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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. John Mac

    John Mac Senior Member (Voting Rights)

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    539
    Split from:
    NICE ME/CFS guideline - draft published for consultation - 10th November 2020


    Updated NICE guidance on chronic fatigue syndrome

    https://www.bmj.com/content/371/bmj.m4774.full
     
    Last edited by a moderator: Dec 17, 2020
  2. Andy

    Andy Committee Member

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    Authors,
    1. Lynne Turner-Stokes, Northwick Park professor of rehabilitation,
    2. Derick T Wade, professor of neurological rehabilitation
     
  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    It's the BMJ editorial by Lynne Turner-Stokes & Derick T Wade.

    I have been expecting that some people will try to do a detailed critique of the evaluation applied by NICE and am curious to know what their arguments are.

    Unfortunately, it's paywalled and the preview just ends there.

    Also I think it would be interesting to know whether / how the evaluation methods differed this time compared to the previous assessment. Or were the methods just applied more thoroughly?
     
    Last edited: Dec 16, 2020
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    It never seemed to bother them that CFS was a heterogeneous condition when the recommended treatment was CBT and GET.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Lynne Turner Stokes has revealed her inability to grasp the issue of evidence quality. She once had good critical skills but critical skills tend to suffer when the topic is close to home. There is no evidence that NICE downgraded evidence because of the very obvious shortcomings of GRADE. More likely it found the evidence to be inadequate in rigorous terms. Nothing to do with a 'small number of service users'.

    The arguments Lynne provides for being more lenient in chronic conditions are transparently invalid - as I pointed out in my expert witness testimony. She says:

    Above all, it is time to recognise that person centred rehabilitation, delivered over an appropriate period, is much more likely to provide tangible benefits than the piecemeal, disjointed efforts that continue to be fostered by the current NICE guideline methods.

    But where is there a scrap of evidence for this? Randomised trials show that the effect is close to zero, especially when the y axis is displayed properly.
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    As I have said before, I do sometimes wish I tweeted, but then remember why I don't. But I don't mind being quoted.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think @dave30th ought to have something to say about this. It looks like serious political interference with the work of NICE by a 'small number of service providers' with vested interests!
     
    Anna H, hinterland, Amw66 and 35 others like this.
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Simon M, Robert 1973, Marky and 29 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    What an impertinent, insulting thing to publish by BMJ. By someone who is not even party to any of this, with a ridiculous conflict of interest being a rehabilitation specialist whining that an invalid rehabilitation paradigm has been discredited.

    More than anything this editorial is a whiny rant about the fact that their work cannot meet the standards of science and that this is unfair. It isn't. You are required to prove your claims in science. You cannot and never did. End of story. Being able to push it into practice without evidence means nothing. With time, reality always asserts itself and it finally did.

    Everything is about them, their little person, how it affects them. They cannot possibly think of the larger consequences of their navel-gazing. They take no consideration for the enormous harm they leave behind.

    Ignorant, impertinent and insulting. All normal things to publish in a medical journal. All very normal things by professionals.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Interestingly, LTS echoes Keith Geraghty's suggestion (as I did) that standard randminised controlled trials may not be the best way to asses therapist-delivered treatments. Unfortunately, what she suggests instead would be completely invalid.
     
    Simon M, epipnoia, Marky and 21 others like this.
  11. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Editorials
    Updated NICE guidance on chronic fatigue syndrome
    BMJ 2020; 371
    https://www.bmj.com/content/371/bmj.m4774

    References for the "overall positive results of randomised evidence published since 2007". [3, 4, 5]

    [3] = Cochrane review

    [4] = A systematic review from 2015 I havn't heard of before, published by Clinical Psychology Review

    [5] = PACE trial

    (Strange -- when I browsed the BMJ website for the complete issue, I somehow managed to see the editorial's full text, but when I now copy the corresponding link, it takes me to the paywalled version: https://www.bmj.com/content/371/bmj.m4774 )

    Edited for clarity.
     
    Last edited: Dec 16, 2020
  12. Barry

    Barry Senior Member (Voting Rights)

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    Maybe you should. Put the cat among the pigeons :).
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Should tweet or should be quoted?
    If I tweeted I think I would be sucked in by a Dementor for ever.
     
  14. Cheshire

    Cheshire Moderator Staff Member

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    I'd like to see any evidence supporting these claims, and obviously there can't be any, this is laughable and insulting, as it directly questions patients' integrity.
    This only prooves that she is a person with a deep contempt for patients and an absolute lack of understnading of what science and evidence are.
     
  15. Barry

    Barry Senior Member (Voting Rights)

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    Yes, I think you could be right.
     
  16. Barry

    Barry Senior Member (Voting Rights)

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    There are always outliers that frauds and quacks use to try and prove a general case. Which itself shows how little they comprehend.

    ETA: By this I mean that there will always be a small % of people who are not ill and seek to work the system, and if LTS and the like focus on people like this to try and "prove" a supposed point, it's just plain weird.
     
    Last edited: Dec 16, 2020
  17. Barry

    Barry Senior Member (Voting Rights)

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    Yes, service providers who services are relatively cheap, and thereby politically favoured, pushing clinical effectiveness much further down the priority list.
     
    cfsandmore, MEMarge, EzzieD and 8 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    An interesting thing about Turner Stokes's piece is that it contradicts itself.

    Firstly it says that there is evidence for the value of rehabilitative treatments.

    Then it points out that the methods used- randomised controlled trials - are not much use for conditions like ME/CFS.

    So there isn't any good evidence.

    Since NICE is supposed to recommend on the basis of good evidence it must have got things right.
     
  19. Hutan

    Hutan Moderator Staff Member

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    What I took away from that article:
    We will have to keep banging on about the natural course of post-viral fatigue syndrome/ME/CFS - most people recover in the first two years regardless of whether they receive treatment or not. Any statements about the impact of a treatment has to take this trend of natural recovery into account.

    We are right to push back against wording that tries to suggest that each person's illness is unique and therefore there needs to be experts with 'special indefinable knowledge' working out individual programmes that can never be measured in scientific trials. We are right to push back about the word 'complex'. At one level, every person with any kind of illness is unique, but that does not mean that there cannot be good, well-defined guidance on treatment.

    We need to keep highlighting the fact that the performance of clinics has been abysmal. Many patients drop out after a single session. Objective outcome measures don't improve. The reputation of these clinics in the patient community is abysmal. And this is in the context of an illness (or collection of illnesses) where there is a high rate of natural improvement in the early years - it should be easy to point to good outcomes. Yes, there should be better collection of data from clinics and followup.

    We need to think about this idea that it is just that the clinics haven't been funded well enough or resourced enough, that they haven't been able to work out, with patients of course, exactly what the patient needs and then deliver exactly the right mix of GET and CBT and whatever. It is difficult to counter the idea that 'we've never been resourced to deliver the ideal service (and the service only works when exactly the right mix of therapies is delivered to an individual), so give us your trust and a lot more funding, and we will be able to deliver some great results.' How to counter that?
     
    Last edited: Dec 17, 2020
  20. Hutan

    Hutan Moderator Staff Member

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    Oh, and this one. We can expect lots more tortured data analysis trying to suggest that subsets of patients (the ones who are too perfectionist, or too lazy or too fearful or has a mother who is too perfectionist etc) actually have done well with particular flavours of therapy.
     
    sebaaa, cfsandmore, MEMarge and 16 others like this.

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