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

[Barry]

Does anyone have insight into this quote from a Bristol physiotherapist actually praising the new guidance?

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation of biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.

Certainly at odds with the psych contingent of the Bristol CFS/ME service. Is he in open disagreement with them? Or is he/they trying to mask all the bad they've done to date? I guess there must be considerable pressure on them to about turn and try and save face in the process. Interesting.

 

[It's M.E. Linda]

Does anyone have insight into this quote from a Bristol physiotherapist actually praising the new guidance?

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation of biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.

@dave30th some discussions here:

https://www.s4me.info/threads/bacme...fatigue-syndrome-me-cfs-oct-2020.17360/page-4

 

[Jonathan Edwards]

Certainly at odds with the psych contingent of the Bristol CFS/ME service.

Actually their spokesperson said exactly the same thing in effect.

 

[Barry]

This sounds very much the line that is being sold in a united front by psychologists and physiotherapists like those that I met at the NICE committee. It was suggested that my critique of PACE was irrelevant because therapists have moved on from the deconditioning idea, which is no longer the basis for treatment.

Which would be very much at odds in that case with the psych responses on the SMC website, where they still strongly peddle their belief in GET. Or are they trying to suggest that GET still works, even if their illness model underpinning PACE is now disproven. In which case GET has never been trialled for whatever illness model they do now have in their imaginations, so how can they suggest there is any evidence for its safety or efficacy.

 

[Jonathan Edwards]

Which would be very much at odds in that case with the psych responses on the SMC website, where they still strongly peddle their belief in GET. Or are they trying to suggest that GET still works, even if their illness model underpinning PACE is now disproven. In which case GET has never been trialled for whatever illness model they do now have in their imaginations, so how can they suggest there is any evidence for its safety or efficacy.

I suspect that the therapists are completely dissociated from the PACE authors now. Certainly, I was led to believe that PACE was ancient history of no relevance to current practice.

There are two different motivations at play. One is job retention (therapists). The other is protection of academic reputation (the PACE crowd). PACE has fallen, so the therapists are pursuing a different approach.

 

[dave30th]

I suspect that the therapists are completely dissociated from the PACE authors now. Certainly, I was led to believe that PACE was ancient history of no relevance to current practice.

Jo, did you engage in Q-and-A with the committee after presenting your report?

 

[dave30th]

I suspect that the therapists are completely dissociated from the PACE authors now. Certainly, I was led to believe that PACE was ancient history of no relevance to current practice.

There are two different motivations at play. One is job retention (therapists). The other is protection of academic reputation (the PACE crowd). PACE has fallen, so the therapists are pursuing a different approach.

Yes, this seems likely to be what is going on. And I think the concerns about the wording in the guidance are well-founded. Whatever the guidance says, it is hard to prevent therapists who believe in their therapies from doing what they want once the patients are there.

 

[Barry]

I suspect that the therapists are completely dissociated from the PACE authors now. Certainly, I was led to believe that PACE was ancient history of no relevance to current practice.

There are two different motivations at play. One is job retention (therapists). The other is protection of academic reputation (the PACE crowd). PACE has fallen, so the therapists are pursuing a different approach.

Yet the therapists still push treatments founded on theories they believe are irrelevant. Weird. Let's hope this guideline makes it through in a form that will shake things up a bit.

 

[Barry]

I have a question that I hate to ask as it might come across unkindly, but...

Does the team putting together the submission need to be made up of entirely British members? If it isn't, is there a risk that NICE might throw it out? I don't know anything about how NICE works but just want to make sure that this has been considered.

No Sarah it is not unkind, just a question that needed to be asked.

 

[Jonathan Edwards]

Jo, did you engage in Q-and-A with the committee after presenting your report?

Briefly, yes, although it consisted mostly of tangential justifications of practice by some of those present.

 

[Jonathan Edwards]

Yet the therapists still push treatments founded on theories they believe are irrelevant. Weird.

I am not so sure it is weird. The therapies are founded on popular public prejudice about ME - that all you need to do is get in the frame of mind to get up and get back to normal activity. The theories were just a pseudoscientific elaboration of those prejudices.

 

[Gecko]

Request from today. "Do you know how I can find the oxford Brooks research that NICE asked for with regards to children?" Is it shown in the cited reference section and graded in terms of evidence?

@Suffolkres it's in the supporting documentation here:
https://www.nice.org.uk/guidance/gid-ng10091/documents/supporting-documentation

Parts of it make for pretty depressing reading, a bunch of quotes from children demonstrating awful treatment:

“my mum wasn’t allowed to come in with me… it was quite scary, it was the first time I’d ever been in to a medical appointment without my mum"

“the person [HCP] I was seeing couldn’t cope with the fact that they couldn’t fix me or what it was that really went wrong as such, but it kind of went … it sort of ended up with me getting quite frustrated, because it was sort of like it felt to me like the person I was seeing was kind of like blaming me”

“They just kept on saying… they kept on saying you have to go out every day – which I didn’t feel good enough to do– they kept on just saying everything wrong, they just weren’t right at all. They were almost like …. literally they just, they weren’t helping, they were just getting in the way or something”.

