NICE ME/CFS guideline - draft published for consultation - 10th November 2020

An interesting point.

 

Well that seems to make clear what stakeholder really means, despite the woke gloss.
It means money.

 

Reply to clarify, having only just noticed this discussion.
After the FOI revealed that NICE were carrying out further analysis, a group of stakeholders communicated with NICE to the effect that should this result in substantive change to the guideline there should be a further opportunity for stakeholder consultation.
Doctors with ME are/were not stakeholder. But later made a public statement about "adding their voice". This statement was confusing because they just tacked themselves onto the list of orgs presented in the pre-existing communication, as if DwME had been there all along (and also didn't bother to count how many that made - still said 8). Obviously lot of water under the bridge since then and the position has now changed with the guideline 'paused'. However the response received from NICE (July 19th) about this may be of interest:
"Following our processes in the Developing NICE guidelines: the manual (PMG20)<https://www.nice.org.uk/process/pmg20/chapter/introduction> in exceptional circumstances, NICE may consider the need for a further 4-week stakeholder consultation after the first consultation.
This additional consultation may be needed if either:
* information or data that would significantly alter the guideline were omitted from the first draft or
* evidence was misinterpreted in the first draft and the amended interpretation significantly alters the draft recommendations.
NICE staff with responsibility for guideline quality assurance make the final decision on whether to hold a second consultation, in the case of the CFS/ME guideline this has not been required. The guideline is still going through the post consultation QA process during which all comments are considered by the committee, and we will publish the guideline on 18th August 2021. More can be read on quality assurance in the above guideline manual.”

 

Not sure which thread would be best to post this, but have included it here as it is in effect a comment on the draft guidelines. Goodelf has written a piece published on the Opposing MEGA blog, pointing out anomalies in the recorded selection of papers for the evidence review:

The Mystery of the Shrunken Inclusion List.
(Fact or fiction?)
See https://opposingmega.wordpress.com/...UfC0YZLVYkp9M4LheW79ojc07P8Nw6O2Ykyn-DoJOX6n8

My brain is not up to following the article this evening, but here is an extract

 

The question makes no sense to me.

Papers looked at to se if they meet inclusion criteria, if so - kept, if not - rejected.

Doing this again, after having done it at the start, makes no sense, as everything would be in the keep pile, and nothing in the reject pile.

Completely redoing it, also including the rejected pile stuff, also makes no sense, as with the same criteria, and the same papers, the same outcome would occur.

Just a massive waste of time and resources, the only purpose of which would be to cause delay and confusion, and try and force a mistake to crow about.

Now, obviously, I'm not a NICE person, or a knighted professor of any sort, or even a 47 times retired academic with no vested interests at all, so I'm clearly not qualified to breathe, let alone type, or to have an opinion, but that's my opinion.

 

Just a point, and it probably isn't material, but the link given in the Opposing Mega blog

is for the November 2012 retired Manual [PMG6] which is superseded by the revised version [PMG20]:

https://www.nice.org.uk/process/pmg20/chapter/introduction

Developing NICE guidelines: the manual
Process and methods [PMG20] Published: 31 October 2014 Last updated: 15 October 2020

 

https://www.nice.org.uk/news/articl...ps-for-publication-of-its-guideline-on-me-cfs

NICE announces next steps for publication of its guideline on ME/CFS

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.”

 

Leng: "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." (From the pull quote)

 

Yep - it appears that we didn't totally lose, how much that appearance relates to reality is currently unknown to me.

For people that 'won' we still don't know what we've 'won' - which is an 'unusual' state of affairs in my experience.

It 'seems' that the secret guidelines were okayed (not that we are allowed to know what they are), and now there is 'additional clarification where necessary'.

Additional clarification to a secret document.

Are they deliberately trying to drive people nuts?

 

I wouldn't worry.

 

I think I am clear what was won.
1. Respect
2. An official recognition that the evidence base for treatments involving increasing exercise is too poor to use as a base for treatment (other than in that it looks pretty clearly negative)

That is enough for one step.

 

now all they have to do (once the guideline is published) is to do a shed load of PR to let everyone know they got it wrong for so long to try and undo some of the harm.

Just having the same degree of 'understanding' and 'acceptance' as MS sufferers would be nice.

 

Oh... what a truly wonderful thought, the relief that would be makes me tear up just thinking about it.