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NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Nov 9, 2020.

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  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I would just download everything to be sure, but that's me!
     
  3. Barry

    Barry Senior Member (Voting Rights)

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    Interesting.

    Yes, just in case any "filtering" occurs in the process of NICE's archiving. If we have something ourselves, if any issues in the future we would have the confidence of knowing what really was.
     
  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I have PDFs of the stakeholder comments archived on my Dx Revision Watch site in this post:

    NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders
    MARCH 8, 2019

    https://dxrevisionwatch.com/2019/03...-24-november-2006-comments-from-stakeholders/

    Post #347 Shortlink: https://wp.me/pKrrB-4KP

    NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders

    Stakeholder List: Stakeholders_CFSME

    Comments on NICE version (in alphabetical order of stakeholder 575 pp): nice-version-table-of-comments2

    Comments on NICE version (in alphabetical order of stakeholder 220 pp): NICEversion-tableofcomments

    General comments from stakeholders (in alphabetical order of stakeholder 224 pp): General-tableofcomments

    Comments on Chapter 1 (in alphabetical order of stakeholder 152 pp): Chapter1-tableofcomments

    Comments on Chapter 2 (in alphabetical order of stakeholder 34 pp): Chapter2-tableofcomments

    Comments on Chapter 3 (in alphabetical order of stakeholder 18 pp): Chapter3-tableofcomments

    Comments on Chapter 4 (in alphabetical order of stakeholder 28 pp): Chapter4-tableofcomments

    Comments on Chapter 5 (in alphabetical order of stakeholder 103 pp): Chapter5-tableofcomments

    Comments on Chapter 6 (in alphabetical order of stakeholder 171 pp): Chapter6-tableofcomments

    Comments on Chapter 7 (in alphabetical order of stakeholder 25 pp): Chapter7-tableofcomments

    Comments on the Appendices (in alphabetical order of stakeholder 13 pp): Appendices-tableofcomments


    A selection of points the Barts CF Service made during the development of the NICE Guidelines for CFS/ME [CG53 2007] extracted by Tom Kindlon can be found in this September 2007 post on my ME agenda site:

    https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/
     
    Last edited: Aug 7, 2021
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Trial by Error by David Tuller Three CBT/GET Proponents Quit NICE ME/CFS Guidance Panel as Publication Date Nears

    Quote:
    These resignations immediately before publication should have been expected. Like former President Trump, members of the CBT/GET ideological brigades have shown themselves to be sore losers. They appear to believe that decisions not aligned with their beliefs and assertions are illegitimate for one or some other claimed reason—most often having to do with the purportedly sinister influence of anti-scientific patients.
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    It is also notable that the 3 resignations were all from the very specific BPS contingent. If there were something fundamentally broken with the NICE process, then I think the resignations would have been from a wider group.
     
  7. TiredSam

    TiredSam Committee Member

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  8. Barry

    Barry Senior Member (Voting Rights)

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    I'd read right across that several times before spotting the superfluous "be".
     
    MEMarge and TiredSam like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    It appears the "conflict of interest" regarding Dr. Shepherd's role in the NICE Committee and MEA is that he is correctly not in favor of GET and CBT as treatments for ME, as there is no scientific evidence GET and CBT cure ME.

    Dr. Shepherd's sound scientific knowledge conflicts with that of the beliefs of the BPS crowd, which is where we all know the real issue or conflict of interest is.

    This standing down of Dr. Shepherd for a mis-perceived conflict of interest is concerning.

    In the interest of fairness and equity, those making money from using GET and CBT for ME should also have been stood down.

    ETA: changed "if" to "of"
     
    Last edited: Aug 8, 2021
  10. Wonko

    Wonko Senior Member (Voting Rights)

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    IMO their conflict of interests should have been seen, before the start, and they should never have been stood up.

    But then I'm not NICE.
     
