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New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

Discussion in '2020 UK NICE ME/CFS Guideline' started by Kalliope, Feb 11, 2022.

  1. Keela Too

    Keela Too Senior Member (Voting Rights)

    This! Exactly this!
    There were of course some robust discussions, but there was considerable compassion towards patients from all quarters. The new guideline may not be perfect in the eyes of all, but I agree, it is a huge achievement.
     
    Last edited: Feb 25, 2022
    Solstice, Hutan, Wits_End and 16 others like this.
  2. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I think that these points need to be acknowledged and communicated more, also the round table discussion moderated by Dame Carol Black. @dave30th

    If some people still object to the work done by the NICE guideline committee, they also object to all those members who left the committee after they had signed off on the new guideline, and they also object to the view that the round table was a success.

    I wish we could ask the round table's moderator Dame Carol Black what her take on that is.

    The Round table minutes are available on the NICE guidelines website:

    https://www.nice.org.uk/guidance/ng206/history

    Direct link to the minutes:
    https://www.nice.org.uk/guidance/ng206/documents/minutes-31

    Direct link to the presentation:
    https://www.nice.org.uk/guidance/ng206/documents/workshop-notes-4
     
    Last edited: Feb 25, 2022
  3. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    There's a career development strand under EU funding programs - Marie Skłodowska-Curie Actions

    I had a look at a few biops and it seemed more about "me" and my career. However, I'm not saying it isn't a useful development route for some research areas. Haven't looked at the UK "career development" stuff - maybe it's similar to the Marie Skłodowska-Curie Actions.
     
    Sean and CRG like this.
  4. bobbler

    bobbler Senior Member (Voting Rights)

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    Not a big expert on this but I do know that it would be an unusual situation for any academic to be seen as above the usual bars/demands of producing good research and teaching/other committments. I suspect that in many institutions then good research alone can be enough.

    HOW that research is judged is an important matter, however, and I know that the REF (preceded by the RAE which was more quality-focused) is the biggie but happens only 6-8yrs. Citations is one measure for papers under the REF - so of course having a set-up where a group cites their own papers is a big help in this. Impact is another that came in with the REF and suspect their news articles and various other things help there.

    What I'd be intrigued to find out more is whether there are other interim 'output/quality' measures by which departments just that an academic staff member is up to snuff outside of this REF round. I know that just making sure there is 'enough output' is certainly required, but quality-wise what the criteria are of it being successful I don't know how it is defined.

    I think that you are on the right track with looking into this and noting where the structural 'loopholes' are that are perhaps leading to what you see
     
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  5. bobbler

    bobbler Senior Member (Voting Rights)

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    There may not have been in-house funding, but (I'd guess particularly where said research would be taking place at the institution) it may be that the general institutional support system for making said applications is providing help for them to get said funding. Having said that it is quite unusual for the topic itself to make a difference one way or the other on said support (admin-side) - which is likely to be linked to size of the application it would bring to the institution etc - academic freedom and all being a big part of things and if it were then I'd assume it would go through the academic side of department head etc and more likely to be due to viewing something as strategically important rather than about other things etc. I don't know if these result in 'x-funded centres or x-funded research' etc where the prestige and place that the research happens is the institution itself? these things can often comes with studentships or other jobs to go with it etc so it is, I think worth looking at what these things and individual applications actually are to work out how 'involved' the institution might be/see it as beneficial to them ie an institutional win.
     
    Snowdrop likes this.
  6. Hutan

    Hutan Moderator Staff Member

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    alktipping likes this.
  7. Marit @memhj

    Marit @memhj Established Member (Voting Rights)

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    noticed that too...:thumbsdown:: unamused: Cochrane refused to publish the IPD - protocoll. so, outside then, like descibed in the paper
    Larun L, Odgaard-Jensen J, Price JR, Brurberg KG. An abridged version of the Cochrane review of exercise therapy for chronic fatigue syndrome. Eur J Phys Rehabil Med. 2016;52(2):244-252.
    PubMed [https://pubmed.ncbi.nlm.nih.gov/26375519/]
     
    Trish, Sly Saint and Hutan like this.
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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    David Tuller on Facebook:

    Yesterday I received a thoughtful note from Professor Miek Jong of Norway's NAFKAM agency in response to a recent letter I'd sent her. The letter was about the effort by a leading Norwegian doctor to denigrate my work by calling me an “ME activist.”

    Today I sent Professor Jong the following answer:

    Dear Miek--
    Thanks so much for your gracious response. It's great that you've had experience at Berkeley and UCSF!

    I don't mind my work being mentioned in this debate. What I find disturbing is that Dr Flottorp and her colleagues apparently deride anyone opposing their views as an "activist," notwithstanding any professional and academic credentials or the merits of the issues raised. Moreover, they do so as if the word "activist" automatically disqualifies someone from having a legitimate perspective.

    When an intervention essentially tells patients that to acknowledge having an illness or symptoms or even negative thoughts represents a failure, it is self-evident that their responses to subjective questions about how they feel are likely to be infused with an unknown amount of bias. This should not be a controversial or confusing concept for experienced investigators to grasp, but apparently it is.

    Good luck holding down the fort in this debate!

    Best--David
    David Tuller, DrPH
    Senior Fellow in Public Health and Journalism
    Center for Global Public Health
    School of Public Health
    University of California, Berkeley

     
    alktipping, FMMM1, TiredSam and 15 others like this.
  9. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Sorry if I missed it, but did anyone actually submit a response to this to The Lancet? If so, have they had a response yet?
     
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  10. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I'll ask again. Were any of the responses and rebuttals (eg, @Jonathan Edwards , M Tack, @dave30th ) actually submitted to The Lancet, and did any receive a response?
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Not by me. I thought it would be more useful to write to the authors personally.
     
    Barry, MEMarge, Kalliope and 6 others like this.
  12. Mark Vink

    Mark Vink Established Member (Voting Rights)

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  13. Mark Vink

    Mark Vink Established Member (Voting Rights)

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    Also according to their guideline for authors, ”Letters for publication in the print journal must reach us within
    2 weeks of publication of the original item and should be no
    longer than 250 words.” With so many things in that article which are incorrect, it’s impossible to address that all in 250 words
     
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    Possible way round that a group of people to collaborate and each submit a letter covering one point
     
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  15. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Since it has passed two weeks after publication perhaps you can address all the points still but publish elsewhere. Perhaps Virology blog would offer you a space.
     
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  16. Mark Vink

    Mark Vink Established Member (Voting Rights)

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    That’s one possibility another possibility is publishing a review of their arguments elsewhere which is what we’ve done (published last week) and there is a thread about it on this forum here: https://www.s4me.info/threads/the-u...ls-for-me-cfs-2022-vink-and-vink-niese.27590/
     
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  17. Mark Vink

    Mark Vink Established Member (Voting Rights)

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    The problem is that you would need 15 letters or more and they would never publish that many in response to one article, especially if you know that the editor of that journal is a PACE trial supporter who states he is against bad science yet continues to ignore all the problems of that study
     
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  18. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Missense, Lilas, alktipping and 3 others like this.
  19. Barry

    Barry Senior Member (Voting Rights)

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    Yes please.
     
    Midnattsol likes this.
  20. Barry

    Barry Senior Member (Voting Rights)

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