On the UK charities' support for the NHS psychobehavioural clinics

[Nightsong]

This post has been copied and the following posts moved from
Enduring symptoms: A call to immediate action, 2025, Barnes

I am not sure how accepting a team rehab approach to mild/moderate cases with no service for the severe or very severe (explicitly what is being negotiated) makes any sense.

It would make complete sense if, at the most senior levels of the two national charities, there is a privately held belief that ME/CFS is at least in part psychosomatic. Riley clearly did, and from his writings it was evident that he had held that view for decades. It would certainly explain many of their recent and historical actions & inactions.

I have just been reading this transcript (link) of a 2025 interview with two well-known senior MEA figures. I'm thoroughly astonished at their attitude towards these clinics.

Some clearly believe that multidisciplinary teams are a good thing, although I don't know why. My impressin is that they have swallowed the BACME 'dysregulation' approach which denies ME/CFS is psychobehavioural, while still taking a behavioural approach to 'therapy'.

The BACME "dysregulation" document doesn't deny that ME/CFS is psychobehavioural, though. It's a gloss over the BPS model. Its purpose is purely obfuscatory and to provide a self-serving post-NICE justification for the continuation of the psychobehavioural clinics.

And that is what they clearly still believe - the psychologist who runs the clinic nearest to me has been at least peripherally involved with BACME and apparently tells local patients that ME/CFS is an abnormal fear response & tries to gaslight-CBT them out of it. It's not just that the clinics are useless but that they are causing significant harm in a considerable number of cases. Support from patient organisations only means that they will further entrench themselves and perpetuate their loathsome views yet further.

The main argument seems to be that community multidisciplinary teams are what are on offer and whatever is on offer should be received with thanks. When I suggested that it might mean that the chance of physician involvement, care for severe and very severe cases and any associated research might go out of the window as a result the argument was that one had to be realistic.

We are not going to make any progress until there is a national charity dedicated to a completely different model of care, because the signals that the NHS and the medical establishment are receiving from the charities are completely at odds with the very clear wishes of the broader patient community to receive genuine medical care (even if there is dispute amongst patients as to precisely what that care should include).

The broader patient community needs to be made aware of precisely what the charities are doing, and how negatively it will affect all of our lives.

And we need a new national charity.

 

[Jonathan Edwards]

I have just been reading this transcript (link) of a 2025 interview with two well-known senior MEA figures. I'm thoroughly astonished at their attitude towards these clinics.

Can you be more specific. I had a look through. There seems to be a lack of grasp of the problem but not sure what more?

 

[Jonathan Edwards]

The BACME "dysregulation" document doesn't deny that ME/CFS is psychobehavioural, though. It's a gloss over the BPS model. Its purpose is purely obfuscatory and to provide a self-serving post-NICE justification for the continuation of the psychobehavioural clinics.

I think the therapy guide document does specifically deny a psychological basis. And the 'model' is not explicitly psychobehavioural. I agree that many BACME members may think people with ME/CFS need to sort their thining out - Sarah Tyson said that speciically here on the forum - but I see that as a different problem from the charity enthusiasm for multidisciplinary clinics.

ThereForME has been very vocal in calling for services and they are very clearly not supporting a psychobehavioural approach. I just think that a lot of charity-based advocates don't understand that 'multidisciplinary teams' are going to be rehab/physio based and that that is worse than useless. I see the problem as being one of not understanding the logistics of medical service provision.

 

[Trish]

Can you be more specific. I had a look through. There seems to be a lack of grasp of the problem but not sure what more?

The document seems to repeat the problem I see on the MEA website. Lots of stuff about what they are doing with ICB's in terms of meetings and advising, but no information about what they are advising the ICB's to provide except vaguely the NICE guidelines. Which could be just more BPS BACME clinics.

 

[Nightsong]

Can you be more specific. I had a look through. There seems to be a lack of grasp of the problem but not sure what more?

What struck me first is where they talk about the "Primary Fatigue Service" in Wales and how regrettable it was that this clinic had been suspended. What that clinic provided was group-based nonsense along BACME lines and also recommended "brain retraining". I can't find their webpage on the Internet Archive but WAMES has a copy of some of it here (link). It's precisely the kind of thing that needs to be shut down, not advocated for.

They talk about advocating in the context of LC for providing "additional funding to existing services or to now look at integrating services". The LC clinics are run along rehabilitationist lines; again, precisely what we don't need.

There is no criticism whatsoever of what the clinics are actually doing in practice.

It's also notable that the charities seem to consider themselves to be arbiters of the NICE guideline, rather than advocating for what patients actually want & need. The NHS is supposedly obliged to offer NICE congruent services but it certainly is not binding on the charities and there is considerable leeway within its bounds, as we have seen. The charities should be using the guideline as a cudgel where it is in patients' interests to do so but are in no way obliged to embrace its many flaws & compromises.

