Enduring symptoms: A call to immediate action, 2025, Barnes

[Nightsong]

I have spent quite a bit of time trying to address this in the last month or so. Sadly, I have to say that I have had a fairly hostile reception from the people who speak loudest. I have, nevertheless, had significant support from some others who struggle to be heard.

Could you elaborate a little on the rationale the 'people who speak loudest' give for supporting more funding & resources for the psychobehavioural clinics?

To me the situation seems straightforward: if charities & advocates want these clinics to receive more funding & resources, then necessarily they must support what it is they are doing; if they support what the clinics are doing, then they must believe ME/CFS is amenable to psychobehavioural interventions (because overwhelmingly that is all the clinics offer); and, if they believe that, then it follows that they believe that ME/CFS is psychosomatic. Unless these (presumably) charity representatives / advocates are completely irrational I do not see another reasonable explanation for their behaviour.

Thanks so much for trying. We urgently need this to change.

 

[Trish]

I have spent quite a bit of time trying to address this in the last month or so. Sadly, I have to say that I have had a fairly hostile reception from the people who speak loudest. I have, nevertheless, had significant support from some others who struggle to be heard.

Are you referring here to clinicians or charity representatives?

 

[Jonathan Edwards]

Are you referring here to clinicians or charity representatives?

Charity representatives.

 

[Jonathan Edwards]

Could you elaborate a little on the rationale the 'people who speak loudest' give for supporting more funding & resources for the psychobehavioural clinics?

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. 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.

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'.

 

[Utsikt]

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.

Realism or pragmatism seems to be the default defence for the associations, the same is seen in Norway.

I almost looks like an occupational injury for advocates - they end up focusing too much on what the people in power will accept and too little on what’s actually needed.

 

[V.R.T.]

So realism in this context is leaving us to the wolves? I quite literally despair.

 

[John Mac]

By David Tuller, DrPH

As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional disorders, whatever they are—but that’s not what the words mean in this combination.

Moreover, the journal can’t seem to decide on the right label for the phenomenon it is exploring. While the special section title refers to “functional disorders,” the headline of the editorial introducing the project refers to “enduring symptoms”—a phrase I hadn’t seen used before in this context. (Has anyone else?) Mixing it up further, the editorial’s first sentence refers to “symptom-based disorders.” Are we all supposed to know whether these term are completely interchangeable?

Until like last week in the UK, the most popular collective label for this category of conditions of unknown etiology was “medically unexplained symptoms,” shorthanded to MUS. That name has now apparently fallen out of favor, like the earlier terms “psychosomatic” and “psychogenic”–which is actually what the recent and more neutral names still mean to a lot of medical professionals.

The lack of clarity in the terminology indicates how much the medical field still struggles to grapple with these complicated and difficult-to-treat syndromes and illnesses. Whatever the name, the category has generally included fibromyalgia, irritable bowel syndrome, functional neurological disorder, chronic fatigue and chronic fatigue syndrome, chronic pain, and any prolonged and disabling physical symptoms unexplained by known pathological mechanisms. Long COVID has now been lumped together with this group.

Trial By Error: Journal Publishes Confusing Section on "Enduring Symptoms" | Virology Blog

By David Tuller, DrPH As part of its December issue, Future Healthcare Journal, sponsored by the UK's Royal College of Physicians, has published a spec ...

virology.ws

 

[Hutan]

A comment in response to David's blog:


"Thanks for this David, that’s a nice analysis in the first two sections. For sure, people with ME/CFS don’t want what the Royal College of Physicians is so keen to sell – that is, the all-singing, all-dancing multidisciplinary clinics that, as you point out, actually aim to keep these people away from actual doctors, supposedly for their sake and so as to not clutter up the NHS.

I disagree with your last section though. Rather than a corrective to the narrative, a description of ‘enduring symptoms’ as causing ‘profound suffering, isolation and lack of medical support’ slots neatly into the RCP’s story. Those arguing for more multidisciplinary biopsychosocial services want to make the argument that there is a large unmet need. Most of the BPS proponents accept that the ‘medically unexplained symptoms’ can cause very severe disability; few would be unaware of the deaths of people with ME/CFS, for example. It is no coincidence that the RCP Special Edition included two papers offering the patient perspective, thereby suggesting that patients are fully behind their call for multidisciplinary clinics.

