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..