I think you take the BACME dysregulation document a bit too literally. It's constructed solely to provide a rationale for them to continue exactly what they have been doing that will sound acceptable to the average patient. These people have no serious knowledge of physiology as is all too apparent; the mechanistic parts read like a student physio set loose on PubMed.

 

[Jonathan Edwards]

I think you take the BACME dysregulation document a bit too literally. It's constructed solely to provide a rationale for them to continue exactly what they have been doing that will sound acceptable to the average patient. These people have no serious knowledge of physiology as is all too apparent; the mechanistic parts read like a student physio set loose on PubMed.

Don't worry, there is no chance of my underestimating the hypocrisy - I make that clear in my draft response to BACME.

I am trying to disentangle the disingenuousness of BACME from what I think is genuine naivety on the part of the advocacy groups. But I think we have the same analysis of the MEA transcript..

 

[bobbler]

Video

hoping this link works it is a reel that is talking about the issues of MDT (multidisplinary team meetings) specifically in the context of mental health care, but as many of the comments note it is still applicable for physical diseases and so brings up it seems an interesting point even without that complication of the power of mental health law that (whether you are under a dols, section etc or not or it is just a threat if you don't agree that will be what happens and you'll end up with that anyway then there is an issue of whether someone can really 'choose' without it being inferred that 'choosing what we want you to choose confirms you aren't fit to choose') is added in.

The biggie for me with these ideas is:

1. it takes away accountability and means that instead of someone, even if they needed to check the odd thing with someone else (eg if they were expert in which wheelchair), knowing that they were the one who made that decision and is responsible therefore for the outcome and watching how someone does and adapting what is done turns it into that group psychology and bystander effect.

Which then combines with the issue noted in video of making the patient one little voice in the room vs lots who assume they've got expertise even if they never met them, know nothing of the case other than someone else's notes etc.

2. We all know from meetings that there is a different thing from saying 'this person's issue needs 70% x person, 20% y person and 10% z person regarding what could be sorted' and then asking those people only to contribute on their area where they are 'qualified' ie actually have the expertise to answer that issue (rather than physios guessing about someone's home life re: mental health).

But these meetings by their nature are then not weighting things that way plus you have career effects where people need to be seen to be speaking up for all the different variety of personal/career reasons and the fallacy of 'every one must get their chance' round the table and I imagine for a junior it is like being at a job interview and feeling like an idiot when you don't have any questions to ask them. So the 'what's relevant/important' hierarchy then gets completely disrupted by a process that isn't at all individual because I bet they have to put something in the box for every discipline they've invited to sit there. Whether it does good or harm or just a distraction from what is the priority

3. that is before you start thinking about conflict of interest where people have to justify their own service and job based on 'demand' that they then have the power to impose (if they have some power that insist it either is 'the only treatment' or insist it would help someone when it wouldn't) and whether it 'has been or would be helpful and not harmful' - which it feels inappropriate to be assessed not by an independent person looking at someone's health and whether it has been harmed or helped by it only, but the person whose entire job is to believe what they do 'is helpful for this'. Turkeys can't vote for xmas.


And then in relation to the where does this sit vs the 'mental health' context of this one.

Even though ME/CFS has nothing to do with having a mental health illness that should have professionals meeting about it or looking for it, I'm going to suggest that for ME/CFS I think we are affected by both because of how errant suggestions of 'it could be something else' or 'it could be functional' even when there is a clear diagnosis and advice from elsewhere seem to be allowed to be used to ignore giving care and for someone to use this anyway.

And all sorts of dodgy reports seem to get written that we hear about that often have made up fake stories or twisted facts about someone's situation that weaponise not even proper 'mental health' just inferences (which to me seems unprofessional but apparently it's all OK in all of these sectors many of whom aren't even from professions that I think should give them the right to be telling such things, except for taking advantage of safeguarding being taken out of context).

Anyway. Unless someone is genuinely safe from all that, perceive they are safe and are psychologically safe where they absolutely know 100% defnitely can say no, walk away, have untruths rectified etc then it applies.


I don't know how much the 'multidisplinary' of clinics leads to this type of meeting and all of its errors and risks - but then its seems neither do the patients who might find they went to the clinic saw one person maybe were too ill to attend and appointment, or realised it was useless and a lot of energy that hurt their health and then declined it and found these meetings were goign on behind their backs.

SO no patient knows for sure that these aren't happenning. As per the above re: safety. And appropriateness. It isn't about 'health management' but a 'dealing with' as if it were an illness with some sort of risk to society that means things happen behind someone's back to have that sort of thing happenning that could have such implications occuring in a shadowy way without checks?

ANd also as per the above that ME/CFS isn't a psychological illness nor a mental health issue. So it is utterly inappropriate someone they aren't aware would be doing this sort of thing because their title is physio might then talk on those subjects unrelated to what they are qualified in when they spoke to them cracking a joke that then gets twisted and used as if it was something else.