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BMJ editorial: Updated NICE Guideline on chronic fatigue syndrome, 2020, Stokes and Wade

Discussion in '2020 UK NICE ME/CFS Guideline' started by John Mac, Dec 16, 2020.

  1. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    I would suspect professor (9-5) is one of the bps lot
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think we can probably exclude that. P9-5 sounds like some sort of statistician or number cruncher who for some reason has a vested interest in healthcare finance. Maybe in a rather drudge job relieved by the excitement buying stocks in spare time. Possibly just bananas though.
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    my guess is P9-5 is related to Derick Wade.

    Of course Derick Wade is also a consultant at Oxford University hospitals, as is Michael Sharpe.
    https://www.ouh.nhs.uk/services/consultants/

    He did a webinar on Rehab and covid-19

    couple of slides:

    upload_2020-12-23_12-34-27.png

    upload_2020-12-23_12-38-0.png

    https://player.rcplondon.ac.uk/video/1_gkfag0cf
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  7. Simon M

    Simon M Senior Member (Voting Rights)

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    Merged thread

    Re: Updated NICE guidance on chronic fatigue syndrome (Hughes, Tuller, Racaniello)


    Apologies if this brillaint rapid response to the BMJ editorial by Profs Wade and Turner-Stokes has been posted already:
    https://www.bmj.com/content/371/bmj.m4774/rr-4

    Rapid response:
    Re: Updated NICE guidance on chronic fatigue syndrome

    Dear Editor

    The recent editorial from Professors Turner-Stokes and Wade about the new draft of clinical guidelines for ME/CFS from the National Institute for Health and Care Excellence (NICE) is problematic on multiple fronts. [1]

    ...
    The PACE investigators referred to their trial as the “definitive” test of their preferred approach to therapeutic intervention for this disabling illness. Lancet editor Richard Horton hailed the research that appeared in his journal as “remarkable” and “utterly impartial”. [3] No less an eminence than Professor Sir Simon Wessely, who was involved with PACE but was not a co-author, proclaimed it “a thing of beauty”. [4]

    Professor Wade himself declared the following about PACE in a statement released on his behalf by the Science Media Centre, a communications agency with close ties to the trial investigators: “Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any intervention in any condition. The trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence.” [5]
    ...

    The editorial’s main argument is that non-pharmacological treatments with multiple elements cannot be appropriately evaluated using the standard GRADE system. Trials of these therapies, the authors declare, are inevitably hampered by built-in limitations, such as the difficulty of blinding interventions and the need to use subjective outcomes in the absence of physiological measures. Whether or not GRADE is adequate for these kinds of non-pharmacological interventions, challenging the process and the rules after-the-fact raises questions about whether such protests are primarily principled or self-interested.

    ....
     
    Last edited by a moderator: Dec 24, 2020
  8. Simon M

    Simon M Senior Member (Voting Rights)

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    Other gems:

    Second, just because you believe that you cannot meet a high theoretical standard does not entitle you to demand that you be judged against a lower one. The fact that your research falls short does not make the theoretical standard less important. Nor does it magically infuse your efforts with robustness or diminish the need for reliable data in order to assess performance.

    ...

    By stating that the “rigid structure” of RCTs is inappropriate for testing the effectiveness of rehabilitative strategies involving CBT and GET, Professors Turner-Stokes and Wade are throwing the once-vaunted PACE trial and all related research under the bus. They are also demanding that the rest of us change our own positions about the importance of maintaining research standards. While stating that some people with the illness get better, they provide no reliable or valid evidence that their individualised rehabilitative approach has improved patients’ health more than, say, the passage of time on its own.
     
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    MSEsperanza, Amw66, Joh and 11 others like this.
  11. Barry

    Barry Senior Member (Voting Rights)

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    Interesting, then, that the 2011 PACE paper only claimed "(PACE): a randomised trial", and not a controlled trial, having backed off from their original protocol claim. So Wade was saying that PACE did not cut it as being "reliable evidence on safety and effectiveness" - he was right.
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There is no reason it is impossible to have an RCT where individual therapists personalise what they offer. And if different therapists take part in the one trial, one can look for "therapist effects" to see whether there was much variation in the outcomes between therapists. (From Tom K)

    This is a very important point. And very valid. It is perfectly possible to do trials in which every patient is treated on an individualised basis. I could even quote
    A double blind controlled trial of methylprednisolone infusions in systemiclupus erythematosus using individualised outcome assessment.
    Edwards JC, Snaith ML. Ann Rheum Dis. 1987 Oct;46(10):773-6

    where we did just that.

    Turner-Stokes was in our department at the time this was published!
     
  13. Graham

    Graham Senior Member (Voting Rights)

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    It frustrates me when such people expect us to accept small improvements in answers to questionnaires on health as evidence of efficacy, yet deny the accounts of large numbers of patients who insist that GET has harmed them.
     
    Ariel, Frankie, Ben McNevis and 38 others like this.
  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Especially when they reject this evidence of harm because such qualitative evidence is not acceptable, and then a paragraph later say that this type qualitative of evidence is exactly what we should accept if it supports their preferred intervention.
     
    MSEsperanza, Ariel, Hutan and 30 others like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Interesting point. Especially considering the underlying idea, the genesis of all this, the vainglorious biopsychosocial approach that promises up to 50% in savings when applying this formula to a large population, what became operationalized as IAPT. 50% of what? Nobody knows but it sounds impressive. Especially when exaggerating the costs of "MUS" by mixing up working age population with the entire population.

