1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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 'Psychosomatic news - ME/CFS and Long Covid' started by MEMarge, Oct 22, 2019.

Tags:
Page 1 of 7
  1. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,750
    Location:
    UK
    Last edited by a moderator: Oct 22, 2019
    MEMarge, Oct 22, 2019
    #1
    sea, ladycatlover, Chezboo and 7 others like this.
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,750
    Location:
    UK
    MEMarge, Oct 22, 2019
    #2
    sea, rvallee, ladycatlover and 7 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    52,323
    Location:
    UK
    Outcome of an expert panel review of eleven publications on Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME)

     
    Trish, Oct 22, 2019
    #3
    bobbler, Binkie4, sea and 15 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,277
    Location:
    UK West Midlands
    Fudge and humbug
     
    NelliePledge, Oct 22, 2019
    #4
    Binkie4, Barry, Snow Leopard and 17 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,584
    Location:
    UK
     
    Sly Saint, Oct 22, 2019
    #5
    Anna H, rvallee, ladycatlover and 7 others like this.
  6. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    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
    Sid, Binkie4, Anna H and 15 others like this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,508
    Location:
    London, UK
    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
    #7
    bobbler, Binkie4, Snow Leopard and 21 others like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    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
    sea, JohnTheJack, Anna H and 4 others like this.
  9. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    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
    sea, Anna H, ladycatlover and 7 others like this.
  10. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,330
    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
    sea, Anna H, anniekim and 8 others like this.
  11. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK

    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
    sea, Anna H, Sly Saint and 14 others like this.
  12. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    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
    Binkie4, It's M.E. Linda, Anna H and 18 others like this.
  13. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It gives a whole new meaning to "on the NOD".
     
    chrisb, Oct 22, 2019
    #13
    ladycatlover, MSEsperanza, alktipping and 3 others like this.
  14. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    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
    #14
    Anna H, Lidia, rvallee and 12 others like this.
  15. Trish

    Trish Moderator Staff Member

    Messages:
    52,323
    Location:
    UK
    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
    Sid, sea, mango and 20 others like this.
  16. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,669
    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
    sea, Anna H, anniekim and 26 others like this.
  17. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,246
    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
    sea, Robert 1973, mango and 29 others like this.
  18. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    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
    alex3619, rvallee, ladycatlover and 8 others like this.
  19. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,750
    Location:
    UK
    MEMarge, Oct 22, 2019
    #19
    rvallee, MSEsperanza, alktipping and 4 others like this.
  20. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

    Messages:
    833
    Location:
    Oxford UK
    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
    sea, 2kidswithME, JohnTheJack and 9 others like this.
Page 1 of 7

Share This Page