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Judge rules against QMUL on PACE trial scandal.

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    • Thread Starter

    The PACE trial is a scandal that has been rumbling on for years, but one that many of those in the UK, and particularly at QMUL, may have only heard one side of. A new judgement out this week has rejected QMUL's attempt to avoid releasing anonymised trial data, and also been critical of the way QMUL attempted to portray the trial's patient critics.

    The director of Sense About Science USA greeted news of the Tribunal's decision by stating that the "PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we should do medicine (transparent, shared)" and "PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review".


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    The response of QMUL to this scandal has been shameful. No-one within the university seems to feel that they have a responsibility to investigate patient's concerns properly. I think that this poses serious questions about the culture and values that guide the university, particularly in medicine.

    A few months back I commented on this issue, and linked to a report that summarises many of the issues. It is now time for those at QMUL, including students, to start paying attention to what is happening at the university:
    (Original post by #PACEtrial)
    Hi there, I'm really concerned about the way in which some researchers at QMUL have been spinning their data, and then attempting to smear patients who are concerned about what they've done. The QMUL administration seems to have also been attempting to portray Freedom of Infomation requests as harassment.There was a report out last week which provides some details on this: http://www.centreforwelfarereform.or...f-recovery.pdfIs this something that others at QMUL are concerned about and trying to fight against, or is no-one really bothered?
    (Original post by Queen Mary University of London)
    Hi, thanks for getting in touch.Although I am aware of the PACE trial, I am not in a position to respond on behalf of the university. Personally, I do not know enough about the study to comment on it.Sorry to not be of more help.Barts love,Will
    (Original post by #PACEtrial)
    Thanks Will.Do you know if there are people at QMUL who are interested in looking at these sorts of abuses of power? To me it seems like those responsible are able to get away with avoiding justifying their actions, and that others at QMUL aren't really interested in looking at the details. Do you think that there is a cultural problem around ethical standards at QMUL?Also, I'd be interested to know how you're aware of the PACE trial, and if QMUL have been spinning things to students too.
    (Original post by Queen Mary University of London)
    Hi,My own experience of medical research at QMUL has been positive. Medical students at Barts are taught about ethical issues surrounding medical research throughout the duration of the course.As I have stated, it would be inappropriate for me to comment specifically on the issues surrounding the PACE trial as I have not had an opportunity to read up on it.Thanks,Will

    Seconded. Absolutely disgraceful, and the institution should be forthcoming with an apology, in press, without delay
    • Thread Starter

    (Original post by Foo.mp3)
    Seconded. Absolutely disgraceful, and the institution should be forthcoming with an apology, in press, without delay
    Thanks. I agree.

    Since I last posted data from the trial has been used to show that, when using the trial's protocol recovery criteria, the treatments developed by the trial's researchers failed to lead to any significant improvement in recovery rates:


    The Canary just featured a story on some of the politics surrounding the trial, and the attempt to secure the release of data:


    If there are any impassioned students at QMUL looking for a wrong to right, this seems a worthwhile area to campaign on.

    Disgraced researcher/lead author, Peter White, has had the audacity to write an article entitled 'If my team’s research on ME is rejected, the patients will suffer', that the Guardian were foolish enough to run! Dear God, is there no limit to the malevolent pride of these cretins? Not one mention of methodology, or ounce of contrition. Arrogance beyond belief. QMUL should be utterly ashamed attempting to cover up and defend this crap, at great cost to their financial stakeholders!
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