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UK - NICE guideline on Long Covid

Discussion in '2020 UK NICE Long Covid Guideline' started by Dx Revision Watch, Oct 5, 2020.

  1. Andy

    Andy Committee Member

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    Just to confirm that we got our submission in on time. We won't be sharing it with you all yet, given the confidential nature of the draft, but once it looks like we can do so without being told off by NICE then we will (and I believe NICE will include it as part of the documentation once the guideline is published anyway).
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Thanks to those who contributed
     
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    UK
  4. Andy

    Andy Committee Member

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    Received from NICE just now.

    Dear Stakeholder,

    Re: NICE/SIGN/RCGP rapid guideline: management of the long-term effects of COVID-19

    I acknowledge receipt of your submission and thank you for participating in the recent consultation.

    Your feedback is important to us and we are extremely grateful for you taking the time to share your input, particularly in such a tight timeframe.

    Please can we take this opportunity to reassure you that all comments submitted will be shared with the expert advisory panel and the recommendations reviewed in light of stakeholder feedback.

    We will let you know once the final guideline has published later this month.
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    so this is likely to be around the deadline for submission for comments on the draft ME guideline.

    I'm not sure if this is a good or bad thing.
    Things that may arise in the LC guideline might have some bearing on the proposed contents of the ME guideline.
    I'm guessing some on the ME NICE guideline committee may have already raised this as an issue?
    @adambeyoncelowe @Keela Too

    (although there also might be justifiable fears of 'rocking the boat' and it having a negative effect on the final guideline).
     
    Keela Too likes this.
  6. Trish

    Trish Moderator Staff Member

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    I think it's probably more a case that what is in the new ME guideline should influence what goes in the long Covid guideline. We'll just have to wait and see. I can't see how the existence of long covid should or could influence the ME guideline. If people fit the diagnostic criteria for ME, they should be diagnosed with ME, regardless of what triggered it.

    I think the long Covid one is meant to be temporary and amendable over shorter than normal timespans, so maybe once the ME guideline is finally published next Spring, and people with long Covid have had a chance to think about whether their guideline is useful, there may be pressure from long covid groups for change.
     
    ladycatlover, Andy, Hutan and 3 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    Thanks MEMarge for the comment and for your work on the response. There was a fair bit of copy/pasting of @Jonathan Edwards' comments and of course it was a team effort.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    ???

    Besides the extreme oddity of asking him, of all people, this is a weird comment, even more so by its complete lack of context of who is giving that comment.


    Long Covid: Hospital patients to get checks at six weeks

    https://www.bbc.com/news/health-55352409

    I guess those are coming out any day now.

    But...

    Wait...

    Who's...

    Talking:
    Aaah… just 8 months too late. That's the kind of thing that takes expertise to be able to predict. We were talking about it back then. The "leading researcher" has nothing to say, however.

    Really, consider the hidden humiliation this represents. This man, this "leading researcher" in "chronic fatigue", who has spent much of his career working on this very topic, who has been profiled many times as a "leading researcher" in this very topic, one with such incredibly vast and advanced knowledge of it he has created powerful and effective treatments for it used around the world, commenting on the very topic he has dedicated his career and reputation to, when this very problem has reached heights catapulting it into the limelight as a generational struggle that will cost the economy dearly, right as millions of medical professionals will have to be trained to deal with this very problem this "leading researcher" with very advanced knowledge of this dreadful condition must surely have, these people ready and willing to listen to how they can better care for those poor sick people.

    And he is cited as... one doctor. Not even A doctor. One doctor. Just that. Nothing more. A mere nobody mentioning this in passing for no particular reason, certainly not having to do with being labeled as a "leading researcher" on this very topic, having published numerous books, given talks and influenced clinical care around the world.

    Nope. Just one doctor. Just another random nobody commenting generally about topics related to his profession. Nothing more.
     
    Last edited by a moderator: Dec 19, 2020
    Liessa, alktipping, Mithriel and 5 others like this.
  9. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    The BBC reported is being extremely disingenuous here calling him a doctor and not a psychiatrist. Why the omission? And listing him as professor of psychological medicine, what is that?
    ps There are some amazing psychiatrist's out there, why is it always the same old, same old?
     
    Last edited: Dec 18, 2020
    Helene, MEMarge, EzzieD and 3 others like this.
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    Don't be unkind to the man. All he ever wanted to do was to treat illness behaviour. How could he be expected to deal with effects of disease?
     
    Helene, alktipping, MEMarge and 4 others like this.
  11. Andy

    Andy Committee Member

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    NICE have released their "COVID-19 rapid guideline: managing the long-term effects of COVID-19", see https://www.nice.org.uk/guidance/ng188

    We were distinctly underwhelmed by their original draft, and on a quick scan of this, not much has changed. It would seem they are determined to steer clear of acknowledging any possible connection with any other post-viral syndrome and/or ME/CFS.

    Text of our submission is integrated into the same document as everybody else who commented on the draft, so for ease of reading I've attached a copy of our submission (you will need to be a forum member to access it).

    The panel list and declaration of interest, https://www.nice.org.uk/guidance/ng188/documents/register-of-interests, reveals that our friend Trudie Chalder is one of the 'experts'.
     

    Attached Files:

    Hutan, Robert 1973, Liessa and 13 others like this.
  12. Andy

    Andy Committee Member

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    Tweet from NICE
    https://twitter.com/user/status/1339857956800778243
     
    Hutan, Michelle, ladycatlover and 4 others like this.
  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thank you @Andy and all those involved in engaging with this on the behalf of pwME.

    It really doesn't get boring these days.

    I've not been able to have more than a very quick glance on the draft and an even quicker glance on your submission and the now released guidelines-- so just want to say thank you for your work on this.

    I'm very concerned that all the progress made with the ME guidelines thanks to a very "evidence-based" NICE guidelines committee could be counteracted in the long term by the people NICE chose to work on the 'LC' guidelines.

    So would be happy if anyone could give a short summary.

    (Edited for clarity.)
     
    Last edited: Dec 18, 2020
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't think you need to worry. The LC team think they can breeze in and carry on the old story. They will have no impact on the ME committee decision and for LC their plans will fall apart quickly. For one thing there will be no staff to do rehab, what with there being no staff to run ordinary hospital care at present.
     
    Hutan, JaneL, Michelle and 8 others like this.
  15. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Not one mention of post-viral illness / syndrome / fatigue in the whole guidelines. It's as if a whole body of research—and the documented experience of millions around the world who became chronically ill after as virus—just don't exist, and didn't exist until Covid-19 came along.
     
    Hutan, JaneL, Michelle and 14 others like this.
  16. Wonko

    Wonko Senior Member (Voting Rights)

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    Clearly covid 19 is not a virus then.

    As otherwise it would be impossible to legitimately not mention that an ongoing illness, after a viral infection, was post viral.

    And as everyone involved in this is clearly a good apple, and wearing a white hat, that means that covid 19 is not a virus.
     
  17. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    Just conducted an interesting experiment. Type 'professor of psychological medicine' (with the quote marks) into google and see what turns up.
     
    alktipping likes this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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  20. chrisb

    chrisb Senior Member (Voting Rights)

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    Does it deal adequately with potential insidious onset? There seems plenty about new symptoms arising after acute onset. Perhaps I have missed it.
     
    Invisible Woman likes this.

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