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

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Sly Saint

Sly Saint

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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
 
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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.
 
Ariel said:
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.
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I think the sentence

NICE will publish the guideline following a meeting of its Guidance Executive next week.
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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.
 
Peter Trewhitt said:
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.
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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.
 
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.
 
Jonathan Edwards said:
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.
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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.
 
Jonathan Edwards said:
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.
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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.
 
Ariel said:
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.
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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.
 
Ariel said:
with unspecified potential "clarifications" as refinements to the text.
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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!
 
Jonathan Edwards said:
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.
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Ouch sounds painful your carpal tunnel! Hope you get some relief.
 
Dx Revision Watch said:
https://www.nice.org.uk/about/who-we-are/executive-team/executive-team-meetings#2021

In January, February and March 2021, the meetings of the Executive team were mostly held on Tuesdays.


There are no minutes posted for the Guidance executive whose membership overlaps with the Executive team.
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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.
 
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