UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Thank you mods and admins for all the work collating links and content for this new thread.


Please move the following if it would be better placed elsewhere:

At 5.58am this morning I received notification from WDTK of a response to my outstanding FOI.


(My bolding)

https://www.whatdotheyknow.com/requ...e_e?nocache=incoming-1905428#incoming-1905428

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

29 October 2021

Dear Suzy

Reference: EH-317847

FREEDOM OF INFORMATION ACT 2000

I am sorry for the delay in responding to your request for information.
Please find the response to your questions below:

1. The date on which Quality assurance for guideline: Myalgic
encephalomyelitis (or encephalopathy)/chronic fatigue syndrome:
diagnosis and management In development [GID-NG10091] was signed off.

Response: The guideline was signed off on 08 July 2021.


2. The date on which the NICE Pathway (everything NICE says on a topic in
an interactive flowchart) and any supporting resources were signed off
for quality assurance.

Response: Information not held. A NICE Pathway is an alternative
representation of other NICE guidance, the content is the same. The
content was signed off under 1 and 3.


3. The date on which NICE's Guidance Executive signed off guideline
GID-NG10091.

Response: NICE’s guidance executive approved the guideline for embargoed
release on 30 July 2021.


If you have any questions on this response you are welcome to email the
enquiry handling team at [1][NICE request email].

If you are unhappy with this response and want an internal review of how
we handled your request etc.

-------------------------------------------------------------------------------------------

So there we have it:

Quality assurance signed off on 08 July 2021.

Guidance Executive approved the guideline for embargoed release on 30 July 2021.


I'll add these dates to my unofficial Timeline.

It doesn't look as though the other outstanding requests submitted via WhatDoTheyKnow have been fulfilled yet.

See: https://www.s4me.info/threads/foi-r...lay-publication-of-the-final-guideline.23023/

Status of the overdue requests submitted directly to NICE unknown.

 

So it does look like, as suspected, that at a certain point in time NICE made a blanket decision not to answer any further FOI requests on the ME/CFS guidelines until after publication.

 

NICE statement about the guideline publication.

"And the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS."

....

"The importance of ensuring that people remain within their energy limits when undertaking activity of any kind is also highlighted."

https://www.nice.org.uk/news/articl...nes-steps-for-better-diagnosis-and-management

 

Yes. I was told:

"We have received an unexpectedly high number of similar overlapping
requests. The complexity of processing them alongside reduced capacity
within the small team that handles Freedom of Information requests at
NICE, has meant we have needed to request advice from our external legal
advisers. This has caused additional delay in terms of providing a
response."

 

Though the timing of the response to the three dates you requested, suggests it was more than just a work load issue, though that is likely to have been a factor. Rather that there was also a policy/political decision not to answer anything until after publication.

 

The guideline was signed off for Quality assurance on 08 July 2021.

NICE’s Guidance executive approved the guideline for embargoed release on 30 July 2021.

The three committee members who stepped down (Michael Beadsworth; Gabrielle Murphy; Joanne Bond-Kendall)
resigned on 26 July 2021.


Committee member list PDF 136 KB 29 October 2021

(which notes the date on which these three stood down)

 

Did we not recently, from somewhere official, gain the impression that the resignations came after the signing off?

 

Wasn’t it that the resignations came after well the guidelines committee had agreed the final guidelines, which had to happen before the various formal stages like the signing off by the Guidance Executive? Though I forget where I saw this, and I am struggling to find the timeline anymore on the NICE site.

 

What about other media outlets?
Telegraph, daily mail, itv etc. Isn't it an idea to contact them to improve coverage??

This is an opportunity for us to change the narrative

 

NICE have issued a ‘latest news’ piece on the new guidelines

see https://www.nice.org.uk/news/articl...nes-steps-for-better-diagnosis-and-management

 

Have you seen the excellent S4ME press release in the second post of this thread
https://www.s4me.info/threads/uk-ni...ost-publication-discussion.22996/#post-385841

Some much information rushing in at present!

 

The news articles look pretty good except for the term "Victory for campaigners"

The comments of Miller and White are annoying but they focus on "gentle and controlled pushing" of patients' limits. White says that
"this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it."
So I think their comments aren't very nuanced and give people a good sense of what the problem with GET was.

I do find it a bit unfortunate that there is so much focus on fixed increases as the problem with GET. Even if the increases were not fixed and incredibly small, it would still be problematic to expect ill patients to keep increasing their activity level when they can't. The main issue, in my view, has always been the idea that limits can be pushed, that patients can do more if you encourage them to.

 

Once a guideline has been published, the Key Events Timeline is taken down.

So I took the precaution of taking a screenshot of how the timeline stood on 27 October:

 

https://twitter.com/user/status/1453995147738365953

 

Medscape (you need to log in to read it but it's free):
https://www.medscape.com/viewarticle/961843

They seem to have taken as many SMC quotes as they can.

 

Couple of charity reactions.

 

Re: physical activity and exercise, note that we inserted a clause that it also abides by the general principle of energy management (i.e., do not push through), and the general principles of care apply to the whole GL.

Be careful of reading sections in isolation, because it's meant to be read as a whole (and NICE doesn't like repetition, so we couldn't always restate stuff).

Edit: I had to double check the GL text, as it's been through so many drafts.

 

For reference:

1.11.14 Do not offer people with ME/CFS:

...any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)

That refers back to this bit in 1.11.13:

making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits.

I think we wanted it more specifically to refer back to energy management, but I am pretty sure this was the compromise.

ETA: The principles of care apply to the whole GL.

 

Isn't part of the problem that practitioners are unlikely to read it as a whole? Quite hard to get people interested at all.