    Basically promoting two mutually exclusive benefits: it is tailored to the person but also applying it factory-style to a large population will yield significant savings. Of course none of this is "tailored" to anyone so the first point is more of a BS sales argument everyone knows is bunk. A point easily made by their own research showing an app version, as sausage-factory as it gets, is just as "good" as an expertly (more like expensively) trained therapist in that it delivers nothing better than a thorough (or not) reading of The Secret will yield. Or placing it under one's pillow, for all that it matters.

    In reality there is only the large numbers thing, where the sum of the small benefits to a large population is what makes it all cost-effective. Except it's in direct contradiction with the arguments made here, of a bespoke version to each individual, making it too hard to study (nevermind it doesn't), but also because the same recipe is applied to a large population on average it comes out on top with those much-vaunted enormous costs MUS represent.

    It's certainly hard to keep track of lies, especially when they are so casually thrown around. Here they clearly forgot the whole thing was sold to bigwigs based on the savings-with-large-numbers alone, not anything having to do with an individualized program that somehow makes it impossible to prove efficacy. Or more like they don't care much about contradicting themselves, it's not as if it ever got them in trouble.
     
    EzzieD, alktipping, tmrw and 9 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    another rapid response

    from Peter F Kemp
    https://www.bmj.com/rapid-responses...te_value_1&sort_order=DESC&items_per_page=200
     
  17. Trish

    Trish Moderator Staff Member

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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Reminds me of:

    Chico: “Naw. I dunna like it"

    Groucho:The first part of the party of the first part shall be known in this contract as the first part of the party of the first part shall be known in this contract-- Look, why should we quarrel about a thing like this? We'll take it right out, eh?”
     
    Last edited by a moderator: Aug 12, 2021
    EzzieD, ukxmrv, FMMM1 and 3 others like this.
  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Nut sure whether relevant, but I thought it's interesting that until the year 2015, both Lynne Turner-Stoke and Dereck T Wade were also Cochrane authors.[*]

    And there are these papers co-authored by Dereck T Wade and/or Lynne Turner-Stoke:

    Wade DT, Halligan PW. The biopsychosocial model of illness: a model whose time has come. Clin Rehabil. 2017 Aug;31(8):995-1004. doi: 10.1177/0269215517709890. PMID: 28730890.

    Thread here.

    Phillips M, Turner-Stokes L, Wade D, et al. Rehabilitation in the wake of COVID-19-A phoenix from the ashes. Br Soc Rehabil Med [Updated 2020 Apr 27; cited 2020 Dec 27].

    Thread here.


    [*] Cochrane reviews co-authored by Lynne Turner‐Stokes and/or Derick T Wade:

    Effectiveness of vocational rehabilitation intervention on the return to work and employment of persons with multiple sclerosis
    Fary Khan, Louisa Ng, Lynne Turner‐Stokes
    Intervention
    Review
    21 January 2009

    Exercise for people with peripheral neuropathy
    Claire Margaret White, Jane Pritchard, Lynne Turner‐Stokes
    Intervention
    Review
    18 October 2004


    Multidisciplinary care for Guillain‐Barré syndrome
    Fary Khan, Louisa Ng, Bhasker Amatya, Caroline Brand, Lynne Turner‐Stokes
    Intervention
    Review
    6 October 2010


    Multidisciplinary rehabilitation for adults with multiple sclerosis
    Fary Khan, Lynne Turner‐Stokes, Louisa Ng, Trevor Kilpatrick, Bhasker Amatya
    Intervention
    Review
    18 April 2007


    Multidisciplinary rehabilitation programmes following joint replacement at the hip and knee in chronic arthropathy
    Fary Khan, Louisa Ng, Senen Gonzalez, Tom Hale, Lynne Turner‐Stokes
    Intervention
    Review
    23 April 2008


    Multidisciplinary rehabilitation for follow‐up of women treated for breast cancer
    Fary Khan, Bhasker Amatya, Louisa Ng, Marina Demetrios, Nina Y Zhang, Lynne Turner-Stokes
    Intervention
    Review
    12 December 2012


    Multi‐disciplinary rehabilitation for acquired brain injury in adults of working age
    Lynne Turner‐Stokes, Anton Pick, Ajoy Nair, Peter B Disler, Derick T Wade
    Intervention
    Review
    22 December 2015
    • New search
    • Conclusions changed


    Multidisciplinary rehabilitation following botulinum toxin and other focal intramuscular treatment for post‐stroke spasticity
    Marina Demetrios, Fary Khan, Lynne Turner‐Stokes, Caroline Brand, Shane McSweeney
    Intervention
    Review
    5 June 2013


    Rehabilitation interventions for foot drop in neuromuscular disease
    Catherine M Sackley, Peter B Disler, Lynne Turner‐Stokes, Derick T Wade, Nicola Brittle, Thomas Hoppitt
    Intervention
    Review
    17 February 2015
    • Withdrawn

    Non pharmacological interventions for spasticity in multiple sclerosis
    Bhasker Amatya, Fary Khan, Loredana La Mantia, Marina Demetrios, Derick T Wade
    Intervention
    Review
    28 February 2013


    Services for helping acute stroke patients avoid hospital admission
    Peter Langhorne, Martin Dennis, Lalit Kalra, Sasha Shepperd, Derick T Wade, Charles DA Wolfe
    Intervention
    Review
    18 January 2012
    • Withdrawn
     
  20. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Oh yes, they're definitely empire builders.
     

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