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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. Gecko

    Gecko Senior Member (Voting Rights)

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    NICE have refused to include DWP under "Who the guideline is for". This was asked for by quite a few orgs.
    Here's their reasoning:
    Edit: Even the RCGP & Royal College of OTs asked for DWP to be included.
     
    Last edited: Oct 16, 2018
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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  3. Andy

    Andy Committee Member & Outreach

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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  5. Gecko

    Gecko Senior Member (Voting Rights)

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    The Royal College of Pediatrics & Child Health have written:

    I really hope the non-BPSers can steer the committee away from this want to dilute the guideline to include all sorts of other conditions.
     
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Tony Crouch is a really good egg who knows personally at the coalface......
     
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  8. Andy

    Andy Committee Member & Outreach

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  9. Sean

    Sean Senior Member (Voting Rights)

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    Same here. Although a lot of it is standard bureaucratic responses, it largely falls on the right side, IMHO.

    However, the proof will be in the final document. A lot of water to flow under the bridge until then, and the make up of the panel is not ideal.

    We shall see.

    Yes, but we already knew that. ;)

    --------------------------

    From the Royal College of Psychiatrists:

    Gee, I can't imagine why ME/CFS patients would have higher suicide rates, and why that would be.

    (Interesting to note that they use ME/CFS, instead of their usual CFS/ME.)

    So, no change in your position then? Continue rolling out your lucrative woo-woo across the land.
     
    Last edited: Oct 17, 2018
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  10. Inara

    Inara Senior Member (Voting Rights)

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    But "they" see that as a symptom of a primary depressive or anxiety disorder, not as a sign of despair due to a disabling, life altering, financial existence endangering disease.
     
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  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Nor is suicide ever seen as the pragmatic and considered decision, of an individual abandoned into an unbearable & physically horrendous situation, with no way out, nor hope for one in the future!
     
  12. JemPD

    JemPD Senior Member (Voting Rights)

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    Indeed. Its not suicide its self administered euthanasia. TBH the only thing that is keeping me around is the fact that i know several people would be badly traumatised if i went, & 2 of them are children, which is unacceptable to me. I live on, endure on because of my love for, & desire to protect, them. And I'm not even at the very severe end.
    The PCP, NICE, & the entire medical & political establishment, could do masses to reduce the self administered euthanasia rate among PwME.... by simply giving us the compassionate care & support that people with comparable, recognised as organic diseases receive, and removing the continuous spectre of being kidnapped & tortured & made even sicker in a mental institution like Karina, Sophia, Bob, and so many others, when they section people for deteriorating after the bogus treatments they are being repeatedly informed will make people deteriorate.

    Their hubris & obtuseness are major parts of the problem.
     
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  13. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Sadly that is correct. A phrase worth remembering. Xx
     
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  14. Andy

    Andy Committee Member & Outreach

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    Comment from Action for ME
    https://www.actionforme.org.uk/news/​nice-guideline-scope-and-committeeupdate-and-comment/
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    "What kind of emotional despair lead an otherwise happy person to jump out of a burning building? Surely smoke and intense heat are secondary to such a horrific act which must be interpreted from a psychosocial lens and unreasonable expectations of ambient heat and air particulates."
     
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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  17. Gecko

    Gecko Senior Member (Voting Rights)

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    Analysis from #MEAction (of the documents released, not committee appointments)

    https://www.meaction.net/2018/10/25/nice-final-scope-read-our-analysis/

     
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  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    This bothers me. They picked a paper that is quite contrary to the point I have been and keep trying to make -- that there are some MS clinicians and researchers emphasizing the importance of differentiating between different types of fatigue and fatigability and developing objective measures (see below* and here ).

    Instead the Pöttgen et al paper didn't specify which kind of fatigue they are refering to. Plus: "The primary outcome was the Chalder Fatigue Scale."

    It would be interesting to know whether there are some more reasonable neuologists having some influence within the Association of British Neurologist who could point their colleagues to this contradiction.

    However, when I searched Cochrane's and the NICE guidelines's sources on fatigue in MS, I got the impression that in this field the reasonable researchers are a tiny minority, too...

    * From S4ME's comment on the NICE guidline's draft scope document:
    A quick search for "measure" and "measuring" in the current scope document showed no mentions.

    I understand your irony and I'm aware that fatigue related to other illnesses might have nothing or few in common with ME related impairments. My point in referring to MS research was that there seem to be at least some reasonable researchers regarding the need of differentiating fatigue and applying objective measurements.
    (Sorry, I am repeating myself -- will have a break now.)
     
    Last edited: Oct 26, 2018
  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    bump
     
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  20. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    Merged thread

    https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

    It's a good read if you're well enough (I've only read bits of it). I noticed that Royal United Hospitals Bath NHS Foundation Trust on page 95 said:

    The study seems to be this: https://www.ncbi.nlm.nih.gov/pubmed/22385683 - Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial.

    A long time? Try decades or even a life time. I think this needs to be clarified. Does anyone have data on recovery rates including how they defined recovery?
     
    Last edited by a moderator: Feb 7, 2020
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