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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. Sean

    Sean Moderator Staff Member

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    It's a fine line.

    Yeah, I am nervous about that too. With some honourable exceptions, the current batch of NHS 'specialists' are not fit for the purpose.
     
    Dolphin, alktipping, sebaaa and 17 others like this.
  2. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    PS I hugely enjoyed the comment in Jonathan Edwards' testimony about how every doctor should have learned in medical school that there are problems with unblinded trials with subjective outcomes. Savage.
     
  3. Andy

    Andy Committee Member

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    Woolie, hinterland, Dolphin and 20 others like this.
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    That is very good news. Better than expected. I smiled and then I laughed when I saw that LP was specifically recommended against. Good job stopping this before it got even worse.
     
  5. Hutan

    Hutan Moderator Staff Member

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    Re the SMC reaction:

    Crawley's endorsement of the Lightning Process made it very clear that the standard BPS trial approach of subjective outcomes and unblinded treatments could make even standing on a paper circle saying 'stop' look like a reasonable treatment. That Smile Trial should have removed any remaining belief that the PACE trial approach produced credible results - the nail in the coffin.

    Surely word must be getting around about Crawley and the rest? A guideline like this could not have happened without some people with 'establishment' power understanding.
     
    Ravn, alktipping, sebaaa and 23 others like this.
  6. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Re. the Science Media Center "experts" arguing that GET is evidence-based.

    The argument against CBT/GET is in part that it's not based on reliable evidence, not that there is no evidence. The CBT/GET supporters as usual simply pretend that nonspecific effects is not something they have to control for. The other argument against GET are the horrendous rates of harm reported in surveys.
     
  7. Andy

    Andy Committee Member

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  8. Andy

    Andy Committee Member

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    Seven hours or so after, as it turns out.

    Email from NICE:

    Dear Colleague,

    RE: Draft guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

    This draft guideline and its supporting evidence are now out for consultation.

    We hope that your organisation will submit comments on the draft guideline; it is a valuable opportunity to ensure that the guideline considers issues important to your members. The consultation page has all the information and documents you need to comment.

    The consultation will close at 5pm on 22/12/2020.

    We expect the guideline to be published on 21/04/2021. If your organisation submits comments and a signed confidentiality form, 2 weeks before publication we will send you the final guideline, along with comments from stakeholders, so you can let us know about any substantive errors.

    If you have any queries about this consultation, please contact cfs@nice.org.uk

    Kind regards,

    Katie Stafford

    Senior Guideline Coordinator
     
    Dolphin, mango, alktipping and 20 others like this.
  9. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Does that really leave enough time for people to submit responses to the consultation? Considering that a lot or the people wanting to submit responses suffer from ME...
     
    Wits_End, Dolphin, mango and 10 others like this.
  10. Andy

    Andy Committee Member

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    I suspect it's just their standard time period
     
  11. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Yes but is it enough?
     
  12. Andy

    Andy Committee Member

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    Well it will have to be as it's the time frame we have to work within. Would I, personally, want more time, to allow more pwME, whether on the forum or elsewhere, to consider the draft and submit a considered response - yes, of course. I have faith though that we, and the other stakeholders such as the MEA, AfME, MEAction, will be able to submit a response of some sort.
     
    janice, Dolphin, alktipping and 16 others like this.
  13. Andy

    Andy Committee Member

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  14. Adrian

    Adrian Administrator Staff Member

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    But its not because there evidence is meaningless and most of the world now knows and understands that. They relied on their status and networking skills to push the message to people who believed them and didn't look but once people look then trust is lost.
     
  15. Trish

    Trish Moderator Staff Member

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    Threads are being set up for comments on the detail of the draft guideline that will then feed into the forum's submission in response. The threads are listed in the second post on this thread. They are in the Members only Advocacy Planning forum.
     
  16. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    The only other issue to watch out for is the BPS lots efforts to rename ME and Chronic Fatigue Syndrome as MUS or FND. Once that happens the guidelines will no longer apply to the patient.
     
    Woolie, MEMarge, Wits_End and 23 others like this.
  17. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Really don't know much about this publication (draft guidelines). However, in general someone/working group is "selected" to look at the issue (prepare the policy paper); there is of course a context for the review --- concerns that the current guidelines ---. A report/document is prepared and I assume it is circulated so that the Minister etc. can prepare for the publication. At this stage, if the report is of concern, then it may be reviewed/revised! Think PESTLE here - political, economic, social, technological, legislation and environmental - i.e. to try to make sure the policy is sound. It is then made public i.e. consultation launched.

    In this case, if there is a push to distance the Government from GET & CBT (and this is in the public/consultation document) then you can't easily reverse your position - you'd need an "evidence base" to reverse your position. In effect you'd need the Government to decide that it does not accept the recommendations of the "independent" review panel --- not something you'd want to be doing regularly; so really only something to do if the Minister really wants it done --- sacred cow stuff.

    That of course ignores the human factors you are all to aware of - the reason the scientific method was developed in the first case!

    While a report that looks positive will generally be the "chosen path"; you'd be wise to respond to the consultation. The vested interests (CBT proponents who benefit from the paid work) and the sacred cows [these people just need to be got out of bed of a morning --- whatever] will respond to the consultation - those who are content generally don't --- democratic deficit. The person drafting the response to the consultation has to review all of the crap and come to the "right" answer --- you want to "help" them. E.g. if there are responses saying no evidence base for --- evidence of impaired energy production (undermining GET) --- then that "helps" the person drafting the response to the consultation --- final guidelines if you like. If you don't respond to the consultation then it can be awkward for the reviewer e.g. if the numbers don't look good - 90% of respondents supported CBT/GET means the reviewer has to point out that 70% got paid (vested interests - supporting status quo) while the other 20% did not provide supporting evidence ---.

    Folks on this forum are knowledgeable, so it should be possible to critically review the draft guidance --- if you're content then highlight that and why.

    Don't just let the Government off the hook i.e. for being nice to you (revising the guidance) --- what are they doing for you? E.g. the Longcovids need support and a long term strategy to understand and treat their illness --- like people with ME.
     
  18. Keela Too

    Keela Too Senior Member (Voting Rights)

    I second that.

    I’d also like to say that, in the absence of being able to get into discussions, I have found the various thoughts, experiences and opinions expressed on S4ME (& other online spaces where ME peeps gather) to be a real bonus. I’ll not comment further, but please know I am still following these threads closely. :)
     
    Forestvon, Woolie, janice and 47 others like this.
  19. Mike Dean

    Mike Dean Senior Member (Voting Rights)

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    Beat me to it. Leaving shapeshifting on one side, today is a good day.
     
    Woolie, Dolphin, alktipping and 19 others like this.
  20. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Having calmed down somewhat from the initial excitement, I tried to read through it more systematically.

    Initial impressions. The guideline is a major step forward. It's hard to find fault with it, even if some parts still sound very biopsychosocial. That should be adressed because one of my concerns is that CBT/GET proponents will try to insert a backdoor for CBT/GET into the guidelines. I see many references to the "the therapist" or "therapy" throughout the document, as if it was a given that therapists had a central role to play. Unless in the context of psychotherapy or physiotherapy, this should say ME specialist and treatment.
     
    Last edited: Nov 10, 2020
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