Dr Cheston’s concern about the stigma people with medical unexplained symptoms suffer (this being the focus of her PhD) actually aligns with that of BPS proponents. In recent years there have been papers and publicity initiatives from BPS proponents with much hand-wringing on how the stigma associated with a diagnosis of a ‘functional disorder’ (code for ‘psychogenic disorder’) can be reduced.

Yes, Dr Cheston’s call for more biomedical research is welcome, but again, the people promoting the ‘medically unexplained symptoms’ paradigm would not necessarily disagree. In fact, many of those people are currently awarded considerable government funds for biomedical research such as brain imaging with biased conclusions that support the BPS paradigm. The devil is in the detail (and in those who control what research teams get funded).

Therefore, unfortunately, Dr Cheston’s paper, while certainly well meant, serves more to further the interests of the BPS proponents than to correct their harmful views. What we need our advocates to say clearly at every opportunity is the point you make, David, in your second section. That is, there is no evidence that those multidisciplinary clinics with the rehabilitation programmes ranging from singing with the English National Opera or being at one with nature, various sorts of movement therapies, and the latest flavour of psychotherapy, actually work. Funding these clinics not only wastes money, but causes considerable harm by maintaining the fiction that there are effective treatments available to those patients who really want to be well. Of course, a paper saying that would not have found a place in this RCP Special Edition."

 

[Andy]

And for balance, David's comment in the main article on Katherine's article,

A corrective to the narrative

The same special section includes some important counter-programming to the biopsychosocial narrative–a piece called “A patient perspective on enduring symptoms – the unmet need.” The author, Katharine Cheston, a post-doctoral fellow in medical humanities at the University of Durham, provides a sharp and welcome dose of reality for readers unaware of the hell patients can go through.

Here’s an excerpt: “Drawing on qualitative interviews, the paper highlights the profound suffering, isolation, and lack of medical support experienced by this underserved population. It examines the systemic barriers to care, including stigma, the absence of follow-up services, and the traumatising nature of some healthcare encounters, which can lead to healthcare avoidance even in the face of potentially life-threatening symptoms…The sheer magnitude of the unmet needs is devastating: this population live with disabling and life-limiting symptoms, yet they feel alone and abandoned, receiving little to no institutional support, care or recognition of their suffering.”

Importantly, Dr Cheston recognizes that biomedical research is a core priority in order to really address patients’ unmet needs. She specifically mentions DecodeME, the groundbreaking genome wide association study spearheaded by a team from the University of Edinburgh; the investigators identified several regions of the genome associated with ME/CFS and published their findings earlier this year as a pre-print. As she notes, “The impressive initial results of the DecodeME study, which revealed a potential genetic predisposition to developing ME/CFS, indicate the huge potential for discovery in this field; providing dedicated, ring-fenced funding for biomedical research could produce the answers that this patient group desperately need and deserve.”

Dr Cheston’s piece serves as something of a corrective to other content in the special section. Perhaps her fellow authors will read it and learn something.

 

[Sean]

Funding these clinics not only wastes money, but causes considerable harm by maintaining the fiction that there are effective treatments available to those patients who really want to be well.​

And strongly implies, their claims to the contrary notwithstanding, their preferred psycho-behavioural narrative.

 

[Andy]

Rather than a corrective to the narrative, a description of ‘enduring symptoms’ as causing ‘profound suffering, isolation and lack of medical support’ slots neatly into the RCP’s story.

So the commentator is suggesting that, however our symptoms are described, we shouldn't point out the suffering, isolation and lack of medical support. Makes no sense to me.

Dr Cheston’s concern about the stigma people with medical unexplained symptoms suffer (this being the focus of her PhD) actually aligns with that of BPS proponents. In recent years there have been papers and publicity initiatives from BPS proponents with much hand-wringing on how the stigma associated with a diagnosis of a ‘functional disorder’ (code for ‘psychogenic disorder’) can be reduced.