  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    We had discussed this at the stage of the committee being established and it does appear that conflict of interest is defined by NICE differently for those involved in advocacy work and the charity sector than it is for those working within the British NHS or universities, much tighter restrictions being imposed on the former than the latter.

    There had even been discussion of this in relation to Dr Shepherd’s role with the MEA which was why he was made a non voting committee member, so it is hard to see what has changed recently. His role has always included responding to social media posts/comments.

    I expect this represents the slow adjustment of NICE to including patients and patient advocates in their attempt to move on from being just a dispenser of medical edicts.
     
  12. Andy

    Andy Committee Member

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    Trial By Error: The Times Fact-Checks BMJ on NICE Committee; My Letter to BMJ’s Fiona Godlee

    "It is not often that a major news organization fact-checks BMJ, a leading medical publisher, in real time. But that’s what happened last week when The Times pushed back against biased BMJ reporting about the committee charged by the UK’s National Institute for Health and Care Excellence (NICE) with developing a new clinical guidance for ME/CFS. This isn’t the first time The Times has seen through the propaganda campaign emanating from those with financial and reputational interests in maintaining the GET/CBT approach despite widespread rejection of its theoretical and scientific underpinnings.

    As I noted previously, the BMJ article, published August 3rd, presented quite a stupid line of argumentation—namely, that the draft NICE guidance published last November was developed without sufficient reliance on the available evidence. Sean O’Neill, a Times reporter whose previous work has demonstrated a more nuanced appreciation of ME/CFS issues than is common among his peers, countered such claims in a piece published the next day. The final version of the guidance is scheduled to be released next week. Perhaps other members of the UK press will follow the Times‘ lead and stop believing everything they read about ME/CFS in major medical journals and in press releases from the likes of London’s Science Media Centre."

    https://www.virology.ws/2021/08/10/...ice-committee-my-letter-to-bmjs-fiona-godlee/
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    Excellent, as always.
     
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  14. Andy

    Andy Committee Member

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    Journalists covering ME/CFS: Don’t ask about the new NICE guideline, ask about the old one

    "To fully understand the future, it is important to know the past.

    Next week, we finally get to see that long awaited new NICE treatment guideline for ME/CFS. As regular readers will know, all indications so far suggest the new guideline will be dramatically different from the old one. Graded Exercise Therapy is set to be expunged entirely, while Cognitive Behavioural Therapy is no longer to be used as “treatment” for ME/CFS, but instead is to be recommended as psychological support for people’s mental health and well-being.

    By extension, the so-called “science” of so-called “psychogenic illness” is on the verge of being discredited. The whole transition amounts to nothing less than a paradigm shift in what has long been a contentious area of medicine.

    Of course, there has been pushback from some quarters. Recently I described a highly partisan news story that appeared in the BMJ. The BMJ journalist appeared genuinely confused as to why the old guidelines had to be changed at all. As they wrote:

    In 2007, NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a “lack of evidence for the effectiveness of these interventions.” It is unclear, however, how the evidence became unsupportive.

    I anticipate that this line — “it is unclear how the evidence became unsupportive” — will be the preferred narrative used by those who wish to discredit the new guideline when it is published next week.

    For defenders of the status quo, it’s always about narrative. That is because when evidence and logic evaporate, narrative is all you have."

    https://thesciencebit.net/2021/08/1...the-new-nice-guideline-ask-about-the-old-one/
     
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  15. Trish

    Trish Moderator Staff Member

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    That is such a good article. I hope it will be widely circulated to journalists covering the new guideline.
     
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  16. Sean

    Sean Moderator Staff Member

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    That is because when evidence and logic evaporate, narrative is all you have.

    This.
     
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  17. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Of course, the usual suspects will have an armada of eminent 'experts' who will try to defend their CBT-and-exercise-always-helps-especially-in-functional-illness-narrative, mixed with narratives along the lines of 'no trial is perfect' and 'if blinding is not possible in clinical trials, we have to turn a blind eye to the otherwise required standards of assessing evidence'.

