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

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/

 

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.

 

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?

 

That's great, Trish, thanks.

 

Very grateful indeed to all the moderators and all who took part in any way with the NICE guidelines, thank you x

 

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.

 

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 !

 

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.

 

Just seen this on Twitter saying GL will be published tomorrow and final has been sent to stakeholders. Not sure if it’s verified though..

https://twitter.com/user/status/1453684699067527173

 

Can I now complain that is not enough time to prepare? (Joke)

Fantastic news!

 

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.

 

It could be good timing news cycle wise. Avoiding the Budget and COP26 next week, we might get some decent coverage.

 

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?

 

They haven't updated the Project Information page yet:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

Expected publication date: TBC

 

Just to note that my powers of prediction remain undiminished

 

A way to celebrate the news may be to donate to David Tuller's crowdfunding. He's almost there 95%.

https://www.s4me.info/threads/crowd...d-symptoms-and-related-stuff-fall-2021.22600/

https://crowdfund.berkeley.edu/project/27513

ETA: Also the fund in memory of Graham McPhee.
https://grahammcphee.muchloved.com/

 

Just received embargoed release........