1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Discussion in '2020 UK NICE ME/CFS Guideline' started by Sly Saint, Oct 20, 2021.

Thread Status:
Not open for further replies.
  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    NICE has today (20 October 2021) announced the next steps for publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
    20 October 2021



    NICE will publish the guideline following a meeting of its Guidance Executive next week.

    Today’s announcement follows a roundtable meeting held earlier this week involving representatives from a range of patient and professional organisations, to discuss concerns raised about some aspects of the guideline that had led to the publication of the guideline being paused.

    Professor Gillian Leng, NICE chief executive, said: “We would like to thank all those who took part in the meeting earlier this week for their contributions to what was an extremely open and positive discussion. During the meeting we had a constructive conversation about all the key issues that had been raised – those concerning the criteria for diagnosing ME/CFS, the decision not to recommend graded exercise therapy, the role of CBT, and the particular challenges of treating children and young people with the condition, as well as the approach taken to identifying and considering the evidence.

    “We are now confident that the guideline can be effectively implemented across the system and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication of the guideline.”

    https://www.nice.org.uk/news/articl...ps-for-publication-of-its-guideline-on-me-cfs
     
    Last edited by a moderator: Oct 21, 2021
    livinglighter, Barry, Jan and 40 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    For some reason I have been struggling to understand what this actually announces.

    Am I correct in understanding that NICE, having had a meeting of their Guidance Executive yesterday, decided they intend to decide to publish the new guidelines at their next Guidance Executive meeting next week (do we know when next week?), such that the new ME/CFS guidelines will be published at a yet as unspecified date after that? However this publication will be “with additional clarification where necessary”

    So though we are assured publication will happen, there is still a degree of uncertainty over what is to be published and when. However it may be that the ‘clarification’ in relation to GET will be an improvement, on the basis of the feedback from people who attended the roundtable event.

    Apologies if I am being stupid.
     
    Barry, Sean, DokaGirl and 9 others like this.
  3. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    I read this as an announcement that it will be published "next week" (and not at some further time) following their meeting, with unspecified potential "clarifications" as refinements to the text.
     
    livinglighter, Sean, DokaGirl and 6 others like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    I think the sentence

    can be read in two very different ways:
    1. NICE had the Guidance Executive meeting yesterday and decided to publish next week
    2. NICE are having a meeting of the Guidance Executive next week, and publication will occur at an as yet unspecified time after that
    Unfortunately my reading comprehension is under par today.
     
    Barry, Jan, livinglighter and 8 others like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK
    From my vantage point it seems that the uncertainty is small enough to get a decent nights sleep, if unlike me, you are not suffering from carpal tunnel syndrome. I am hoping to get it injected tomorrow so even I might sleep over the weekend.

    There was no suggestion of any adverse changes being in the tweaks mentioned at RT and I think that is likely to hold up. I doubt anything will change over GET.
     
    Junobe, Barry, Joan Crawford and 25 others like this.
  6. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    I was getting the "next week" idea from:

    "We are now confident that the guideline can be effectively implemented across the system and we will therefore publish the guideline, with additional clarification where necessary, next week."

    otherwise it could just have been at some unspecified point after their meeting.
     
    MSEsperanza, Barry, DokaGirl and 6 others like this.
  7. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    I was hoping for positive tweaks and clarifications of the language consistent with what was reported to be the consensus position at the roundtable re: CBT ie that is it really not supposed to help you treat your symptoms. It needs to be as clear as possible.
     
    Junobe, Barry, Jan and 7 others like this.
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    I am in a bit of a fog following a bad night’s sleep last night, so though feeling positive, I was struggling to understand the nice NICE announcement.

    I hope you get your pain under control, and catch up on your sleep. Especially with all the work you have put into the guidelines process, both long term, but also over the last few weeks.
     
    Junobe, Kirsten, Jan and 17 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK
    I think it might be marginally clearer but I don't think people should expect any dramatic change. Nothing major was discussed at RT and I don't think NICE would introduce anything that had not been covered there.
     
    Junobe, ukxmrv, Barry and 16 others like this.
  10. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,051
    Location:
    UK
    It wouldn't necessarily mean the text of the guideline, would it? It could mean accompanying commentary or framing, for instance. To me that seems more likely because text changes could trigger a demand for further consultation...but really, who knows!
     
    ukxmrv, Michelle, Barry and 8 others like this.
  11. Chestnut tree

    Chestnut tree Established Member (Voting Rights)

    Messages:
    92
    Ouch sounds painful your carpal tunnel! Hope you get some relief.
     
    Barry, Jan, rainy and 10 others like this.
  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    Barry, Lidia, Wyva and 6 others like this.
  13. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    Sorry to hear about the carpal tunnel. :( I hope you feel better x :heart:
     
    Barry, rainy, Nellie and 13 others like this.
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324


    Mention of ME/CFS Guideline delay in the Minutes of Executive meeting held on 30 March 2021:

    11 Paul Chrisp highlighted that the final publication of the ME/CFS guideline has been delayed, most likely to August, to provide sufficient opportunity to consider the large number of responses to the consultation on the draft guideline.
     
    Binkie4, cfsandmore, Daisy and 4 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Michelle, MEMarge, Barry and 8 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Kirsten, Michelle, MEMarge and 18 others like this.
  17. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,674
    Location:
    UK
    Barry, Louie41, Daisy and 1 other person like this.
  18. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It is a real eye opener to read the comment by Patrufini Duffy and to google other responses to Pulse articles. I do hope that is not a practising GP.

    EDIT Wonko beat me to it.
     
    MEMarge, Louie41, Yessica and 4 others like this.
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,731
    Yes indeed. Awful attitude.
     
  20. TiredSam

    TiredSam Committee Member

    Messages:
    10,482
    Location:
    Germany
    There's a button you can press - "report this post as unsuitable or offensive" - which I did.
     
    Tilly, MEMarge, Louie41 and 10 others like this.
Thread Status:
Not open for further replies.

Share This Page