    I think it might be important to be able to factually argue in detail with respect to the evaluation of the quality of evidence: What are the weaknesses of GRADE and how can it be used to either sift non-robust evidence out or to let it pass?

    References to Michiel Tack's and Jonthan Edwards' responses might be useful in this regard:

    https://www.bmj.com/content/371/bmj.m4774/rr-9

    https://www.bmj.com/content/371/bmj.m4774/rr-8

    One thing that it seems hasn't been addressed in the criticism of Torjesen's recent 'exclusive' BMJ news article is that the author refers to the Busse et al critique of the NICE draft as "the architects" of GRADE, whereas in their response it was explicitly stated that "it is not an official communication from the GRADE Working Group" [1].

    It's also interesting that two of the eleven authors of the response aren't members of the GRADE working group:
    Signe Agnes Flottorp and Paul Garner.

    Another point is that Torjesen in her recent article double-references an argument of Turner-Stokes/Wade response, and does that without making clear that this is a quote.

    Turner-Stokes/ Wade in their BMJ editorial 16.12.2020:

    "[...] the new draft emphasises the potential harms of exercise, based on qualitative evidence provided by a small number of service users, and the balance has shifted towards helping patients to adjust to the long term debilitating effects of CFS/ME." [2]

    Torjesen turns that opinion into a fact, referencing to the source, but not putting the quote into quotation marks:

    "The draft update also emphasises the potential harms
    of exercise, based on qualitative evidence provided
    by a small number of service users, and the
    importance of helping patients to adjust to the long
    term debilitating effects of ME/CFS".[3]

    And then she goes on to reference Busse et al without making it clear that they criticized Turner/Stoke with the exception of the rejection of the draft guideline's conclusions and the one point about the "small number of service users" that still wasn't factual.

    Busse et al:

    "They have, however - with the exception of one sentence – made the wrong attribution of the source of the problem. The authors note, correctly that 'the new draft is based on qualitative evidence provided by a small number of service users'." [1]

    And that's what Torjesen makes of it when she cites the quote again two paragraphs later, again without putting it in quotation marks:

    "The NICE guideline development process uses the
    GRADE system to assess the quality and strength of
    evidence. The architects of this system have
    suggested that there was 'a disastrous misapplication
    of GRADE methodology,' with conclusions about the
    potential harms of exercise overemphasising
    qualitative evidence from a small number of service
    users."[3]

    [1] Busse et al, https://www.bmj.com/content/371/bmj.m4774/rr-7 ; S4ME thread here.

    [2] Turner-Stokes/Wade, https://www.bmj.com/content/371/bmj.m4774

    [3] Torjesen, https://www.bmj.com/content/374/bmj.n1937

    Edited for clarity.
     
    Last edited: Aug 11, 2021
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  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Indeed. I wasn't aware of that part of NICE's history.

    Thank you @Brian Hughes .

    I hope it's OK to quote a bit more from Brian Hughes' article.

    About the old (2007) NICE guidelines' evaluation of the then small evidence base:
    Edited for clarity.
     
    Last edited: Aug 11, 2021
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There is an interesting answer to this, maybe - the evidence became unsupportive because in the intervening period there was the 'definitive' PACE trial - which was unsupportive.

    In 2007 the 'evidence' was based on some small inconclusive studies. By 2020 we had seen a large multi-arm trial show that almost certainly CBT and GET had no useful effect and if there was any it was trivial and unsustained. The authors had to truncate the Y axis to make any apparent difference visible and that difference was well below what would be predicted on the basis of other studies (e.g. rituximab phase 2, antivirals) from expectation bias alone.
     
  20. Trish

    Trish Moderator Staff Member

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    I had not come across the history of the difference between what the same reviewers published and what they told NICE about the same research back in 2007. Would it be possible to find out what brief NICE gave the reviewers for their review for the 2007 guideline? Could the NICE committee, which I understand was stacked with BPS people, have told them to leave out all their criticisms of trial methodology and just present results taken at face value in their report?
     
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