then go to the data protection tribunal.
    This is likely to take 5 years.
     
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  8. Yogi

    Yogi Senior Member

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    Utter nonsense. The English courts have listened to these bogus arguments and declared anonymised individual data is appropriate and should be released in the public interest.

    Who is on the REC?
     
    TiredSam, Jo Best, natasa778 and 3 others like this.
  9. Gijs

    Gijs Senior Member

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    I think the editor of PlOSOne is anti-science, ask Esther Crawley she knows :)
     
  10. Yogi

    Yogi Senior Member

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    Also check out the archived tweets on this link from 2012. How prescient pwme were in 2012. And the PACE authors could not see the problems?
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808

    In other words PACE = MAJOR RESEARCH FRAUD
     
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  11. user9876

    user9876 Senior Member

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    I think it is a research ethics committee who approved the trial in the first place and I think they have claimed that the REC also approved protocol changes but not sure on that one. We should remember that the head of governance at the MRC who dismissed concerns about the PACE trial and protocol changes appeared at the information tribunal to try to block the release of data.

    It is an appeal to authority with out explaining the case presented to the REC and the advice they gave and any conflicts of interest they may have due to their approval of PACE and PACE protocol changes.
     
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  12. deleder2k

    deleder2k Senior Member

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  13. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    The QMUL response is weird. Are they suffering from memory loss. Surely they already accepted the FOI tribunal ruling that they should release some of the PACE data. So what's different about this data?
     
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  14. Cheshire

    Cheshire Senior Member

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  15. Hilary

    Hilary Senior Member

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    As @Yogi has already noted - 1. who is on the REC?
    and........ 2. 'not appropriate' for what reason? They don't seem keen to say..
    What a lot of flannel...
     
    Yogi, Keela Too and Daisymay like this.
  16. A.B.

    A.B. Senior Member

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    Yay. That new PLOS One chief editor seems better than the last one.
     
  17. Stewart

    Stewart

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    There's nothing different about the data - I think it's just that QMUL has judged that that they couldn't get away with defying the Information Tribunal, but they probably can get away with defying PLOS. I guess the question now is whether PLOS considers the matter closed now they've highlighted the concerns or whether there are any further steps they're prepared to take.

    I wonder if there's any way of getting the MRC to respond to the claim that the PACE data sharing policy is consistent with the MRC's policies. That statement seems a bit of a stretch to me.
     
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  18. Cheshire

    Cheshire Senior Member

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    Data sharing in clinical research: challenges and open opportunities
    Posted May 2, 2017 by Iratxe Puebla and Joerg Heber



    http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/#.WQiy0rGY39o.twitter
     
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  19. user9876

    user9876 Senior Member

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    The MRC's head of governance supported the PACE data being kept secret but then she also dismissed concerns over outcome switching and other methodological issues.

    The question for the MRC may be if PACE is wrong to share why are others sharing.
     
    Esther12, TiredSam, lilpink and 4 others like this.
  20. Kati

    Kati Patient in training

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    This was an image created using @ballard 's artwork when the tribunal ordered to release the data. I may just have to update the text to reflect what just happened today.

    @ballard if you are working on a new cartoon I will be more than happy to share widely.
     
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