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FOI Documents relating to NICE response to the US IOM report on ME/CFS in 2015

Discussion in '2020 UK NICE ME/CFS Guideline' started by Sly Saint, Nov 16, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Suffolkres, Kitty, Ariel and 3 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

    Thanks. I don't remember seeing that before. These were the bits I found most interesting.








    edit to reduce the chance of confusion:

    p27 Appendix to this meeting on p31.




    Last edited: Nov 17, 2021
    Barry, Medfeb, Hutan and 6 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    Reading the exchanges between people closely involved makes one realise just how disingenuous the suggestion was that the 2021 guideline committee had plucked a new disease out of thin air just to spoil the evidence.
    Joh, ME/CFS Skeptic, Trish and 20 others like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

    That was something my excerpts probably downplay - there were quite a lot about how changing views on how the condition is best diagnosed were likely to be important, with these comments being scattered through sections I found less interesting, but that others could be most interested in.
    Last edited: Nov 16, 2021
    Trish, Barry, Hutan and 5 others like this.
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    It also suggests NICE knew that the criteria might need to be changed and that evidence would have to be downgraded if these new criteria were adopted, regardless of who sat on the committee.
    Last edited by a moderator: Jan 5, 2023
    Kirsten, Barry, Medfeb and 10 others like this.
  7. Ariel

    Ariel Senior Member (Voting Rights)

    Where did this suggestion that NICE have invented a new condition (as repeated by TK in the docs) come from? I have only seen stuff like that from Sharpe, who is saying it for obvious reasons. Has anyone been convinced by this as opposed to merely stating it disingenuously, and why was this position advocated so strongly in the NHS E&I materials? It's quite a shocking thing to claim (eg about the committee and their process) especially if you expect people to listen to you after that.

    There is such a gulf between what people say about the illness and what the illness actually is that I find myself not knowing how much of what they say is wholly disingenuous BS, and how much of it genuinely rests on a mistaken foundation/conception of the illness with additional self-serving BS on top of that. Perhaps there is no difference.

    From these documents the disingenuousness is steeped through, but I don't understand what is animating much of it from certain quarters; perhaps I find it hard to fathom spending my career making life more difficult for sick people.

    Edit: once you subtract the arguments of a very small group of people defending their own work with extremely weak arguments, what is left?
    Hutan, EzzieD, MEMarge and 8 others like this.
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    It has the hallmarks of Oxford about it. A presumption that nobody else has a valid opinion and that nobody will notice the preposterous nature of the claim - other than people who do not matter.
    LilyHBopp, MEMarge, EzzieD and 10 others like this.
  9. Mithriel

    Mithriel Senior Member (Voting Rights)

    What surprises me is the offhand references to some patients claiming they are harmed by the treatments. Why did no one care enough to see if it was true? Many treatments cause harm to some people but the risks are examined and minimised and patients must be told about them. We feel like the dirt beneath their feet because that it how they treat us.

    Some of the money wasted on useless trials could have been used to find out if any patients did get harmed but there was no interest in doing anything about it.

    They are so in love with their theories they refuse to believe there are any flaws in them and they don't believe patients can be trusted to know their own disease so why trust them when doing so would cost you.
    Jan, Kirsten, SNT Gatchaman and 15 others like this.
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

  11. chrisb

    chrisb Senior Member (Voting Rights)

    That Surveillance Management Catch-up of September 2015 is rather hard to evaluate. It seems short of context. Do we know what this is and whether it is an ad hoc group or permanent?
    Last edited by a moderator: Nov 18, 2021
    MEMarge likes this.
  12. Lucibee

    Lucibee Senior Member (Voting Rights)

    This post is replying to a post the poster has deleted.

    From the documents, SW is more likely to be Sarah Willett.
    Last edited by a moderator: Nov 18, 2021
    Trish, MEMarge, EzzieD and 4 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

    It's pretty shocking to see a frank admission that there has been no progress in decades, no prospect of helping anyone or changing the situation any time soon, followed immediately by: "let's not do anything, though".

    This is criminal neglect, knowing that people under your responsibility are suffering and being unwilling to do anything about it. Nothing surprising but the complete indifference to human life is still so monstrous when it's just laid bare like that. They truly don't give a damn about patients, can't even pretend to care.
  14. Esther12

    Esther12 Senior Member (Voting Rights)

    I might add a note about that.
    adambeyoncelowe likes this.
  15. Kirsten

    Kirsten Established Member (Voting Rights)

    Is it just me or do they sound confused about the underlying premise of GET/CBT being fear avoidance to deconditioning model. They say a couple times they don't know why people are rejecting GET/CBT because of this model, when they make no mention of fear avoidance in their guideline about it. Surely they know that's why GET/CBT is prescribed, that's the theory behind it, the whole point of it? If there is no fear avoidance model, there's no point in GET/CBT... Have i got that wrong? (There's every chance i might have... )
  16. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Agree. There is this section of NICE's review of the US Documents that states (page 32 in the pdf):

    "Taken together these three reports may have important implications for the CFS/ME guideline. [...] The new criteria may affect the interpretation of all preceding evidence that may have used different inclusion criteria for study participants.

    Amw66, Simbindi, Barry and 1 other person like this.

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