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REC advice on PACE trial data changed in favour of release

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by JohnTheJack, Jul 11, 2019.

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  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I pursued this after the failure of PLOSONE to make the researchers hand over the data in compliance with the journal policy. The researchers relied on the REC.

    See Expression of Concern and Response here:
    https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037

    I asked the REC to reconsider. They did but confirmed the decision. I appealed. The decision was confirmed. I appealed to the Chief Executive of the HRA. I received the decision this morning.

    The REC advice now is that data should be released. I have emailed PLOSONE asking them in light of this change to enforce their conditions of publication and require the sharing of the data.
     

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    JohnTheJack, Jul 11, 2019
    #1
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  2. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Thank you for your tenacity!
     
    ukxmrv, Jul 11, 2019
    #2
    Forbin, Joel, Barry and 30 others like this.
  3. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Wow, very interesting!
     
    Snow Leopard, Jul 11, 2019
    #3
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  4. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Excellent Thanks John.
     
    Adam pwme, Jul 11, 2019
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    Barry, Annamaria, dangermouse and 18 others like this.
  5. Andy

    Andy Committee Member

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    Great work John.

    I assume in this bit
    the FTT referred to was Alem's appeal?
     
    Andy, Jul 11, 2019
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  6. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Wow, that's an amazing achievement - well done!
     
    EzzieD, Jul 11, 2019
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    Barry, Sean, Annamaria and 13 others like this.
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks.

    Yes, I relied heavily on Matthees. It's asburd for the ICO and FTT to be saying one thing and the REC another.

    Note also 'majority finding'. The researchers have tried to make heavy play of that, but it's meaningless. Once a court/tribunal has decided, it's decided.
     
    JohnTheJack, Jul 11, 2019
    #7
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  8. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thank you John. Your persistence defies belief. Thank you for doing this.
     
    Binkie4, Jul 11, 2019
    #8
    Woolie, hinterland, Webdog and 17 others like this.
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    An excellent result @JohnTheJack , I commend your persistence. It will be interesting if the Journal now up holds its own policies.
     
    Peter Trewhitt, Jul 11, 2019
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  10. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Medfeb, Jul 11, 2019
    #10
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  11. Sasha

    Sasha Senior Member (Voting Rights)

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    Well done, @JohnTheJack. Appalling that you should have had to go through such a battle.
     
    Sasha, Jul 11, 2019
    #11
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  12. Simone

    Simone Senior Member (Voting Rights)

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    Well done, @JohnTheJack. It’s unbelievable (and yet, totally believable) how hard you’ve had to fight for this.
     
    Simone, Jul 11, 2019
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  13. Simon M

    Simon M Senior Member (Voting Rights)

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    Great work, @JohnTheJack

    I liked the way the letter ended:

    Your appeal has therefore been upheld.

    Please accept my thanks for bringing this to our attention. As you may be aware, the HRA is consulting on transparency and openness in health and social care research and would be keen to hear your views on the development of the final transparency strategy.
     
    Simon M, Jul 11, 2019
    #13
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  14. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Excellent result, thanks so very much indeed for you dogged work on all of this, stellar! And of course always remembering Alem's part in all of this x
     
    Daisymay, Jul 11, 2019
    #14
    Woolie, MEMarge, Webdog and 17 others like this.
  15. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Well done John! Interesting to see how this will develop. This is a bit embarrassing for PLOS ONE as well I suppose. I hope that they will now require the sharing of the data but I really don't want that McCrone et al. 2012 paper to be retracted because it contains some of the objective data of the PACE-trial.
     
    ME/CFS Skeptic, Jul 11, 2019
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    Woolie, Yvonne, MEMarge and 19 others like this.
  16. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks for the kind words everyone. I won't really reply to individual posts but I have read them all.

    Yes, I agree it is, especially as we have been pressing them on this for some time. I first responded over two years ago https://johnthejack.com/2017/05/04/a-response-to-the-blog-by-puebla-and-heber-of-plos-one/ and then had an email exchange with Heber this year, first after an FOI request revealed the actual REC advice and then after QMUL released some of the data in question. He refused to budge. Now, surely, they must.

    I think McCrone will now release the data rather than have the paper retracted.
     
    JohnTheJack, Jul 11, 2019
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  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Odds of the paper being retracted instead of having to share the data? 2:1?

    Can they do that, take their ball and go home instead of complying with something that will be highly damaging?
     
    rvallee, Jul 11, 2019
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  18. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Wow :thumbup:
     
    dangermouse, Jul 11, 2019
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    MEMarge, Sean, Daisymay and 4 others like this.
  19. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I would put sharing data 19:1.

    The data is gradually coming out and they must see that so better that than suffer the indignity of a retraction.
     
    JohnTheJack, Jul 11, 2019
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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    I guess that's one of the lessons from the first release of PACE data: it made almost no difference to have their BS exposed. If inflating the efficacy of their treatment 6x and basically cherry-picking the outcome they wanted had little impact, it's probably a safe bet that it will make little difference again, in the short term anyway.

    There's some relief in knowing they'll eventually face retraction anyway. It's just a question of how much time and how many more lives are broken in the process.

    James Coyne was one who made a lot of noise about this dataset. Is he still interested?
     
    rvallee, Jul 11, 2019
    #20
    Yvonne, MEMarge, Webdog and 9 others like this.
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