Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Trudie Chalder to speak in London, April 11th

Discussion in 'General ME/CFS News' started by Kati, Apr 5, 2016.

  1. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,309
    Title of her talk: Clinical Trial Controversies – the challenge of the PACE study

    http://www.icr-global.org/community/forums/ethics-gcp-forum/

    The conference is on Ethics
    The ICR Ethics and GCP Forum provides an excellent opportunity to:

    • Keep up to date with current ethical and clinical research issues
    • Learn about new industry and regulatory initiatives
    • Hear key industry figures speak about their specialist fields
    • Network with fellow clinical research professionals
    Source: with thanks to @maxwhd on twitter.
     
    Last edited: Apr 5, 2016
  2. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,518
    Likes:
    19,257
    Germany
    About The Institute
    The Institute of Clinical Research (ICR) is one of the world's premier organisations for professionals involved in the design, management and conduct of human clinical trials. Members are engaged in all aspects of work in clinical research, both directly and in the support services.

    The Institute was founded in 1978 as ACRPI (The Association of Clinical Research for the Pharmaceutical Industry). In 2000 it changed its status to become The Institute of Clinical Research. It is a not-for-profit organisation, guided by a Board of Directors who are elected by the membership and is based at its Head Office on the outskirts of Maidenhead, Berkshire, UK, with over 3000 members in 49 countries around the world.
     
    Invisible Woman, Esther12 and Kina like this.
  3. user9876

    user9876 Senior Member

    Messages:
    2,392
    Likes:
    16,132
    I expect she will talk about the ethics of outcome switching and the ethics of not declaring CoIs to trial participants. Or maybe the ethics of spinning a null result as if it was in favour of the chosen treatments.

    Or perhaps she will talk about the ethics of dismissing a group of severely ill patients as a violent and aggressive so that people ignore their opinions.

    I would say that drug companies would be interested in how PACE have got the UK scientific community behind their outcome switching but I tend to think drug companies would act with a better sense of ethics. Or perhaps drug companies just wouldn't want to promote treatments on such tenuous evidence.
     
  4. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,309
    She will probably try to explain why there was no lock on the cabinet that held private patient information, some of which was stolen, and why they can't release unidentifiable data (which seemingly is locked now) because they promised the patient their information would be kept confidential.
     
  5. A.B.

    A.B. Senior Member

    Messages:
    3,540
    Likes:
    21,405
    All part of the campaign to save PACE and face.
     
  6. user9876

    user9876 Senior Member

    Messages:
    2,392
    Likes:
    16,132
    I think they are trying a new tactic to try to claim they are the ethical ones in the debate. They have found if they keep repeating a line enough journalists in the UK and those in authority believe them. The problem they have is that people in the US are looking and are shocked.
     
  7. BurnA

    BurnA Senior Member

    Messages:
    1,985
    Likes:
    8,764
    Can we do anything ... Distribute leaflets, send emails, protest outside ....

    I say 'we' but I am not in the UK so I can't be there but if anyone was local and was keen to do something then it would be great.
     
  8. The lunatics haven't just taken over the asylum, they sell tickets! :p
     
  9. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    This talk is taking place at UCL, @Jonathan Edwards.

    Anything the MEA can do, @charles shepherd?

    The PACE authors' ideas of their ethical obligations towards patients seem rather... unusual. I don't think it would be fair to the audience to hear only one side of what has gone on in the PACE trial - nor in the interests of patients.
     
  10. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,789
    Likes:
    9,131
    Toronto
    As always now--we'll be watching. We know what to do about people looking for support for their lies--and we know they won't get away with it--not now.
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,077
    They are hiring a room at UCL. This seems like a strange commercial organisation aimed at administrators or something and registration is closed. My thought at present is that there is no need to try and make a noise at some potty little commercial organisation set up to sell career accreditation points for attending lectures. There are bigger fish to fry.
     
  12. Esther12

    Esther12 Senior Member

    Messages:
    8,239
    Likes:
    26,387
    I would love a recording of the talk though. They keep giving us more rope, and I want it all!
     
  13. Yogi

    Yogi Senior Member

    Messages:
    982
    Likes:
    6,144
    We always said that the PACE psychobabblers just talk pish and the PACE trial was a load of pish.

    How apt that Trudy Chalder would be described as "Professor of the Cognitive Behavioural Pshycotherapy" in the conference delegate pack and agenda.

    It seems a very odd conference as most are pharma related people in drug development.

    The other two of interest are

    Janet Messer (NHS Health Research Authority)
    https://uk.linkedin.com/in/janet-messer-56895b10

    Laura Bousfield (NHS National Institute Health Research)
    https://www.crn.nihr.ac.uk/about-crn/meet-team/laura-bousfield/

    If I were them I would not be wanting to be seen to be associated with Trudy Chalder. Very odd indeed that she is not worried about her ethics violations in front of them. Or maybe Chalder is being used as a textbook example of how not to conduct research.

    It is very bizarre and Chalder seems to be brought in as the main COMEDY act after lunch to entertain the delegates . I would love to see a video recording of this.
     
  14. BurnA

    BurnA Senior Member

    Messages:
    1,985
    Likes:
    8,764
    Janet Messer has a key lead responsibility for implementing a new integrated system for approval of health research in England. She also works collaboratively with a wide range of partner organisations to fulfil the HRA’s aims to make it easier to do good quality ethical research in the UK. Prior to working at the HRA she was Head of Research Management and Governance at the NIHR Clinical Research Network, where she was responsible for a major change programme to improve the NIHR Coordinated System for gaining NHS Permission. She has a PhD in biochemistry from University of Cambridge, followed by many years’ experience of clinical research in the pharmaceutical industry. Previous roles in NHS R&D include running the Integrated Research Application System (IRAS) and leading a number of national initiatives to improve NHS research management through the NHS R&D Forum.

    - See more at: http://www.hra.nhs.uk/about-the-hra/board/#sthash.gq5IZMNB.dpuf

    The HRA was established in December 2011 to promote and protect the interests of patients in health research and to streamline the regulation of research. We aim, with partners, to make the UK a great place to do health research, to build confidence and participation in health research, and so improve the nation’s health. - See more at: http://www.hra.nhs.uk/about-the-hra/who-we-are/#sthash.UOn7HfCT.dpuf
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,077
    Since the title of the talk is 'controversies' it would seem more relevant to call it the challenge to the PACE trial rather than the challenge of the PACE trial. But maybe this is the challenge faced by the PACE authors in trying to deal with the ethical dilemma of being asked to release confidential patient data.

    The meeting seems to be for bureaucrats with an eye on money. The phrase 'make the UK a great place to do health research' is very much commercial speak. For academics it would be 'make it easier to do health research in the UK'.
     
  16. BurnA

    BurnA Senior Member

    Messages:
    1,985
    Likes:
    8,764
    Are these people influencial in approving money for research ?
    If so would it be important to highlight the fundamental flaws and the subsequent waste of money the Pace Trial represents.

    In addition it wouldnt do for these people to get the impression ME/CFS can be treated as per PACE.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,077
    I think these people are influential in creaming off about 50% of any money given in research grants, but not in the decisions to award grants. They are interested in rules and getting a regular salary out of rules. They are not actually interested in getting research done - which is why so little research is getting done now and why I gave up trying to do research in 2010. The rules may be OK but the costs of monitoring them are prohibitive.
     

See more popular forum discussions.

Share This Page