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. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    Also another practical reason why things don’t just go ahead straight after a meeting. bearing in mind they cover a lot of guidelines and regularly have drafts and new guidelines going live they will have to schedule publications to manage their comms workload.
     
  2. Tilly

    Tilly Senior Member (Voting Rights)

    Messages:
    350
    They are on a time limit due to JR but if they don't make a decision they hope they can run the JR out of time.

    Factor in the the NHS are lumping MUS (no research and a name that means nothing) and FND (now on NORD and so they will try to implement and ask NICE to make a guideline without any research) and implicating cfs which is also known as ME this was back in July and lasts until 2024 then you have a structure that has been put in place and has cost money to structure and you now have a game plan?

    https://www.nhs.uk/conditions/medically-unexplained-symptoms/
     
    Simbindi and Peter Trewhitt like this.
  3. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Given the round table meeting, and the well understood agreement from that to publish, then I imagine that all we are waiting for now is for NICE to go implement the publication process, which no doubt has a few administrative steps to it.
     
    MEMarge, Mithriel, Fainbrog and 2 others like this.
  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    There are now several threads and sub threads around the development of the guideline.

    When the guideline and its associated documents and resources are finally released do the mods intend that a new thread will be created or is one of the existing threads earmarked for posting and discussion of the new guideline?

    If a new thread is going to be created, could the first post be prefaced with the thread titles and links for the other major NICE guideline related threads please, as it's becoming a little difficult to keep track of what has been posted in which thread?
     
    Last edited: Oct 28, 2021
    Wits_End, Jan, Snowdrop and 10 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    51,858
    Location:
    UK
    The forum's guideline group have already prepared threads for discussion of the new guideline which will be moved to the public and members areas once the guideline is published.
    There will be a master thread with useful links to the guideline and to other threads in the first post.
     
  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324

    That's great, Trish, thanks.
     
    Midnattsol, Sean, Simbindi and 9 others like this.
  7. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    Very grateful indeed to all the moderators and all who took part in any way with the NICE guidelines, thank you x
     
  8. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    There's a threatened JR for which no claim has yet been filed and which following the announcements post the round table is redundant in its own terms, at least as presented in the letter before claim. As such it simply wouldn't get past the first stage of JR.
     
  9. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    Yes. Also, depending on what the public relations thinking is (if any) at NICE, there may be a wish to take the best opportunity for a media splash, in which case avoiding the Budget and COP26 would be essential to escape being drowned by political blancmange, young people trying at least to argue for a future, and armies of experts speaking almost entirely in initialisms, which is what will dominate the media for the next several days. And of course seasonal drivel about Halloween and Nov 5th, to me second week of November is looking good !
     
    FMMM1, Lilas, Simbindi and 5 others like this.
  10. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,633
    What I am finding frustrating is not any further gap till publishing, but rather the failure now to announce the publication date that was presumably agreed on Tuesday.

    Giving warning of the date, even if it is weeks or longer away, is surely not problematic, as normally giving advance warning of publication is an inherent part of the guideline review process. Failure to give a date now leaves open the, hopefully unlikely, concerns that NICE see a risk of further disruptions to the process.
     
    Simbindi, Kirsten, Daisymay and 3 others like this.
  11. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    200
    Location:
    London, UK
  12. Trish

    Trish Moderator Staff Member

    Messages:
    51,858
    Location:
    UK
    We have received the same information. I assume NICE will announce publication on their website some time today, but wanted to let stakeholders know first.
     
    SNT Gatchaman, Hutan, EzzieD and 39 others like this.
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,633
    Can I now complain that is not enough time to prepare? (Joke)

    Fantastic news!
     
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    Hallelujah!

    https://www.youtube.com/watch?v=SkcLUkuQpPQ




    Edited to add: I had intended to post this one

    Code:
    https://youtu.be/CWYKpwlVGso
    but never mind.
     
    Last edited: Oct 28, 2021
    Chris, SNT Gatchaman, Hutan and 19 others like this.
  15. Annie

    Annie Established Member (Voting Rights)

    Messages:
    31
    It could be good timing news cycle wise. Avoiding the Budget and COP26 next week, we might get some decent coverage.
     
    SNT Gatchaman, Hutan, EzzieD and 16 others like this.
  16. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,633
    It will be interesting to see how prepared the various media outlets are?

    Will the SMC already have their expert opinions ready, will they have many experts willing to stand against the NICE evidence review process, who will roll out the same blaming anti science patient activist trope, or will the SMC continue their trend of reporting less on ME/CFS and allow dissenting voices from the party line, avoiding too much controversy?

    Will we see battle lines being drawn this weekend, or will the conflict be more underground, focusing on MUS, FND and Long Covid, in the hope that ME/CFS will just disappear now those horrid activists have got what they want?
     
    SNT Gatchaman, Hutan, EzzieD and 13 others like this.
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    dangermouse, MEMarge, Barry and 2 others like this.
  18. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    Just to note that my powers of prediction remain undiminished :laugh:
     
    FMMM1, Hutan, Jan and 16 others like this.
  19. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    905
    Last edited: Oct 28, 2021
    Ash, SNT Gatchaman, Hutan and 30 others like this.
  20. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    Just received embargoed release........
     
    Simone, SNT Gatchaman, Hutan and 24 others like this.
Thread Status:
Not open for further replies.

Share This Page