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

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.

 

@dave30th some discussions here:

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

 

Actually their spokesperson said exactly the same thing in effect.

 

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.

 

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

 

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.

 

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.

 

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

 

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

 

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.

 

@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”.

 

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

 

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.

 

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!

 

Oops, sorry, ME brain!

 

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.

 

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/

Quoted from the NICE draft:

 

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

https://www.youtube.com/watch?v=dIto5mwDLxo

"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).