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Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

Discussion in '2020 UK NICE ME/CFS Guideline' started by Three Chord Monty, Jul 11, 2023.

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Page 12 of 35
  1. Mark Vink

    Mark Vink Established Member (Voting Rights)

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    No Dutch Crawley, ie Elise M van de Putte, either
     
    Mark Vink, Jul 13, 2023
    #221
    MEMarge, Grigor, Hutan and 4 others like this.
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Let's just hope they publish it!
     
    adambeyoncelowe, Jul 13, 2023
    #222
    MSEsperanza, MEMarge, bobbler and 10 others like this.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Agreed.
    But, it's where the money is.
     
    DokaGirl, Jul 13, 2023
    #223
    bobbler, adambeyoncelowe, Peter Trewhitt and 1 other person like this.
  4. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Do we know how many of these signatories actually directly treat pwME these days? Or have ever?
     
    adambeyoncelowe, Jul 13, 2023
    #224
    MSEsperanza, Michelle, bobbler and 8 others like this.
  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    :thumbup:
     
    DokaGirl, Jul 13, 2023
    #225
    MEMarge, Peter Trewhitt and Sean like this.
  6. Trish

    Trish Moderator Staff Member

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    A good question. Also how many count themselves as treating ME/CFS who actually just do the diagnosis then pass the patient on to therapists to do the treatment and follow up, so never see the patient again?
     
    Trish, Jul 13, 2023
    #226
    MEMarge, JoanneS, bobbler and 10 others like this.
  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    :thumbup:
     
    DokaGirl, Jul 13, 2023
    #227
    adambeyoncelowe, Peter Trewhitt, Lou B Lou and 1 other person like this.
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Exactly.
     
    DokaGirl, Jul 13, 2023
    #228
    bobbler, adambeyoncelowe, Peter Trewhitt and 1 other person like this.
  9. Mark Vink

    Mark Vink Established Member (Voting Rights)

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    81
    Many have just put their name there to do a favour to their friends because if CBT fails for ME, then they are worried that it will also fail for FND and then their whole world of make belief will come tumbling down.
     
    Mark Vink, Jul 13, 2023
    #229
    MEMarge, JoanneS, Michelle and 19 others like this.
  10. Trish

    Trish Moderator Staff Member

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    There's also the whole edifice being built in the UK of CBT for every chronic disease, even the ones with clear diagnostic tests. Rona MossMorris and Trudie Chalder are doing trial after trial of CBT for everything chronic, and the whole CBT for MUS edifice is largely based on PACE, as far as I know.

    All castles built on sand.
     
    Trish, Jul 13, 2023
    #230
    MEMarge, JoanneS, Michelle and 18 others like this.
  11. Sean

    Sean Moderator Staff Member

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    Mutual protection racket.
     
    Sean, Jul 13, 2023
    #231
    MEMarge, bobbler, Solstice and 8 others like this.
  12. Adrian

    Adrian Administrator Staff Member

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    As a senior decision maker should his name be anonymized from documents? Normally individuals privacy is respected until a certain level where people are expected to be accountable for their actions.

    I wonder if on his application he put that NICE rated trials he was involved in as low or very low quality?
     
    Adrian, Jul 13, 2023
    #232
    MEMarge, Sean, bobbler and 6 others like this.
  13. Adrian

    Adrian Administrator Staff Member

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    The problem is the methodology on all are weak so if NICE has labeled some low quality then others should be as well.
     
    Adrian, Jul 13, 2023
    #233
    Sean, inox, Joan Crawford and 8 others like this.
  14. Adrian

    Adrian Administrator Staff Member

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    I was wondering how many of the authors had bothered to understand the literature and what the argument really is.
     
    Adrian, Jul 13, 2023
    #234
    MSEsperanza, MEMarge, Sean and 13 others like this.
  15. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    A comedy of anomalies?

    Nonsense and Insensitivity?
     
    Robert 1973, Jul 13, 2023
    #235
    MSEsperanza, Sean, Joan Crawford and 12 others like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Knoop and colleagues have also been doing something similar in the Netherlands.
     
    Last edited: Jul 13, 2023
    Dolphin, Jul 13, 2023
    #236
    Sean, bobbler, Joan Crawford and 7 others like this.
  17. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Robert 1973, Jul 13, 2023
    #237
    JoanneS, Sean, Michelle and 15 others like this.
  18. Wyva

    Wyva Senior Member (Voting Rights)

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    The BMJ: ME/CFS: Researchers question credibility of NICE guidance

    by Elisabeth Mahase, paywalled

    Guidance from the National Institute for Health and Care Excellence (NICE) on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed.

    More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence underlying the decision to stop recommending graded exercise therapy (GET) and recommending only cognitive behavioural therapy (CBT) for symptom management and distress.1 “The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability,” they wrote in the Journal of Neurology, Neurosurgery and Psychiatry.

    NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines.

    The institute produced its first CFS/ME guidance in …

    ----
    ​
    And another article in Pulse Today by Emma Wilkinson: Row reignites on NICE ME/CFS guidance as researchers question process
     
    Wyva, Jul 13, 2023
    #238
    MSEsperanza, Sean, bobbler and 7 others like this.
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Jul 13, 2023
    #239
    Sean, bobbler, Hutan and 7 others like this.
  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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    5,791
    Over the years, the BMJ have been good at posting e-letters from ME patients and the like (i.e. non professionals). Before social media there would often be lots and lots of comments. Best to avoid ad hominems and the like.
     
    Dolphin, Jul 13, 2023
    #240
    Sean, Joan Crawford, EzzieD and 7 others like this.
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