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

"They will continue to refer to their remedies as “evidence-based” when they are clearly not"

maybe we should start using 'bad-evidence-based' as a counter tag.

 

Yes, and as was pointed out here in S4ME during the consultation process (and I concede I did not fully appreciate at the time), if CBT is to be correctly reserved for helping with comorbid issues, then all that is needed is to cross-reference to the guideline for the comorbid issues.

But I fully appreciate that this new guideline is a hugely better compromise than we might realistically have hoped for, and I'm delighted with it on that basis. No one ever wants to have to compromise, but if no compromise means you get very little, yet the compromise you get is most of what you need, then that is pretty d@mn good. I think the sulky silence from the 'other side' says a lot.

 

I think 'very-low-quality-evidence-based' might be a clearer reminder to folk of how these folk's evidence quality has been formally rated .

 

I would have thought that 'not evidence based' would have been simpler, and more accurate, for lay people to understand.

 

Yes, I'm a bit concerned by that ambiguity. I did spot it a while ago, but thought someone said that at the RT it really had been agreed to publish this coming week, but I may be wrong on that.

 

NICE did say “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" on line in the material put out by last Wednesday. I initially missed it and I was puzzled that everyone else seemed confident that publication was happening in the coming week. However when it was pointed out to me, I did find it. Unfortunately I did not record the link or take a screen shot.

So it could be this sentence that led most people to feel the ambiguity inherent in “NICE will publish the guideline following a meeting of its Guidance Executive next week” (see https://www.nice.org.uk/news/articl...ps-for-publication-of-its-guideline-on-me-cfs ) was of no matter, as it was clarified elsewhere.

Now, the unambiguous statement “NICE will publish … … … next week” is nowhere to find. This I do worry about, as that seems to suggest that the original unambiguous statement has either been deleted or rewritten, and that NICE actively wish to retain the option of not publishing next week.

 

Really? I'm shocked, so is it down to patients that CBT remains in the guidelines?

 

No it is down to health professionals. I was simply illustrating the fact that varying views on CBT cut across all groups of people involved.

My point was.
1. Best not to mention CBT.
2. It seems that the health professionals on the committee could not bring themselves to do this - maybe it was realised that no agreement could be reached on this and the process would fall apart with minority reports.
3. Once you allow CBT it is extremely difficult to argue precise rules of what sort is allowed because there is no evidence on any sort here. That said, I think the guideline makes it clear, if you read it intelligently, that the sort of recovery-aimed CBT linked to increased exercise is not recommended.

 

If you read it intelligently, if only everybody would, what are the chances though? I still feel very concerned for people going to these clinics, I certainly wouldn't recommend it.

 

At the moment, slim.

And so do, I.

Brian Hughes puts it very clearly.

There is a long way to go.

But trying to engage those who are intelligent enough to see what the guideline says, and why it says that, seems to me worthwhile

 

WaybackMachine captured 5 snapshots on 20 Oct ...


The 12:22 snapshot still had ...

https://web.archive.org/web/2021102...ps-for-publication-of-its-guideline-on-me-cfs




But by the 13:33 snapshot it had changed to ...

https://web.archive.org/web/2021102...ps-for-publication-of-its-guideline-on-me-cfs



So what did Gillian Leng actually say, given she is quoted as saying two different things? And more to the point, why was it deemed necessary to change the original quote.

 

"The chief deficiency in any study on CBT and GET for ME/CFS is nearly always the same: an over-reliance on self-report measures in what are inevitably unblinded trials."

 

In an earlier announcement when the date of the round table was changed they indicated the edit, in line with expected practice. It is strange that they failed to do so here.

NICE really have no room for messing about like this. Whenever they almost build up a store of goodwill they immediately dissipate it.

They have a director of communication and no doubt she has a department under her, all of whom earning salaries somewhat above the minimum wage, one would expect.

What is puzzling is that in order to say that the guideline will be published after an executive committee meeting next week, there must already have been a quorate executive committee meeting to approve of such arrangements.

It had all better work out or there will be calls for heads to roll. I almost forgot. That has been pre-empted.

 

There are no Minutes of Executive team (whose membership overlaps with Guidance Executive) meetings posted more recently that the Minutes for April 2021:

https://www.nice.org.uk/about/who-we-are/executive-team/executive-team-meetings

The meetings in January, February, March and April 2021 all took place on a Tuesday.

Assuming this coming week's meeting is also scheduled for Tuesday, and assuming the publication of the guideline has been added to the other business of this meeting (ie no additional meeting to the weekly meeting has been arranged to specifically discuss publication), I can't see publication happening before Thursday this week or possibly mid week, next week, because NICE's press office will still need time to send out press releases one or two days prior to publication of the guideline and its associated documents and online resources.

 

Thank you for clarifying that.

So @MSEsperanza was correct in suggesting that the ‘pull out’ quote on the NICE page is where the change happened. On the 12.22 snapshot ‘publication next week’ was clearly stated, though there was a discrepancy between the pulled out quote and the final sentence in the main text that was very similar but only referred to ‘publication after the meeting next week’.

Then by 13.33 the pull out quote was changed to match the final sentence in the main text, suggesting, as @MSEsperanza wondered, that perhaps when the page was created an earlier draft had been used as the source for the pull out. So that either NICE had never intended to commit to publication this coming week, or that they changed their minds on Tuesday or on Wednesday morning last week.

(Added - at least one roundtable attendee was under the impression that there was to be discussion of the guidelines at a Guidance Executive meeting last Tuesday)

 

I would stop fretting about the guideline publication. There is no reason to think it won't come out next week.

 

Yes, it does seem rather selective, now you come to mention it. Which does unfortunately smack strongly of inertia.