 

[MEMarge]

Briefly, yes, although it consisted mostly of tangential justifications of practice by some of those present.

This manual produced by Maria Loades for the Bath Paediatric Service in August 2020 seems to tie in completely with PACE-based ideas of "treatment" for CFS.

https://www.ruh.nhs.uk/patients/ser..._me/resources_for_professionals.asp?menu_id=1

See thread:
https://www.s4me.info/threads/cbt-f...tal-bath-uk-loades-m-e-starbuck-j-2020.16652/

It is titled "CBT for CFS Therapist manual" - version 1

It is full of BPS

 

[Jonathan Edwards]

This manual produced by Maria Loades for the Bath Paediatric Service in August 2020 seems to tie in completely with PACE-based ideas of "treatment" for CFS.

Yes, that is intended for psychologists I presume, so the need for the new propaganda is not there.
One of the salient features of the BPS crowd seems to be that they have no idea that they have been in the habit of discussing patients amongst themselves as if they (patients) were dumb animals.

 

[Daisymay]

I am not so sure it is weird. The therapies are founded on popular public prejudice about ME - that all you need to do is get in the frame of mind to get up and get back to normal activity. The theories were just a pseudoscientific elaboration of those prejudices.

Yes and no, I think the public prejudices were to a considerable degree promoted by the BPS brigade, courtesy of the media, to set the scene so they could more effectively promote their agenda.

 

[Jonathan Edwards]

Yes and no, I think the public prejudices were to a considerable degree promoted by the BPS brigade, courtesy of the media, to set the scene so they could more effectively promote their agenda.

I think that was what I was saying!

 

[Daisymay]

I think that was what I was saying!

Oops, sorry, ME brain!

 

[Ravn]

Or are they trying to suggest that GET still works, even if their illness model underpinning PACE is now disproven.

That's my impression. They've moved on from deconditioning and, in some cases, from conscious false illness beliefs. It's now more about subconscious "learned" behaviour, i.e. your brain interprets harmless input as a threat and reacts (subconsciously) with the sickness response. Alternatively it's central sensitisation. Either way, the treatment is CBT or some form of brain training intended to make your brain feel safe, or GET to slowly desensitise your brain from reacting to exercise. So the illness model changes but the treatments remain the same - though they'll get new names no doubt, to make it less obvious.

Needless to say GET and CBT (under whatever new names) still don't work - that we have plenty of evidence for. And that's totally irrespective of whether this new illness model is correct or not. AFAIK there's no actual evidence that it is any more true than the old deconditioning/false illness beliefs model but even if it turns out to be correct, the main point is that GET and CBT still don't work.

 

[rvallee]

I think this is new but it's not dated, though the language suggests so.


Scottish Good Practice Statement on ME-CFS

https://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/

The Scottish Good Practice Statement on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME-CFS) was published in November 2010. Scottish Ministers have given a commitment to review the content of this Statement when the National Institute for Health and Care Excellence (NICE) publishes its revised guideline on this condition in 2021.

NICE published its draft guidelines on ME-CFS on the 10 November 2020 https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline. Please note there are two major differences relating to treatments for ME/CFS:

Quoted from the NICE draft:

• Do not offer people any therapy based on physical activity or exercise as a treatment or cure for ME/CFS including any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.

• Cognitive Behavioural Therapy is not a treatment or cure for the condition and should not be offered in this context. It may be useful though in supporting people who live with ME/CFS to manage their symptoms and to improve wellbeing and quality of life.

Please also note that in August 2020 the Scottish Health Technologies Group (SHTG) published a rapid review into the use of GET as a treatment for people with ME-CFS. This concluded that:

• In light of a Cochrane systematic review and the NICE guideline revision, caution should be noted on the use of GET for ME/CFS until the updates are published, and
• No published evidence on the use of GET for people experiencing persisting fatigue following Covid-19 was identified. NICE has made a statement cautioning against assumption that ME/CFS recommendations apply to people with fatigue following Covid-19.

 

[FMMM1]

Does anyone have insight into this quote from a Bristol physiotherapist actually praising the new guidance?

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation Iiof biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.

Am I missing something or is this gibberish? Reminds me of the Sir Humphrey

"which suggests that reversing deconditioning can lead to recovery" --- so the problem is lack of exercise (deconditioning) and the objective is to reverse that deconditioning?

Surely the problem is the "dysregulation of biological systems in ME/CFS" and the goal should be to understand and reverse that?

I'm a bit worried that those responsible for analysing the review committee's report/recommendations, and outcome of the consultation, may not hold the line that this is crap. Also, it's politically toxic (a politicians first objective is to get re-elected) so best to ditch all of this and move to understanding the underlying disease and addressing that. E.g. delivering the GWAS study and creating a centre of excellence in the UK - possibly Newcastle University. Maybe try to challenge the underlying message that people with ME are being told that boot camp, and psychology, will help i.e. it's all about negative thoughts --- why not try that for cancer --- OK some of these people probably would suggest that. If you can explain to Government why this is a risk to them (political image) then they'll be more inclined to get rid of reversing deconditioning and all in the mind (CBT or whatever).