Sorry, but this seems to be shade throwing to me, Implying that Katharine's concern for the patient population "aligns" her with the BPSers. It seems that the commentator requires all us advocates to keep extensive notes on what arguments the BPSers have used and not ever use the same words, as that would "align" us with them.

Therefore, unfortunately, Dr Cheston’s paper, while certainly well meant, serves more to further the interests of the BPS proponents than to correct their harmful views.

Hard disagree here, especially if the full article is read. Katharine obviously had to jump through hoops in regard to the wording used in order to get her article printed and in the circumstances she does a good job at talking about the reality of the situation for us patients. Tearing down the good for not being perfect, especially when it was never able to be, is pointless and ultimately self-harming to the larger cause.

 

[Trish]

Dr Cheston’s piece serves as something of a corrective to other content in the special section. Perhaps her fellow authors will read it and learn something.

So the commentator is suggesting that, however our symptoms are described, we shouldn't point out the suffering, isolation and lack of medical support. Makes no sense to me.

Sorry, but this seems to be a nasty bit of shade throwing to me, Implying that Katharine's concern for the patient population "aligns" her with the BPSers.

Hard disagree here, especially if the full article is read. Katharine obviously had to jump through hoops in regard to the wording used in order to get her article printed and in the circumstances she does a good job at talking about the reality of the situation for us patients. Tearing down the good for not being perfect, especially when it was never able to be, is pointless and ultimately self-harming to the larger cause.

I agree it's not Dr Cheston's fault that her valuable work laying out clearly how sick pwME are and how badly we are treated has been misused in this journal special edition. Of course it is important that patient's real experiences are made clear to medical providers and decision makers about our future care.

But I do think Cheston's work has been misused to prop up an argument for even worse NHS services. The editorial spells this out in detail, concluding that somehow this is the solution for such terrible suffering:

Services for symptom-based disorders should be focused on holistic and personalised management of a patient’s symptoms and distress, with the aim of improving function. They should be supported by a multidisciplinary team including peer support, social prescribing, social and employment support, and in-reach from specialist services including psychology to facilitate investigation of red flag symptoms or for escalation of treatment where required.

The editor has read the examples and explanation provided by Dr Cheston, and still somehow manages to conclude from reading it that what people suffering dreadfully with very severe ME/CFS should be provided with is social prescribing, employment support, peer support and psychological treatment.

The fault for this misuse of input about patients' suffering lies squarely with the editor and RCP. Doctors with such attitutes have misused patients stories for decades. They disregard patient surveys and twist patients stories to their own ends. I don't know how we can get past this. But it does need to be pointed out, I think.

 

[Hutan]

Tearing down the good for not being perfect, especially when it was never able to be, is pointless and ultimately self-harming to the larger cause.

I think you are missing the point @Andy. The context and the contribution the Cheston paper makes to the editorial narrative is important.

Barnes, the RCP officer, clearly had an agenda to push forward with BPS/BACME type clinics for the broad basket of MUPS. I don't know how the papers were collected, but it seems likely that it was thought useful to have 'the voice of the patient' present, not just for fibromyalgia, but also for ME/CFS. These papers contribute to a Special Edition that, in its entirety, creates a narrative of a substantial need for BPS/BACME type clinics.

Yes, it's okay to point out the suffering, even useful in some contexts, but I don't think the level of suffering is particularly disputed by the RCP and its journal readers. The Cheston article is a bit like us going along to a Liaison Psychology conference with the other speakers being White, Sharpe and Chalder and only talking about how awful it is to have ME/CFS. It might make some of the audience feel sorry for us and that something should be done, but, when the belief that what we need is exercise therapy and CBT goes unchallenged, it just might make people keener to get on with funding those BPS/BACME services. Our presence at that hypothetical conference would likely lead people to think that patients want what the BPS people are offering.

