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NICE guidelines: Final scope and equality impact assessment published

Discussion in 'General ME/CFS News' started by Andy, Oct 16, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    Just received notice that NICE have published their final scope for their review of the diagnosis and management guidelines.

    Final scope can be viewed here, https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope

    Stakeholder comments and responses from NICE can be viewed here, https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

    Both documents are PDF files so, depending on your computer/tablet/phone, may be viewable in your internet browser or may download.

    Equality impact assessment is available here, https://www.nice.org.uk/guidance/gid-ng10091/documents/equality-impact-assessment

    ETA: Updated the comments and responses URL.
    ETA 2: Added link to equality impact assessment.
     
    Last edited: Oct 16, 2018
    andypants, inox, Joh and 17 others like this.
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Interesting that NHS Somerset CCG seems to imply that ME is a problem with our auras!
    Page 312.

    Bizarre or what?
     
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  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    One of my responses was also garbled (p.344, Respect for ME (my own website)). It should read:
    It currently reads:
    Which is almost the exact opposite!

    I've raised it with my contact there.
     
    Last edited: Oct 16, 2018
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @Andy is it too late to link to Mark Vinks recent publication on problems with Cochrane (ie the bit on the CFQ) in the S4ME CFQ critique?
     
  5. Trish

    Trish Moderator Staff Member

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    Parts of the document sound quite promising:
    page 1
    page 2
     
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  6. Cheshire

    Cheshire Moderator Staff Member

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    The psychiatric hypothesis is not even aluded to in their aetiology paragraph...
    Weirdly, the tab where the reports opens up in my browser reads "schizophrenia guideline".
     
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  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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  8. Andy

    Andy Committee Member & Outreach

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    While obviously we can revise our document at any time, the opportunity for us to submit new items/revisions to NICE is past. Tagging @Carolyn Wilshire and @Graham as they are named authors of the document.
     
  9. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Same here, wonder what that's about? Hopefully someone just mistakenly copied the new page's format from an existing one on schizophrenia and forgot to change it, and not that NICE really thinks ME is psychiatric despite their not mentioning psychiatric hypotheses!
     
  10. Andy

    Andy Committee Member & Outreach

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    This would be my assumption too.
     
  11. Sean

    Sean Senior Member (Voting Rights)

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    o_Oo_Oo_O
     
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  12. Eagles

    Eagles Senior Member (Voting Rights)

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  13. Andy

    Andy Committee Member & Outreach

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  14. Sean

    Sean Senior Member (Voting Rights)

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    "since"?!?!

    Serious concerns/challenges/reports of the problems with the whole CBT & GET approach have been raised for decades. I knew of them by no later than about 1990. And that was pre-internet.
     
  15. Cheshire

    Cheshire Moderator Staff Member

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    This sounds encouraging:

    p. 164-165
     
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  16. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I'm actually feeling pretty positive about some of the NHS/clinic responses too.
     
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  17. Andy

    Andy Committee Member & Outreach

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    Proof that the Association of British Neurologists are more concerned for their livelihood rather than protecting patients from harm
    Well, as long as it works with MS then it's bound to work for us, obviously.....
     
  18. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Also, isn't a lot of the MS research copying the mistakes of ME research?

    I, too, was disappointed by their comment, and their implication that this is all because 'feelings run high'. It's patronising and diminishes the legitimate critiques of patients and scientists. It's a form of gaslighting, in effect.
     
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  19. Andy

    Andy Committee Member & Outreach

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    Not sure what the British Dietetic Association are on
    Anybody know what evidence there is for this?
     
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  20. Trish

    Trish Moderator Staff Member

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    Great to see Luis Nacul on the list.

    Do we know anything about any of the others?
     
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