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NICE ME/CFS draft guideline - publication dates and delays 2020

Discussion in '2020 UK NICE ME/CFS Guideline' started by rogerblack, Dec 5, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Just one example but I'm seeing a lot of agreement from long haulers that post-exertional symptom exacerbation is a preferable term. Even in those who are not quite aware of the context and history of PEM.

    So, easy to argue this is an acknowledged improvement. Now if only they could understand there is a good possibility to make this happen and that they can influence it positively, that would be nice. As she says it's not established but there is an effort to make it happen, whether they agree with the ME/LC overlap or not.

    https://twitter.com/user/status/1408713305728954371


    https://twitter.com/user/status/1408717184730386434
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://twitter.com/user/status/1408805997179777033


    glad you got this reply in @rvallee ;

    the term Post exertional symptom exacerbation is quite well described in the new guidelines. my worry now is if the long covid community start using it before the guidelines are published that its specific meaning, with regards to ME patients, will get skewed.

    (they've already appropriated much of the existing ME terminology)
     
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  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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  4. cassava7

    cassava7 Senior Member (Voting Rights)

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    Minutes for meetings 29 and 30, in which, respectively, the analysis of PEM in GET trials and the recommendations were reviewed (including for physical activity), seem rather worrying but fair:

    The Chair and a senior member of the Developer’s team noted that previous interests declared meant that Luis Nacul would step out for decision-making on the research recommendations and Gabrielle Murphy and Luis Nacul would step out for decision-making on GET" (29) / "physical activity" (30)
    Gabrielle Murphy was the chair of BACME until recently (who are pro-graded activity management). Of note, Jo Daniels, who is a proponent of CBT, had to step out for decision-making on CBT (minutes 27).

    The committee seems to have reviewed the entire contents of the guideline at the last meeting (30) on 29 April. Presumably, any significant change should have been discussed by now, and the guideline should be in the process of being finalized.

    ETA: Gabrielle Murphy no longer chairs BACME (thanks @Sly Saint).
     
    Last edited: Jul 1, 2021
  5. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I don't think this is worrying. This 'stepping-out' generally happens to at least one member at each meeting, due to conflicts of interest.
     
  6. cassava7

    cassava7 Senior Member (Voting Rights)

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    Indeed. It is interesting to see that Dr Charles Shepherd had to withdraw from all meetings (24 onwards) after his letter was published in the Guardian on March 14th.

    The minutes explicitly state that the following recommendations were "amended" or "edited":

    - CBT (23, 28)
    - approach to delivering care, managing co-existing conditions, access to care and care for people with severe and very severe ME/CFS (28)

    The following recommendations were only "discussed and reviewed":

    - baseline tests, training, rest and sleep, and pain (21)
    - suspecting and diagnosing ME/CFS, time to make a diagnosis of ME/CFS, indirectness in GRADE ratings, diagnostic criteria and symptoms of ME/CFS, awareness of ME/CFS (22)
    - mental health and social wellbeing (23)
    - dietary management, principles of care, safeguarding (24)
    - energy management, physical maintenance, managing ME/CFS, information and support (25)
    - investigations to carry out if ME/CFS is suspected in order to exclude other diagnoses, orthostatic intolerance (26)
    - flares and relapses (27)
    - PEM in GET, Lightning Process and other non-pharmacological interventions (29)
     
    Last edited: Jun 30, 2021
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  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I had missed that. He was a co-opted member, wasn't he.
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    That's odd, not a single GET trial even had any mention or consideration of PEM, they literally don't believe in it. Should be done in a split second. I guess this is where semantics get discussed whether "boom-and-bust" is just code for PEM, which it obviously isn't, and neither is "post-exercise fatigue", if science has lower standards than the TV show Jeopardy just cancel the whole thing it's done.
     
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  9. Trish

    Trish Moderator Staff Member

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    Yes, which meant he couldn't vote. But it's a great pity he wasn't able to be present for all the key discussions on energy management, CBT, physical therapy. Yet others who use those therapies were present and able to vote.

    We can only wait and hope.
     
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  10. Andy

    Andy Committee Member

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    I received an email earlier today, pointing out that the minutes noted above had been uploaded to the website.
     
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  11. cassava7

    cassava7 Senior Member (Voting Rights)

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    The minutes do note that he was a co-opted member.

    I have edited my post above with more information on the parts of the guideline that have been amended or not. PEM in GET, LP, exercise therapies and non-pharmacological interventions was "discussed and reviewed", but this does not seem to have led to changes in the recommendations -- it is not stated explicitly --.
     
  12. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I don't think we know what exactly the PEM 'issue' is i.e., what was said that prompted a reanalysis, and by who? I can't quite work out the most probable explaination. If this was BPSers, what must they have said? what are they arguing for with respect to actual changes to the evidence base? and what could be the outcome?
     
    Last edited: Jun 30, 2021
  13. Barry

    Barry Senior Member (Voting Rights)

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    That's not quite right. The 2011 PACE paper has four mentions of "postexertional malaise", though I suspect they bandied the term around without any real insights into its implications. Would love for the full PACE data to be made available so that such things could be more deeply critiqued.

    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext
     
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  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Struggling with my memory this afternoon, but since the delay to the publication of the guidelines, haven’t White and others made claims that they had adequately addressed the PEM and GET harms issues in the unpublished data from PACE? (Can’t remember my source, but it must be either the Lancet or BMJ or newspapers stuff that has all been discussed here.) Presumably they at least had been pushing for any further analysis by NICE to include that supposed data.

    Thank you @InitialConditions for all the work you have done in relation to your FOI requests relating to aspects of the NICE extended date, etc.
     
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Uh, never noticed that. But those are just passing mentions hinting at a question that is not specified. And another one of the mentions calls it post-exertional fatigue, which White usually does. They have clearly no idea what it means, but I'm sure they can argue otherwise for more than a minute.
     
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  16. dave30th

    dave30th Senior Member (Voting Rights)

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    was this because of her public tweets about this issue?
     
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  17. Sarah

    Sarah Senior Member (Voting Rights)

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    It looks like it. The Register of Interests has an entry for the tweet:

    Interest arose: 6 October 2020, declared October 2020. Direct non-financial.

     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I had not appreciated that Daniels had been tweeting out of line. That looks like a pretty damning admission: 'strong proponent for #CBTworks in medical conditions'. Hardly what Ilora Finlay called interested but disinterested.

    Why on earth was she not down as having a competing interest right from the start?
     
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm genuinely surprised they made something out of it at all instead of pretending it doesn't matter. I fully expected this to be overlooked entirely when she wasn't rejected for having obviously biased views to begin with. Small bit of progress.
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    Quite. If the full PACE data were available I'm sure much better insights could be gained about how meaningful - or meaningless - there claims regarding PEM really were.
     

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