Those of us who participated in the NICE guideline development process know that the Royal Colleges made public some very strong views about the psychogenic nature of ME/CFS then. It only takes a little bit of googling to see that Barnes is leading a push for BPS/BACME clinics and that she is definitely moving in BPS circles. I think it was reasonable for an attempt to be made to engage with the RCP, but I think it was also possible to see that an article focussed on describing the suffering of people with ME/CFS would only further the RCP's agenda.

Katharine obviously had to jump through hoops in regard to the wording used in order to get her article printed and in the circumstances she does a good job at talking about the reality of the situation for us patients.

We asked Katharine in the preceding discussion if she had been constrained in what she wrote and she told us that she had not. Something can be of itself good, but can be placed in a context where it contributes to harm. I think that is what happened here.

 

[Nightsong]

(Perhaps we should have a separate "On the charities' support for the NHS psychobehavioural clinics" thread?)

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.

 

[Andy]

But I do think Cheston's work has been misused to prop up an argument for even worse NHS services. The editorial spells this out in detail, concluding that somehow this is the solution for such terrible suffering:

And that is not Katharine's fault.

The editor has read the examples and explanation provided by Dr Cheston, and still somehow manages to conclude from reading it that what people suffering dreadfully with very severe ME/CFS should be provided with is social prescribing, employment support, peer support and psychological treatment.

The fault for this misuse of input about patients' suffering lies squarely with the editor and RCP. Doctors with such attitutes have misused patients stories for decades. They disregard patient surveys and twist patients stories to their own ends. I don't know how we can get past this. But it does need to be pointed out, I think.

See above. With one article Katharine was never going to turn the BPS boat around, and to expect that from her (and by implication all other advocates) is unfair. But what might happen is that other readers of this journal issue, who might have previously held BPS supporting ideas, might just read her article and have their outlook influenced.

To get an accurate representation of certain impacts of ME/CFS on the lives of patients into this journal issue is something that should be celebrated, not torn down.

 

[Andy]

I think you are missing the point @Andy.

No, I'm not. I think you are.

We asked Katharine in the preceding discussion if she had been constrained in what she wrote and she told us that she had not. Something can be of itself good, but can be placed in a context where it contributes to harm. I think that is what happened here.

Yes, and she said that she had to use the enduring symptoms wording which seems to be the thing that you are hung up on. Personally I think you are making 2+2=11. In 2025 Chris Ponting presented at the BACME conference on results from the DecodeME questionnaire - I assume from your arguments that you condemn him for doing so as this would have been him contributing to the harm from BACME.

 

[Trish]

And that is not Katharine's fault.

I agree it's not her fault. I hope us all thinking about how articles can be misused is worth doing if only so in future some advocates may be able to add wording to articles that describe patients experiences to the effect that psychobehavioural approaches have been shown not to be effective, and have the potential to cause harm.

With one article Katharine was never going to turn the BPS boat around, and to expect that from her (and by implication all other advocates) is unfair. But what might happen is that other readers of this journal issue, who might have previously held BPS supporting ideas, might just read her article and have their outlook influenced.

I hope you are right that readers will learn more and possibly even investigate more deeply.

 

[Hutan]

Yes, and she said that she had to use the enduring symptoms wording which seems to be the thing that you are hung up on. Personally I think you are making 2+2=11. In 2025 Chris Ponting presented at the BACME conference on results from the DecodeME questionnaire - I assume from your arguments that you condemn him for doing so as this would have been him contributing to the harm from BACME.

I'm not hung up on the 'enduring symptoms' wording at all. I don't understand your point about that.

Being present at a BACME conference is, in itself, totally fine. What matters is what you say there. If all the other speakers at the conference are saying 'these people need multidisciplinary clinics with CBT to change the way they think' and Chris Ponting just stood up and elaborated on 'having ME/CFS is awful', that would not have achieved anything good. If he had done that, it may just have encouraged the BACME people to work harder at bringing their brand of salvation to the people with severe ME/CFS.

On the other hand, presenting some credible research results that might make some of the BACME people reconsider the appropriateness of their treatments and paradigms is useful and I'm sure that that is what he did.

 

[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.