Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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UK: Minister to enshrine protection for research independence

Discussion in 'General ME/CFS News' started by John Mac, Feb 25, 2017.

  1. John Mac

    John Mac Senior Member

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    Liverpool UK
    http://www.bbc.co.uk/news/science-environment-39078281
    It's a shame the law wasn't around when the DWP were funding PACE.
     
  2. RogerBlack

    RogerBlack Senior Member

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    That seems to be not relevant.

    A few moments search implies that the official reason given for DWPs involvement was the fact that https://en.wikipedia.org/wiki/Mansel_Aylward was Chief Medical Adviser, Medical Director and Chief Scientist of the DWP at the time.

    https://www.ncbi.nlm.nih.gov/pubmed?term="Aylward M"[Author]

    Neglecting anything else, at this time, it was 'reasonable' for the chief scientist to put funds towards a study that purported to be able to help with therapies of the sick, in order to get them off benefits.

    Also
    It could be reasonably argued that it's solidly within the remit of the DWP to fund research into getting people back to work - something that is not specifically a medical issue.

    And in fact, a properly run PACE trial could have answered very simply the questions around APT and CBT. The real question is - was there any input from other than the researchers in the weakening of the PACE trial and its poor implementation as it went on.

    I see absolutely no reason to suspect this - all you need is scientists skirting the boundaries of being too obviously biased in order to further their careers and shoddy peer review.

    Peer review has problems - in general many peer reviewers do not carefully inspect every part of the document and they do not communicate to the other reviewers which bits they have not looked at. This can mean that relatively subtle effects (for example inappropriate statistical treatment of scales with nonlinear results) are completely overlooked, where as a rational peer review would at least ensure that someone has looked at every part of the paper, not just skimmed parts they did not understand.

    It is interesting to note:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359054/pdf/bmj00562-0061b.pdf

    A letter to the BMJ from him on CFS in 1996.
    The letter is mixed, though shows even at this stage, thoughts around somatisation are in there.
     
    Last edited: Feb 25, 2017
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  3. Esther12

    Esther12 Senior Member

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    I reckon we need more political interference with research. Some more room for democracy might shake off the assumption that 'science' is somehow magically independent of politics. Not sure that things could get much worse.
     
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  4. user9876

    user9876 Senior Member

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    I think there is a problem in that most politicians are not scientists and so buy the line that they shouldn't interfere. What other area that government funds would be so hands off.

    Whilst they shouldn't be saying yes or no to particular grant proposals they should be setting out a framework of priorities and governance. To often bad research gets funded because it is a club and the results and methodology never really get looked at. Equally research can miss the point of what is important or simply miss whole areas that are important. Some of that can be because it is outside the area of interest of those senior academics who sit on committees.

    Interestingly companies do have an effect on research strategy in that many EPSRC grants are expected to be accompanied by letters expressing interest and commitment from industry. Having said that in my area of work where funding is growing industrial and government involvement has helped in setting out a good set of priorities.
     
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  5. user9876

    user9876 Senior Member

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    I think funding of PACE was a vanity project from within the DWP by Aylward - in that it met his personal interests and was being done by people he has been associated with so he bunged them some money. It was the only research funded by the DWP at the time. I see it as completely inappropriate, not because it represents a desire from the DWP, but because it feels like it represents strange practices and ways of spending money from a government department.
     
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