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

[Barry]

but they might work around that by blaming something else perhaps.

For absolute sure. The nature of the beast.

 

[chrisb]

The nature of the beast

That's why we need stakeholder participation.

They hold the stake whilst someone swings the mallet.

 

[Jonathan Edwards]

Surely NICE should push this new information out to medical professionals, and not rely on medical professionals to pull it from NICE.

I think Leng and maybe Chrisp do actually take that seriously.
That was what the round table was for.
I think GPs are going to know about this because it is newsworthy if nothing else.

 

[Dx Revision Watch]

I've also just realised that everything after that sentence is not from the briefing note to DHSC.

I wonder where it comes from...?

[edited]

Do you mean this section, Lucibee? (Taken from the Nursing Practice copy as I can't see all the PULSE article now.)

The recommendations included not offering people with ME/CFS graded exercise therapy.

The briefing said: ‘The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise intolerance theories, should not be offered to people with ME/CFS.

‘The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS.’

The document also said that post-exertional malaise was a necessary symptom for diagnosis.

It comes as long Covid is still affecting about a million people in the UK.

 

[Snowdrop]

I have a thought I'd like to post but it goes back to something so basic WRT CBT that if your reaction is Duh! understand that I"m right there with you on that.

Usually, I manage to read only (mostly) and am not so good with synthesis of the information. Apparently, my brain was doing some house cleaning and two files ran into each other. That got me thinking . . .

I have without thinking more about it thought of CBT as the 'talking' aspect and GET as the 'doing' aspect of BPS delusion. But . . . those files Cognitive and Behavioural got me thinking (because we are now discussing them as still in the guidelines) that the behavioural aspect is doing something to the person. And in that context I'm wondering -- If some effort has been made to ascertain a PwME's sleep status -- that is that we do not sleep on time or wake often etc than can it not be legitimately claimed that any behavioural directive to do this or that (where the patient is changing behaviour that has them increasing energy output) is not so different from how people are tortured? I mean, unless sleep is fixed (how is that assessed?) how can they legitimately go ahead with anything that requires more energy expenditure?

Although not part of this thread this would also apply to dysautonomia which they see only as a result of laying around for too long -- which it can be but when it happens very early on is another reason to not invite more effort as it's clear that something is broken to have caused it.

Apologies if this is not at all clear or is somehow off point. But maybe there is something here that sparks some other thoughts.

 

[Lucibee]

Careful now @Dx Revision Watch

 

[Barry]

I think Leng and maybe Chrisp do actually take that seriously.
That was what the round table was for.
I think GPs are going to know about this because it is newsworthy if nothing else.

Excellent.

 

[Hutan]

What the new guideline does emphasise is that any treatment presuming illness to be due to deconditioning etc. is prohibited, which should make it much easier to block some of the old strategies.

That's good, I hope, but they might work around that by blaming something else perhaps.

And in that context I'm wondering -- If some effort has been made to ascertain a PwME's sleep status -- that is that we do not sleep on time or wake often etc than can it not be legitimately claimed that any behavioural directive to do this or that (where the patient is changing behaviour that has them increasing energy output) is not so different from how people are tortured? I mean, unless sleep is fixed (how is that assessed?) how can they legitimately go ahead with anything that requires more energy expenditure?

Edited: I do think, with GET becoming more unfashionable for ME/CFS treatment, that CBT practitioners will turn their focus to 'sleep'.

I agree, Snowdrop, that people shouldn't be making sleep deprived people increase their energy output. I feel very uneasy at the thought of CBT practitioners thinking it is their job to 'fix' sleep.

Already, NICE recommends CBT for insomnia:



If CBT practitioners or doctors start suggesting that CBT will fix hypersomnia in ME/CFS, then I think we have to demand evidence (both for fixing hypersomnia in ME/CFS being a good idea, and that CBT is effective in fixing hypersomnia in ME/CFS).

 

[Peter T]

I do think, with GET becoming more unfashionable for ME/CFS treatment, that CBT practitioners will turn their focus to 'sleep'.

Not in anyway a balanced survey technique, but it seems to me that on patient forums and social media it is already not uncommon to read comments from patients who are distressed as a result of encounters with the sleep police.

There already seem to be specialist ME/CFS services that seek to enforce their own sleep laws, without any evidence that it will help.

 

[FMMM1]

Well it bl**dy well should be someone's job, to at least make sure it is under their noses.

I assume the trusts, who are responsible for delivering care, are responsible for implementing the guidelines. NHS England [English National Authority] has responsibility - i.e. as the Authority which commissions care via the trusts - and the body which oversees the NHS system in England - so I guess it will assist the trusts in implementing the guideline.

Ultimately it is the individual trusts which bear legal/financial responsibility if a claim is submitted alleging a patients care did not reflect the guidelines.

Not really my thing but @CRG has a better grasp of this.

 

[Peter T]

I assume the trusts, who are responsible for delivering care, are responsible for implementing the guidelines. NHS England [English National Authority] has responsibility - i.e. as the Authority which commissions care via the trusts - and the body which oversees the NHS system in England - so I guess it will assist the trusts in implementing the guideline.

