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

[Dx Revision Watch]

We could do with a stock response ready to send off every time someone confounds ‘ME/CFS’ with ‘chronic fatigue’ something along the lines of:

Is there any thing in the draft NICE guidelines that could be quoted here?

At one point, ICD Revision had got the [US ICD-10-CM] term:

"chronic fatigue, unspecified"

listed under the Synonyms list for ICD-11's 8E49 code. In 2017, I submitted, successfully, for that term to be deleted from the Synonyms list (proposal approved by WHO's Dr Robert Jakob in January 2018, implemented in March 2019).

 

[Dx Revision Watch]

NHS Digital's annual edition of its National Clinical Coding Standards for ICD-10 includes this note for coders and other end users:

Perhaps NHS Digital could be approached to edit the text of this note to read:

"Caution is required when "chronic fatigue" or "fatigue syndrome" is used as a diagnosis within the medical record..."

(Note that there is no specific coded term (or inclusion term) for "chronic fatigue" within ICD-10 or ICD-11.)

But I cannot take this forward with NHS Digital's terminology leads as I am retired now.

 

[Wyva]

@Michiel Tack 's rapid response to the BMJ's "Four members of NICE’s guideline committee on ME/CFS stand down" article

Dear Editor,

The article by Torjesen on the NICE guideline development committee for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) does not provide information on why the evidence on rehabilitative interventions was rated as low quality. [1]

Reviews by Ahmed et al. [2], Wormgoor et al. [3], Vink et al. [4], Tack et al. [5], and Wilshere et al. [6] have highlighted methodological weaknesses in trials of rehabilitative interventions for ME/CFS such as graded exercise therapy (GET) and cognitive-behavioral therapy (CBT). Professor Emeritus Jonathan Edwards explained these limitations in his expert testimony to the NICE guideline committee. [7​

The rest: https://www.bmj.com/content/374/bmj.n1937/rr-1

 

[Trish]

Excellent response, Michiel, thank you.

 

[Sly Saint]

@FMMM1 (posted earlier)
eta:
https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-46#post-360329

 

[FMMM1]

@FMMM1 (posted earlier)
eta:
https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-46#post-360329

Thanks @Sly Saint, I assumed it wouldn't be published!

I'd been regretting not including a comment based on insight from @Jonathan Edwards i.e. that Doctors value being able to refer people with ME/CFS somewhere. So, as well as the dodgy researchers getting public funding for low/very low quality research, BMs agenda may in part be that it's nice that Doctors have an option to refer patients somewhere - the "dodgy" research is useful in supporting those referrals! So a "win win" situation if you like well for the researchers & Doctors at least! They may not have published the response if I'd included that!

 

[Mithriel]

Roma Moss Morris is very involved with MS and it is the "evidence" of great success treating Chronic Fatigue Syndrome that is being used to sell it to people with MS.

The same thing is happening with diabetes and I remember there was a thread here about the RA society doing trials of BPS for fatigue in arthritis though I don't know if it was ever done.

There is a whole industry built on the unbelievably good (!) success of the PACE trial.

Just an aside, but I always thought the name CFS was so that ME could be diminished into chronic fatigue and nothing else but I wonder if even in those days they had an eye to all those other disease where people would pay to get their fatigue treated but had their own experts who were not willing to give up their power and influence.

 

[Peter T]

There is a whole industry built on the unbelievably good (!) success of the PACE trial.

Why don’t people question that if something is ‘unbelievably good’ it might just be in fact unbelievable?

Yes, the BPS empire building, all the MUS research, FND research, the UK IAPT (improving accesses to psychological therapies) programme, the use of CBT with IBS, non epileptic seizures, and any other condition you can think of with a poorly understood aetiology cites PACE as their starting point and if they have any condition specific research it is modelled on the PACE experimental design.

If/when PACE is accepted as low or very low quality the potential knock on is enormous, though we should not underestimate the capacity of the BSP crew to ‘reframe’ their position and rebrand the same old as something supposedly new.

 

[Fainbrog]

Remember you can view public tweets, even if blocked, if you are currently logged out of Twitter. You wouldn't be able to reply of course.

(I used to follow Twitter accounts for years without an account of my own, by just bookmarking them in my browser. Only signed up in order to promote rationality and push back against the US and UK you-know-whos and you-know-whats in Dec 2020).

Or you can use Private/Incognito mode (depending on your browser choice), save logging in/out of Twitter.

 

[InitialConditions]

Was there a decision about who could discuss the embargoed final guideline with regards to S4ME's position as a stakeholder?

 

[Barry]

Looks like an admin error on our part meant that we hadn't returned the confidentiality agreement to NICE, this was done last night so we should receive the guideline in due course.

Has S4ME received this yet? There is clearly going to be a lot for the S4ME team to check, in whatever time there will be left to do the checking.

