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UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Oct 28, 2021.

  1. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Only eight?!! Is it ethical to have one of the journal editors as an author? Can't wait to see how quickly Paul Garner and Live Landmark stamp their approval of it after it's published
     
    alktipping, sebaaa, Solstice and 8 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    It will be interesting also to see how the SMC respond. They seem to have gone quiet on ME/CFS.
     
  3. Adrian

    Adrian Administrator Staff Member

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    I've been looking at submitting a paper to a journal where the co-author is one of two editors. We have aranged with the editor to have a different process to submit.
     
    Barry, bobbler, Solstice and 9 others like this.
  4. Andy

    Andy Committee Member

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    The next meeting of the All Party Parliamentary Group for ME will include
    More detail here, UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward
     
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,202
  6. Keela Too

    Keela Too Senior Member (Voting Rights)

    I haven’t read it all yet, however -
    They don’t seem to mention that the 2007 guide was for CFS/ME
    and the new one for ME/CFS.
    That seems an important change to me.
    (& why do they add the dots in M.E./CFS? NICE didn’t)
     
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    It seems to be a standard (odd) way they write it in most/all (?) of their publications
     
    Keela Too, MEMarge, Barry and 3 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

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    Especially odd to not also do "C.F.S." if they are going to do "M.E." Consistently inconsistent.

    Edited to correct silly typo.
     
    Last edited: Mar 28, 2023
  9. Trish

    Trish Moderator Staff Member

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  10. Barry

    Barry Senior Member (Voting Rights)

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    Eek! Thank you. Edited.
     
  11. Andy

    Andy Committee Member

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  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Apologies for cross-posting from another thread:

    This year's Conference of the European Association of Psychosomatic Medicine (EAPM) in June 2023 in Wrocław (Poland) will dedicate a 'symposium' to the new Guideline:

    https://www.eapm-conference.org/index.php/program/main-program

    FRIDAY 16 | 10:15-11:30 | KAMIENICA ROOM

    SYMPOSIUM
    CFS/ME: CONTROVERSY AND COMMUNICATION FOLLOWING THE 2022 UK NICE GUIDELINES

    CHAIR
    Per Fink.

    Research Clinic for Functional disorders and Psychosomatics, Aarhus University Hospital. Denmark
    • What is CFS, the evidence for treatment and the controversy?
      Michael Sharpe
      .
      University of Oxford. President of the European Association of Psychosomatic Medicine (EAPM). United Kingdom.
    • Facts and myths of CFS/ME, how do we navigate, in research and in the clinic?
      Per Fink
      .

      Research Clinic for Functional disorders and Psychosomatics, Aarhus University Hospital. Denmark
    • Wake me when it´s over. A personal story about a rapid recovery from CFS/ME.
      Live Landmark
      .

      Department of Psychology, Faculty of Social and Educational Sciences, Norwegian University of Science and Technology. Norway
    • Debate and misinformation in the press and on social media - can we do anything about it?
      Lene Toscano
      .

      Center for Functional Disorders, Region of Southern Denmark. Denmark
     
    Last edited: Apr 28, 2023
  13. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    You could close Garner's Twitter account!
     
  14. bobbler

    bobbler Senior Member (Voting Rights)

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    Indeed, I am imagine as usual for these things from this area it will all be very back-to-front where the misinformation is information and what they call facts is misinformation.

    When people note these groups and individuals are closer to populist politicians I do have to agree. I suspect their research is about selling an attitude towards certain individuals than it is about actual research, and indeed their treatments are always the same just with rebranding of different labels and terms that are badly elucidated into anything being produced by them in order to call people new names. I'd never call it marketing because that properly is orientation to consumer needs, but it is some form of propaganda type thing, and the title of many of these talks seems to give this away what this 'subject area' really is and focuses on.

    I can't find the video that was posted recently of Sharpe at a conference doing a rather 'motivational speaker, everyone stand we can do this' stylee spiel suggesting that the sky was the limits in their ideology being applied to all people - which had the rather interesting bit in the middle where he suggests they think/thought we were deluded but they are type thing. I thought that that really is proper insight and says it all really. Personality, targeting, selling but not much real 'care', very little talk about forensics of any treatments and why they might have even thought they would help other than fake claims about mental health as a diss (using the term as a weapon by really meaning 'can't think straight/have false beliefs' as a diss, but pretending it is illness rather than just an assertion to 'get one over' and harm people) for the people with physical conditions they talk about. It feels like an out of hand and unsafe and unoversighted out of control area. That has extreme power over people which everyone knows tends to atract the wrong type of individuals too and so should have much more regular and close oversight than normal areas.
     
  15. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Do we have a transcript of this?

    Turns out that could be useful for any comment on the freshly published IQWiG report on ME/CFS. (see News from Germany thread)

    Apologies, now too unwell to link and explain in more detail: The report does include a summary of recommendations by other national institutes like the (former) IOM and NICE.

    Unfortunately, it also uncritically includes a summary of the criticism by Royal Colleges and Flottorp et al.

    https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf


    Criticism on the NICE guideline pp. 172-173


    I think that warrants to be rebutted in any coverage.
     
    Last edited: May 15, 2023
    RedFox, MeSci, bobbler and 3 others like this.
  16. Andy

    Andy Committee Member

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    No, as to date I don't believe it has ever been published.
     
    alktipping and Peter Trewhitt like this.
  17. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thanks Andy.

    Haven't even been able to listen to it yet -- just expect that it's as instructive as Adam's rebuttal of Fiona Fox's inaccuracies about research on ME/CFS and about patient activism in her recent memoir.

    At least just recalled that Brian Hughes posted a prebuttal of the announced 'eight errors' criticism on his blog, too:

    Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS - The Science Bit

    https://thesciencebit.net/2023/01/1...-bemoaning-the-new-nice-guideline-for-me-cfs/

    Anyway, a rebuttal of the summary in the IQWiG report might need to address additional or different points to the announced opinion piece by the NICE critics that is not quoted by IQWiG as it hasn't been published yet (hopefully never will).

    The references in the IQWiG report are:

    147. Torjesen I. Exclusive: Four members of NICE's guideline committee on ME/CFS stand
    down. BMJ 2021; 374: n1937. https://dx.doi.org/10.1136/bmj.n1937.

    148. Royal College of Physicians. Medical leaders sign joint statement in response to NICE
    guidance on ME/CFS [online]. 2021 [Zugriff: 17.11.2022]. URL:
    https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-
    guidance-mecfs.

    149. Turner-Stokes L, Wade DT. Updated NICE guidance on chronic fatigue syndrome. BMJ
    2020; 371: m4774. https://dx.doi.org/10.1136/bmj.m4774.

    150. Flottorp SA, Brurberg KG, Fink P et al. New NICE guideline on chronic fatigue syndrome:
    more ideology than science? Lancet 2022; 399(10325): 611-613.
    https://dx.doi.org/10.1016/S0140-6736(22)00183-0.


    Forum thread on 150 here.

    Sure the other three have been torn apart on the forum too.


    :ill::asleep:
     
    Last edited: May 15, 2023
    RedFox, MeSci, alktipping and 4 others like this.
  18. Trish

    Trish Moderator Staff Member

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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://gpnotebook.com/simplepage.cfm?ID=-1395654601
     

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