I assume also it is up to commissioning groups/bodies to specify compliance with guidelines when they are contracting for services.

When I was referred to a specialist ME/CFS service my GP needed specific agreement from the local commissioning group (CCG) that they would pick up the bill, before he could make the referral.

 

[FMMM1]

I assume also it is up to commissioning groups/bodies to specify compliance with guidelines when they are contracting for services.

When I was referred to a specialist ME/CFS service my GP needed specific agreement from the local commissioning group (CCG) that they would pick up the bill, before he could make the referral.

Regarding "I assume also it is up to commissioning groups/bodies to specify compliance with guidelines when they are contracting for services."
I assume that following the current guidelines is the only defensible option so it may not be necessary to spell it out; also the contract will probably have generic references to NICE guidelines - so the current version applies. I can't imagine a trust could make a convincing case/defense where they'd used the old guidelines after the new guidelines were adopted - e.g. if they claimed lack of knowledge of the new guidelines, then they'd have admitted that they'd used the wrong guideline!

It's occurred to me that guidelines change all the time so there'll be a standard system in place to ensure that the trusts etc. are aware of the new guidelines.

 

[Dx Revision Watch]

House of Commons Written Questions:

https://questions-statements.parliament.uk/written-questions/detail/2021-10-20/59949

Question for Department of Health and Social Care
Chronic Fatigue Syndrome: Exercise

Alex Sobel
Labour, Leeds North West

UIN 59949, tabled on 20 October 2021

To ask the Secretary of State for Health and Social Care, if he will make it his policy to ensure that NICE publishes the ME/CFS Guidelines in their current form to help prevent harm from Graded Exercise Therapy.


Answer
Edward Argar
Conservative
Charnwood

Answered on
25 October 2021

The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for publishing its final guidance. NICE issued a statement on 20 October stating that it will publish its updated guideline on myalgic encephalomyelitis/chronic fatigue syndrome following a meeting of its guidance executive on 26 October.

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

Note that the statement issued publicly by NICE on 20 October:

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

had not given a date for the meeting of the GC:

"NICE will publish the guideline following a meeting of its Guidance Executive next week."

But it was evidently scheduled for today, 26 October.

 

[Wonko]

The 21st of December 5,342 is "following a meeting of its guidance executive on 26 October", as are practically all dates, which have not yet occurred.

The repeated unhelpfulness of these answers, from many sources, to a simple question, that could be easily answered, is 'distressing'.

They know the intent of the question being asked, but repeatedly refuse to make any attempt to answer it.

When will the guidelines be published - a simple question, that they apparently feel replies along the lines of 'after the sun comes up' is an appropriate response - when such replies say nothing, at all, useful, towards answering the question 'when will the guidelines be published?'.

 

[Snowdrop]

I feel very uneasy at the thought of CBT practitioners thinking it is their job to 'fix' sleep.

Agreed. I don't think that anyone ATM has enough insight into how sleep works and how it can be broken enough to offer any solutions along the lines of something curative.

ETA: I don't know if what I wrote sounds like that was what I was suggesting. I absolutely think sleep is an issue and I also absolutely think that CBT'ists and everyone else have NO solutions.

 

[Peter T]

it will publish its updated guideline on myalgic encephalomyelitis/chronic fatigue syndrome following a meeting of its guidance executive on 26 October.

At least we have confirmation that the guidance executive was meeting today. Presumably this meeting has now confirmed the publication date and agreed the steps necessary for publication to happen, ie who to notify and how, any press releases and the details of the clarifications arising from the roundtable event.

So hopefully there will be some sort of announcement by tomorrow afternoon, or they will start informing steak holders very soon.

Publication this week remains a possibility. Though the statement on the NICE website that publication would happen this week was removed very promptly, this could just be because it did not have the authority of a formal guidance executive decision, and does not rule it out as their intention all along.

 

[Ariel]

I think they just made a mistake in putting out publication timeline information before the meeting. You do not want to preempt what is supposed to be agreed and signed off at a meeting that has not happened yet. I am not reading too much into it. I think we may even get publication tomorrow but certainly a statement stating the timeline if not. I don't really see it going on past next week, and they presumably intended to go ahead tomorrow.

 

[alktipping]

"So hopefully there will be some sort of announcement by tomorrow afternoon, or they will start informing steak holders very soon." i have not held a steak since the bse crisis in England .

 

[Sean]

I hope we don't see clinics diagnosing ME patients with some other label to enable them to carry on treating patients the way they want to as before.

I fully expect exactly this sort of thing to be common, and that we are going to have to spend considerable time and energy policing and enforcing compliance.

They will not give up their gravy train so easily. They are going to try every trick they can to keep it rolling right along.

 

[Amw66]

Agreed. I don't think that anyone ATM has enough insight into how sleep works and how it can be broken enough to offer any solutions along the lines of something curative.

ETA: I don't know if what I wrote sounds like that was what I was suggesting. I absolutely think sleep is an issue and I also absolutely think that CBT'ists and everyone else have NO solutions.

When I see sleep hygiene mentioned I remember Maddie Bourlet , a teenager ( I think under Bath) who was left bedbound and tubefed after trying to restructure sleep.
It can be as dangerous as GET