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Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

Discussion in 'General ME/CFS News' started by Tom Kindlon, Jul 14, 2014.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Peter Denton White/Queen Mary, University of London have again refused to release data from the PACE Trial, which cost £5 million of UK taxpayers' money and was supposed to be (using their own description) the "definitive" trial of CBT, GET, adaptive pacing therapy and no individual therapy.

    They claim a request for the 6-minute walking test results for the (so-called) recovered group is "vexatious."

    Many will recall the extremely odd definition of recovery the authors published. People could be classed as recovered with a SF-36 physical function score of 60, meaning one could deteriorate from an entry level of 65 (which represented disabling fatigue) and be counted as recovered.

    https://www.whatdotheyknow.com/request/raw_data_for_6mwt
    cigana, Roy S, snowathlete and 10 others like this.
  2. alex3619

    alex3619 Senior Member

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    Can we respond that they are being obstructionist?
  3. Legendrew

    Legendrew Content team

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    They have nothing to fear in releasing the data supposing they have nothing to hide... If I'd done a trial that showed absolute recovery from ME/CFS I'd share every piece of raw data I could to ensure people could see the strength of my trial.
    snowathlete, SDSue, Helen and 9 others like this.
  4. Scarecrow

    Scarecrow Senior Member

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    'Vexatious' how? Is this the researcher that Peter White complained about to her university?
  5. Dolphin

    Dolphin Senior Member

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    No, that is a separate person (Keith Geraghty).
    Valentijn likes this.
  6. Scarecrow

    Scarecrow Senior Member

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    Thanks @Dolphin. Do you know what the background is to Dr Sheridan's request? Is there any truth in Peter White's allegation. Or is he just allowed to pluck words out of the air without substance? You would imagine that if a request was refused on such grounds that White would have to show in what way it is vexatious.
  7. Scarecrow

    Scarecrow Senior Member

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    Or am I just hopelessly naïve?
  8. Dolphin

    Dolphin Senior Member

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    I don't think there is any truth to Peter White's allegation: Dr Sheridan is genuinely interested in knowing the results. So to use your wording, I think he is "plucking words out of the air without substance."
    Valentijn likes this.
  9. Scarecrow

    Scarecrow Senior Member

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    Presumably that makes all of us vexatious then.
    A.B., MeSci, Valentijn and 2 others like this.
  10. Sean

    Sean Senior Member

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    Exactly. It is simply illogical for White not to release the data, if it supports his claim.

    It only makes sense for him to stonewall if it does not.

    More than a little telling that it is patients who are asking for data to be released, and also for more objective outcome measures to be used, while the professional 'scientific' psychosocialists are fighting both those requests tooth and nail. I think that pretty much sums up the situation, and makes it crystal clear who actually wants real science done, and who doesn't.
  11. Tom Kindlon

    Tom Kindlon Senior Member

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    I highlighted this in a few places. One person e-mailed me this suggestion which I thought I would throw out (I don't live in the UK so am not inclined to do it myself):
    snowathlete, MeSci, Valentijn and 2 others like this.
  12. seanpaul

    seanpaul

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    sorry Im lost - could you fill in the background to this please?
  13. Dolphin

    Dolphin Senior Member

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    The PACE Trial was a big, expensive trial of CBT, GET, adaptive pacing therapy or no individual therapy (all had specialist medical care) for CFS.

    They claimed that 21/22% recovered with CBT and GET, while only 7% did with adaptive pacing therapy or no therapy.

    However, they used a changed definition of recovery from the one that was planned. People on PR generally think it was a ridiculous definition e.g. could score only 60 on the SF-36 physical functioning questionnaire and be counted as recovered. The distance achieved on the 6-minute walking test would help give good information on whether most people would consider these people recovered or not.
  14. lnester7

    lnester7 Seven

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    The way to go is contact the Cfs sympathetic writers ( that have published Lately on Cfs) ASAP and give this study. Make noise, if they are public and situation is known everybody will start questioning the validity.

    Also, write a paper and maybe they will give you access to then original paper or make it official the question of the paper by publishing something about the questions! Fight fire with a full force

    That should be our new motto. Fight back in a big splashy way!
    hope, A.B., alex3619 and 2 others like this.
  15. seanpaul

    seanpaul

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    They claim a request for the 6-minute walking test results for the (so-called) recovered group is "vexatious."

    where does this bit come from - I understand the PACE Trial - just not the complaint, who its against and who said what, when, where and to whom?
  16. ukxmrv

    ukxmrv Senior Member

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    I have already sent something to the "more or less" program on Radio 4 but there was no response. Was well over a year ago.
    Roy S and Dolphin like this.
  17. Dolphin

    Dolphin Senior Member

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    Dr Anna Sheridan requested the data - see: https://www.whatdotheyknow.com/request/raw_data_for_6mwt
  18. seanpaul

    seanpaul

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    where is the original reference to Peter White's comments that the request was 'vexatious'?
  19. Dolphin

    Dolphin Senior Member

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    https://www.whatdotheyknow.com/request/raw_data_for_6mwt
    Peter White is the Chief Principal Investigator of the trial. He is based in QMUL so it was presumably his decision.
    snowathlete, MeSci and Valentijn like this.
  20. Sasha

    Sasha Fine, thank you

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    Bizarre... it's a perfectly reasonable question and one that the peer reviewers should have been asking.
    snowathlete, shahida, Dolphin and 2 others like this.

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