NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

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

  1. Science For ME

    Science For ME Forum Announcements

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    Stakeholder submissions and NICE responses

    This thread is for discussion of the published tables of stakeholders submissions to the NICE ME/CFS guideline draft, which also include responses from NICE.

    The submissions were made by stakeholders in December 2020.

    These tables with both the stakeholder comments and NICE's response were published at the same time as publication of the NICE guideline, on 29th October 2021.

    https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-5

    https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4

    Some posts have been from this thread:
    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion
     
    Last edited by a moderator: Oct 30, 2021
  2. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I've just started reading some of the stakeholder feedback comments on the draft guideline. Shocking! I think the Mods may need to set up individual threads for some of the main stakeholder comments, for example a thread just for the Association of British Neurologists. I'm still reading their comments (as they are at the top of the list) and given that ME is accepted as a neurological condition their comments need to be unpicked on the forum (at some point in the future) and not lost in a general thread discussion. I am sure there are going to be other stakeholders whose comments we would want to examine in detail too, given that they are saying they didn't consider the draft guideline 'fit for purpose' and that NICE should redo it with a new committee (but I am still on page 2).

    https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses
     
  3. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Association of British neurologists (my bolding):

    “We are concerned by the recommendation to risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person. We are not aware of any clinical evidence to support this recommendation. The view of the ABN is that this recommendation is neither necessary nor practical to implement. We can think of no other situation in medical practice where every interaction with a patient would be “risk assessed” in any formal way (although doctors always consider the impact of their interactions on patients as part of standard good medical practice, as defined by GMC guidance). We are concerned that the requirement to undertake a risk assessment could become a barrier to patients accessing care. We believe that standard good medical practice, and patients’ existing right to decline any interaction with a health professional are sufficient to mitigate any potential risk.”

    This makes me so angry and sad. They have so little idea of what severe and very severe ME is. More than that, they don’t want to care.

    I was happy however to see the NICE committee’s response:

    “The committee agree this is good clinical practice and should happen routinely. This recommendation has been included based on Appendix 2 and the committee’s experience that health and social care professionals can underestimate the impact of interactions on people with severe or very severe ME/CFS.”
     
  4. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I think maybe NICE reading the stakeholder comments on the draft from organisations such as the ABN will have opened their eyes to the extreme prejudice PWME have faced, and just how much the condition has been misunderstood, maligned and neglected as well as patients being wrongly accused of being 'anti-psychiatry' and 'prejudiced against mental health sufferers'. I am starting to see why NICE took the exceptional decision to pause the publication and set up the 'round table' approach to deal with those stakeholders who wouldn't accept NICE's reasonable responses to them (as per the stakeholder feedback document).
     
    Last edited: Oct 30, 2021
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  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I am deliberately not reading any detail now in the middle of the night so as not to get too drawn in and rule out any chance of sleep, but I agree we need to look at this stakeholder feedback in detail, and consider how we can use this information to illustrate how little people, who ought to understand better, know about the reality of life with ME.
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Jan, ukxmrv, Robert 1973 and 22 others like this.
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    I wish I could see/read better, without it being more draining than it's probably worth - but it seems clear from the first few pages of the comments table that the association of british neurologists sees ME as nothing more than chronic fatigue (they appear to say as much in a few places, especially when objecting to diagnostic criteria, other than 'fatigue', as 'unnecessary').

    It also appears clear that they do not even understand the meaning of chronic fatigue, seeming to think of it as 'fatigue' only.

    Maybe Saturday - new specs on Saturday.
     
  8. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I think their statement that they see ME as a' disorder of the nervous system' is made in the context of Functional Neurological Disorder also being seen as this. It is in no way made as supporting the MEA 'purple book' in this regard.
     
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  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    Illuminating from @Simbindi ' s comments - ( notvread yet - just up for early morning getting of heat packs) neurology I believe were one of the disciplines on previous guideline consultation who could not see the sense of GET. Shows the power of propaganda since early 2000s.

    ETA The Scottish Neurological Survey is still open .
    I' ve highlighted on MEAction Scotlsnd's Facebook thread that folks should perhaps read the comments before taking part..
     
    Last edited: Oct 29, 2021
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  10. chrisb

    chrisb Senior Member (Voting Rights)

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    Trying to navigate around the documents I have been looking for the stakeholder feedback on the 4 August Guideline. That was surely still part of the procedure even if the legitimate issues which could be raised were supposedly limited. I cannot see that anywhere.Am I just missing it?

    This feedback could have informed any alterations made to the 4 August draftand should be available.

    EDIT and shouldn't the 4 August document also be included as part of the formal evidence base? In the interests of transparency.
     
    Last edited: Oct 29, 2021
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  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    If not included in the Guidelines package, hopefully some of this will come out as a result of the FOI requests submitted, but still outstanding.
     
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  12. Sean

    Sean Moderator Staff Member

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    There are whole careers and professorships in history and ethics to be had on investigating and telling the real story of this shabby brutal saga. Not joking.
    Use their own words back against them. Only seems fair.
     
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  13. Sarah

    Sarah Senior Member (Voting Rights)

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    There is also this excerpt from a comment from the Royal College of Physicians which appears supportive of the Lightning Process. It is part of larger comment on the types of exercise programmes the draft guideline recommended should not be offered, which starts on page 757 of Table 2. Bolding is mine.
     
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    and there is also evidence from case studies and one RCT that some patients report benefit from LP

    And Mrs Wentworth at the Tesco counter said so too. It must be true.
     
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  15. dave30th

    dave30th Senior Member (Voting Rights)

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    wow, I haven't looked through them all yet, but that's good to know!
     
  16. Brian Hughes

    Brian Hughes Senior Member (Voting Rights)

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    Absolutely stunned that the RCP should stand up for "osteopathy, life coaching or neurolinguistic processing"...
     
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  17. think_that_it_might

    think_that_it_might Senior Member (Voting Rights)

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    I feel like cfs "experts" have a tendency to support any old unevidenced woo when it comes to ME, largely because it discredits patients to see them involved with it. I have few conspiratorial leanings on this but i feel this one pretty strongly
     
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  18. Ash

    Ash Senior Member (Voting Rights)

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    It is my reasonable expectation that the Royal College of Physicians will come to regret inviting Phil Lightening Process Parker to join the feast.

    Having said that. Maybe they feared he could ‘step into’ their bodies if he wanted to, that he might be more likely to do so if they didn’t give him a piece of the pie?

    If so, maybe the potential down stream consequences were calculated and trumped by immediate threat.
     
    Last edited: Oct 30, 2021
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  19. think_that_it_might

    think_that_it_might Senior Member (Voting Rights)

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  20. anniekim

    anniekim Senior Member (Voting Rights)

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