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HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

Discussion in 'PsychoSocial ME/CFS News' started by MEMarge, Oct 22, 2019.

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  1. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Last edited by a moderator: Oct 22, 2019
    MEMarge, Oct 22, 2019
    #1
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  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    MEMarge, Oct 22, 2019
    #2
    sea, rvallee, ladycatlover and 7 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Outcome of an expert panel review of eleven publications on Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME)

     
    Trish, Oct 22, 2019
    #3
    sea, andypants, alex3619 and 13 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Fudge and humbug
     
    NelliePledge, Oct 22, 2019
    #4
    Barry, Snow Leopard, sea and 16 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Oct 22, 2019
    #5
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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    What a ridiculous statement from Sonya.

    Could there have been any way to prevent researchers from responding to concerns? What about the HRA's work makes Sonya think that they are the appropriate channel for concerns like this? Is she really impressed by the quality of their analysis of PACE or Crawley's work?

    To think I had been saying that there are some signs of improvement at Action for ME.

    Has anyone found any justification for classing the interviewing of participants in a pilot trial as a 'service evaluation'? Are they trying to argue that any research that tries to improve services can be seen as a service evaluation? Even though that would include a huge swathe of research?
     
    Esther12, Oct 22, 2019
    #6
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think it would have been better for AfME to say nothing at all rather than sound like they are trying to smooth over ruffled waters. The statement: It’s essential that, when questions or concerns are raised, researchers have the opportunity to respond, through appropriate channels like the HRA. seems to make no sense at all. I was not aware that we had heard any meaningful responses from the researchers.
     
    Jonathan Edwards, Oct 22, 2019
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    That is so often the case. Why can't they just stay quiet, at least until they've spoken to someone who knows what they're talking about?
     
    Esther12, Oct 22, 2019
    #8
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  9. Adrian

    Adrian Administrator Staff Member

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    I wonder if there is an investigation via an FoI worth doing to see the times that the 'pilot clinical service' was running (i.e. was it only set up from the perceptive of a research project). To see who funded the pilot service (i.e. was it normal clinical funding or was it via a separate route - if it was what was said in the funding bill).

    Also a complaint to the Bath hospital trust over using the school absence service to force treatment (i.e. a failure of getting patient consent)

    I suspect it may also be a violation of the DPA.
     
    Last edited: Oct 22, 2019
    Adrian, Oct 22, 2019
    #9
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  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    Between this and Sterne(?)' s bias assessment for Cochrane I fear that future research will get even worse.

    Who is protecting whom?
     
    Amw66, Oct 22, 2019
    #10
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  11. Adrian

    Adrian Administrator Staff Member

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    Really they should be raising concerns about ethical permissions to the HRA at the highest level and getting them to clarify points such as is it acceptable to pilot service and do a service evaluation without ethical approval and what guidance would they give to ensure that this isn't a backdoor for unethical research. Also getting them to clarify whether it is acceptable to extend a feasibility study to a full study thereby avoiding scrutiny of a full ethics committee.
     
    Adrian, Oct 22, 2019
    #11
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  12. Adrian

    Adrian Administrator Staff Member

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    I've quickly skimmed the report and my thought is this is academics protecting academics and institutions but I suspect behind the scenes people know it is wrong and note of this gets taken. The British establishment can end up working this way and it is not a good way to operate.
     
    Adrian, Oct 22, 2019
    #12
    It's M.E. Linda, Anna H, Lidia and 17 others like this.
  13. chrisb

    chrisb Senior Member (Voting Rights)

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    It gives a whole new meaning to "on the NOD".
     
    chrisb, Oct 22, 2019
    #13
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  14. Adrian

    Adrian Administrator Staff Member

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    The concern would be that the HRA have effectively authorized people to do dodgy trials as 'service evaluations' particularly for non pharma trials - but trials could be done with existing drugs this way!.
     
    Adrian, Oct 22, 2019
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  15. Trish

    Trish Moderator Staff Member

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    I have only skimmed this, but I can't see how they think the school absence study is service evaluation. On that basis anyone wanting to do research and call it service evaluation just has to do whatever the hell they want to and call it service evaluation, so long as they are careful not to reveal any research hypothesis at any stage.
     
    Trish, Oct 22, 2019
    #15
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  16. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    It seems to me on first reading that the investigation found against the Bristol researchers on the matters of fact, but then said we are not going to do anything meaningful about it, we are going to make life as easy as possible for these dodgy researchers and not seriously look at how such can be prevented from happening again.
     
    Peter Trewhitt, Oct 22, 2019
    #16
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  17. dave30th

    dave30th Senior Member (Voting Rights)

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    exactly. It is the same approach taken by Archives of Disease in Childhood with the LP study. All the things were wrong, as I documented, but let's just regard them as technical violations rather than substantive.
     
    dave30th, Oct 22, 2019
    #17
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  18. chrisb

    chrisb Senior Member (Voting Rights)

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    The constraints imposed by the terms of reference may have had an impact.

    It is not within the panel's remit to determine whether there has been misconduct by any person.
     
    chrisb, Oct 22, 2019
    #18
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  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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    MEMarge, Oct 22, 2019
    #19
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  20. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I have now...but only just. I have quickly read the comments but not the report. Can't wait.... :-/
     
    Caroline Struthers, Oct 22, 2019
    #20
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