What is the deadline for submission by stakeholders of corrections, clarifications etc? NICE presumably need some interval prior to the 18th during which to compile the final version.

 

[Andy]

Has S4ME received this yet? There is clearly going to be a lot for the S4ME team to check, in whatever time there will be left to do the checking.

Yes.

What is the deadline for submission by stakeholders of corrections, clarifications etc? NICE presumably need some interval prior to the 18th during which to compile the final version.

One week after initial release, so this coming Weds.

 

[Andy]

Was there a decision about who could discuss the embargoed final guideline with regards to S4ME's position as a stakeholder?

Well, this is my reply from earlier in the thread, but I wouldn't say it's a decision, more an attempt at a common sense view on the situation, particularly in relation to commenting outside of the forum.

As long as you are not one of our team who will have sight of the guideline before publication day then I don't see why you, or anybody else, should not be allowed to comment as you see fit. Should you chose to do so, and to be on the safe side, it's probably best not to mention your membership of the forum though to save potential complications.

 

[Barry]

Was there a decision about who could discuss the embargoed final guideline with regards to S4ME's position as a stakeholder?

Well, this is my reply from earlier in the thread, but I wouldn't say it's a decision, more an attempt at a common sense view on the situation, particularly in relation to commenting outside of the forum.

I'm genuinely confused @Andy. If the only people allowed to comment on the final pre-release copy are those who will not have seen it ... how does that work?

 

[Peter T]

I'm genuinely confused @Andy. If the only people allowed to comment on the final pre-release copy are those who will not have seen it ... how does that work?

My understanding is that the sub group who compiled our response to the November 2020 draft guidelines will have sight of the draft and compile our response in relation to any errors of fact if any such response is needed. Because of the embargo they then can not comment themselves on what they are doing or consult with the wider membership before the formal publication in any way that would breach our confidentiality agreement with NICE.

Though I agree we have not formally decided this as whole forum, it could be seen as implicit in us setting up the subgroup and I am personally happy we delegate this task to them if they are willing to take it up, and that we authorise them to send any response they see fit within the very limited time frame available, ie by Wednesday 11th of August.

[added - certainly on the basis of the exceptional standard of our feed back to the consultation on the Nov. 2020 draft, I am more than confident they are able to a better job than I could.]

 

[Barry]

Though I agree we have not formally agreed this as whole forum, I am personally happy we delegate this task to them if they are willing to take it up, and that we authorise them to send any response they see fit within the very limited time frame available, ie by Wednesday 11th of August.

Sorry, my comment was likely misleading. I fully endorse what you say here, and was not in any way meaning to suggest a wider readership of the final pre-print copy should be expected. Far, far from it. More than happy for our team to sort, and have full trust in them. I was just being a pedant about what to me read as a catch-22.

Edit: See next two posts.

 

[Sbag]

I'm genuinely confused @Andy. If the only people allowed to comment on the final pre-release copy are those who will not have seen it ... how does that work?

I think there was some confusion and Andy was replying about commenting on the BMJ article, whereas you were asking about the draft guideline

 

[Barry]

I think there was some confusion and Andy was replying about commenting on the BMJ article, whereas you were asking about the draft guideline

Ah ha! That would explain it. Sorry everyone .

 

[Andy]

I'm genuinely confused @Andy. If the only people allowed to comment on the final pre-release copy are those who will not have seen it ... how does that work?

The original concern raised by @Peter Trewhitt was, as I understood it, that given the forum is a stakeholder any forum member commenting publicly about the embargoed guideline in any way might be seen to be breaching the confidentiality guideline that I had to agree to on behalf of the forum. So my suggestion was that if you aren't a member of the team who has access to the embargoed guideline then you should feel able to comment on it, but if your comment was 'off-forum' then probably best to not mention your forum membership to keep things simple. My assumption is that this concern that @InitialConditions is referring to.

We have the same team who worked on our response to the draft guideline are working on doing the same with the embargoed final guideline, they should not be making any public comment that is based on their knowledge of what is in that final guideline before the embargo lifts.

In short;
Our NICE guideline team = no public comments but will contribute to the forum submission to NICE.
Any other member of the forum (who has not seen the final guideline) = make all the public comments you want.

 

[Esther12]

Does anyone know what happens to all of the documents related to the draft NICE guidelines once the full ones are released?

Are they still made available or do we need to archive them somehow? There was mention of NICE having done updated evidence reviews, so I wonder if that could change things, or if they'd be supplementary?

Someone just mentioned the way the Busse BMJ letter misrepresented some matters, and it would be good to continue to have evidence of that.

I also wondered the same about the 2007 guidelines (which don't include the draft): https://www.nice.org.uk/guidance/cg53/evidence

People refer to submissions from Barts etc on the draft 2007 guidelines as evidence of their views. Will all those documents disappear when the new ones are released?

Maybe @adambeyoncelowe would know?