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David Tuller interviews Adam Lowe about his experience as a lay member of the NICE ME/CFS guideline committee

Discussion in '2020 UK NICE ME/CFS Guideline' started by Andy, Nov 26, 2021.

  1. Andy

    Andy Committee Member

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    Last edited by a moderator: Nov 29, 2021
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  2. Sean

    Sean Moderator Staff Member

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    Will that be going up on YouTube?
     
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  3. Trish

    Trish Moderator Staff Member

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    Thank you, @adambeyoncelowe and @dave30th for that fascinating interview. It was very interesting to hear about how the NICE process worked, and how the guideline committee, with such disparate views represented, managed to pull together a pretty good guideline.
     
  4. Andy

    Andy Committee Member

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    One of the many interesting bits to hear was regarding the analysis of the various criteria that they did, due to the way that it is structured, ICC and CCC could actually draw more people into an ME diagnosis than the IOM criteria. It was good to hear that my misgivings of the ICC as the one, true, definition for ME, as some present it as, aren't unreasonable.
     
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  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    You're welcome. It's always a pleasure to chat to our Dave! :D

    Yes, we discussed that at great length. And the ICC and CCC fell behind in the rankings when NICE scored them based on process and rigour, too.

    The criteria with the broadest range of expertise, the most transparent process and the clearest/most accessible set of symptoms was IOM.

    And we confirmed that with Jason's empirical analysis, which filled the procedural gaps in the IOM criteria's development but also broadly corroborated it.
     
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  6. Trish

    Trish Moderator Staff Member

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    I was also very interested to hear how thoroughly the NICE evidence reviewers and committee looked into the argument put to them by the BPS people that the PACE and other trials had included people with PEM - and found that actually none of those trials gave any indication that they were diagnosing PEM correctly, generally equating it with fatigue after exertion.

    I hope I remembered that correctly @adambeyoncelowe.
     
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  7. Andy

    Andy Committee Member

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  8. Sean

    Sean Moderator Staff Member

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  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Is there or will there be a transcript available somewhere?
     
  10. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I think YouTube adds closed captions automatically as long as the language settings have been correctly assigned - but that can also be done [by the person who uploaded it] once it has been uploaded. [tagging @dave30th]
     
    Last edited: Nov 28, 2021
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  11. JohnTheJack

    JohnTheJack Moderator Staff Member

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    OK, thanks.
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I started working on one based on the youtube generated transcript but don't think I'll get it done so you might as well just read the transcript on youtube, although as always there are some unusual results eg "positive exertional males" for pem:D
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    Brilliant. Many thanks @adambeyoncelowe and @dave30th.

    Really brings out how well NICE managed things, and ensured their rigorously evidence-driven process was beyond reproach - highly worthwhile as things turned out.

    Given that perfection is impossible, and compromise inevitable, it really came across how very well the committee did to achieve such a very good compromise on behalf of pwME; could so easily have gone very badly wrong otherwise.

    Interesting that the BPS trials' evidence being very low or low quality was not the only issue anyway, given that GET exceeded the £20k cost criterion as well. And so the only way GET could ever have been considered for inclusion would have been if it were considered exceptionally beneficial to patients, which even the BPS people have grudgingly conceded, in as many words, that it most certainly is not. They would presumably have needed to get their evidence quality lifted from very low / low to something more like high / very high - even they might have to accept a tricky one for them ... albeit they likely would not.

    And major congratulations on your marriage :). Glad it was a great day for you both.
     
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  14. Wonko

    Wonko Senior Member (Voting Rights)

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    That is upsetting, now I will have to watch it, to find out how at most 12 'sessions' of GET could possibly cost over £20K.

    I assume that this could only be justified by having someone who is expensive to hire, like the Pope, to deliver the 'therapy', and not a junior grade 'therapist' following a script.
     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    You have to remember that is £20K to get one more satisfied customer than placebo. A treatment course might cost £200.
     
  16. Wonko

    Wonko Senior Member (Voting Rights)

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    Which might imply a 'success' rate of 1 in 100?

    That is 1%, for the leading, gold standard, treatment a year ago.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes 'number needed to treat = 100'.

    Even for good treatments NNT can be around 7 but you only have to look at the PACE graphs to see that this as a pretty feeble effect. I think it was modestly called 'modest' by the authors.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Of more recent times anyway, once they started to realise they needed to find something between "a thing of beauty" and "total cr@p".
     
  19. Trish

    Trish Moderator Staff Member

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    And yet the Chronic pain and Long Covid guidelines are pretty bad. So I conclude that the ME/CFS guideline was good because the people on the committee did a good job.
     
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  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But also those people were on the committee because people like Charles Shepherd and Margaret Mar had convinced Mark Baker that an attempt at an independent committee was needed. Certain people were very obviously bounced, even if some others were not. The decision to have a committee to consider de-recommending GET had been made in effect. For chronic pain and Long Covid I do not think the pressure would have existed.
     
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