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What Can We Expect from the Current Review of NICE Guideline CG53 - Nancy Blake

Discussion in 'General ME/CFS News' started by Sly Saint, Aug 6, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Not sure if this has been posted anywhere.
    The link was included in one of the comments on David Tullers latest blog about Mayo.
    "
    The Guideline Process

    The National Institute for Health and Care Excellence Surveillance report 2017 - Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53, Surveillance decision, last updated September 20, 2017 [1], promises ‘a full update with a modified scope of the guideline CG53’. [1] This is the review which is the subject of this article. I hope to continue to follow the progress of the process in subsequent articles between now and September 2020, when the revised guideline is to be published.

    This report provides links to the reason for the decision, summaries of evidence presented by stakeholder consultations, new evidence, stakeholders comments, and further information about the process involved in developing guidelines, all of which shed light on the benefits and shortcomings of the review process, and allow the reader to make certain predictions about what is likely to happen, and what would have to happen in order for real change to take place."

    http://www.positivehealth.com/artic...rom-the-current-review-of-nice-guideline-cg53

    @Nancy Blake
     
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  2. Trish

    Trish Moderator Staff Member

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    That's a depressing read.

    One problem with NICE guidelines that @Nancy Blake points out is that the focus for NICE is on treatment. So the studies they look at for evidence are randomised controlled trials of treatments, not biomedical studies of the underlying biochemistry. That means that most if not all of the 'science' they look at will be BPS trials. If they don't read the full papers and understand the fundamental design flaws that make these trials unsound, we have a big problem.
     
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  3. Adrian

    Adrian Administrator

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    I don't think we can expect much from the guidelines but the removal of GET/CBT and some improved guidance on managing patients with long term chronic conditions would be good.

    One of the reasons in our r response to the scope document we spent a lot of effort questioning their proposal to use subjective measures was to try to ensure they look properly at BPS trials rather than accepting them at face value.
     
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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    Now that we know that Wessely, Hotopf and Sharpe are capable of completely misinterpreting a senior academic, and apparently no-one notices for twenty years, nothing should ever be taken at face value again.
     
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  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Which one this time?
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    Have to be especially careful to ensure NICE do not buy into the PACE authors' pseudo-argument that CBT/GET are valid because it is "the best we currently have". The best chance I have of suddenly getting a £100K+ 'windfall' would be to fall under a bus, but doesn't make it sane or valid. "The best we currently have" can so easily sound like a caring and rational argument, but is in truth complete BS if it is at best nothing, and in truth significantly worse than nothing. And moreover, that worse-than-nothing costs the NHS dearly anyway, quite apart from the human costs. Hopefully NICE will realise this. Has anyone done any analysis of what the real financial burden might be of applying CBT/GET to PwME, both direct costs, and more importantly the indirect consequential costs? Being as cost-effectiveness of treatments key to NICE's remit, is that something they might sit up and take notice of? Or am I just way behind the times here?
     
  7. Andy

    Andy Committee Member & Outreach

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    Currently, this would be pretty hard to calculate wouldn't it? To do so you would need to know the average recovery and deterioration rates of not doing CBT/GET, compared to doing CBT/GET, and I'm not sure anybody would have done this sort of study - happy to be corrected though.
     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    McCrone et 2012 PACE Trial paper looked at it for PACE Trial data.
     
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    ,
    Oh, dear, what a give-away. You haven't been following the other thread!

    https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-5#post-94237

    I hope this link works because I don't have a clue as how it should be done, and will forget instantly if any helpful person tries to tell me.

    They seem to think that not only was it the opinion of Rachel Jenkins (now Professor Emeritas of Epidemiology and Mental Health at Kings but formerly Principal Medical officer for Mental Health at the Department of Health from 1988-1996) that, in respect of the LA and Royal Free epidemics, "the majority of cases were a hysterical reaction to a small number of poliomyelitis cases amongst the staff", but that "this conclusion seems the most reasonable".

    Jenkins did indeed write that, but only in summarising the views of Donald Acheson. Acheson was merely setting that up as a strawman before knocking it down. Like Acheson,Jenkins appears to be opposed to this view, but readers of Chronic Fatigue and its syndromes-I suppose there must have been some- would be non the wiser.

    We are however left with the valuable information that Wessely, Hotopf and Sharpe apparently think the most reasonable explanation for most of the cases in those epidemics was a "hysterical reaction".
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    It was just a thought.
     
  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thanks. I hadn't read that other thread, but will do.
     
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  12. Andy

    Andy Committee Member & Outreach

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    Please don't take my response as suggesting it was a bad thought, it was more me thinking out loud how to achieve it. It could be extremely valuable to do this sort of study, in their latest member's magazine the MEA state "Most people with ME will make some degree of improvement over time. However, a significant minority remain permanently and severely affected." - without the kind of study we are discussing I would suggest this sort of statement is potentially misleading.
     
  13. Barry

    Barry Senior Member (Voting Rights)

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    No problem :). My thinking was that, no matter how much we know and understand the human costs of ME, whether we like it or not it is the financial costs that probably influences NICE the most. Up until now it is the BPS crew who have convinced NICE that their CBT/GET approach is the most cost effective; to have a decent chance of overturning that we presumably need a viable counter-argument - and by that I mean viable in their eyes, not just ours. If you're about to be eaten by a crocodile it's no use telling it not to because you're a really nice person and don't deserve to die, and you have children who need you - it'll just say "You have children? Really? Where are they!" It needs convincing that eating you or your children would be such a bad idea.
     
    Last edited: Aug 7, 2018
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  14. Andy

    Andy Committee Member & Outreach

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    Couldn't agree more with this. Especially nowadays with austerity and ever-increasing financial pressure on the NHS it might well be the financial argument is the crucial one.
     
  15. Barry

    Barry Senior Member (Voting Rights)

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    Yep. If they could be convinced the current approach is seriously financially unsound that would likely be a tipping point; not just the headline costs but maybe the hidden but nonetheless very real costs. Is there any particular stage of the guideline development process that financial aspects are particularly investigated? Or is it just melded with all the other discussions?
     
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  16. Wonko

    Wonko Senior Member (Voting Rights)

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    It seems clear, at least to me, that they don't give a stuff about "hidden" costs, as they are not assessed on these, they aren't in any of their "budgets". Evidence for this can be clearly seen in the current NHS vs social care crisis, if it doesn't come directly out of their budget it's someone else's problem, even if as a result of this attitude it causes their services to collapse.
     
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  17. Andy

    Andy Committee Member & Outreach

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    NICE's process for looking at economic impacts on a guideline can be read here, https://www.nice.org.uk/process/pmg20/chapter/incorporating-economic-evaluation

    In that specific example, social care costs are the responsibility of local government, not the NHS.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Interesting that NICE link includes:
     
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Social value judgements priniciples for the development of NICE guidance

    https://www.nice.org.uk/Media/Defau...ples-for-the-development-of-NICE-guidance.pdf
    just having a read; could be useful down the line(?) for those involved.

    eta: page 8
    "
    Non-maleficence involves an obligation not to inflict harm (either physical or
    psychological) and is associated with the maxim ‘first, do no harm’. As any
    treatment or intervention can potentially have adverse consequences, it may
    be necessary to balance the benefits and harms when deciding whether an
    intervention is appropriate."
     
    Last edited: Aug 7, 2018
  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Can somebody think of examples of what they are referring to in the bits in bold e.g. what would take precedence over economics?
     

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