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

Status
Not open for further replies.
Sarah said:
The letter says it is lodged on behalf of the eight stakeholders listed. 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' is the ninth entry on that list.
Click to expand...
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

There are many referencing ‘errors’ in the Evidence Reviews that accompany NICE’s Draft Guideline for ME/CFS that was published November 2020 and one quite significant problem causing multiple errors is that the referencing in Evidence Review G is all out of kilter. NB Evidence Review G is key because it looks at the evidence relating to the non-pharmacological management of ME/CFS. It contains 2 review questions, with the first considering the clinical and cost effectiveness of various non-pharmacological interventions and the second determining the experiences of patients who have received those interventions. Included in those interventions are cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

It looks as though NICE drew up a reference list of included studies for evidence review G that was 138 (or more) papers long, but then at some point culled some of the included studies leading to the final reference list for G being much shorter than the original one, at just 110 papers long. So the question is – would such a cull be at odds with the process by which NICE is supposed to review papers and studies – https://www.nice.org.uk/process/pmg6/chapter/reviewing-the-evidence – if it occurred later on in the process after the original inclusion/exclusion decisions had been made and/or after the review of included papers had commenced or been completed?
Click to expand...
 
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.
 
Peter Trewhitt said:
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
Click to expand...


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

So the question is – would such a cull be at odds with the process by which NICE is supposed to review papers and studies – https://www.nice.org.uk/process/pmg6/chapter/reviewing-the-evidence
Click to expand...


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?
 
Last edited:
Wonko said:
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?
Click to expand...
I wouldn't worry.
 
Jonathan Edwards said:
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.
Click to expand...
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.
 
As you will see here:
https://www.s4me.info/threads/uk-ni...th-october-post-publication-discussion.22996/
A thread has been set up for discussion of the guideline once it is published. The thread will then be unlocked and members will be free to add their general comments on the new guideline to that thread, as well as links to media articles etc.

Threads for discussion of specific sections of the guideline are prepared and will be moved to the members only area once the guideline is published.
 
Status
Not open for further replies.
Back
Top Bottom