A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

[forestglip]

Honestly, @Hutan, I think comments like this are incredibly unhelpful - and, frankly, quite unfair - unless you can also detail precisely how you would have done both of these things, in 1200 words or less, making reference to no more than 10 articles.

I added this edit to a post above just now:

Edit: I suppose just adding a sentence linking to a good source that has already gone over it?

Maybe someone can come up with one good reference that could be used for one good sentence. Trying to write an example - the first sentence is from the conclusion, and I added the second.

Developing a training programme for clinicians could prevent the kind of traumatising clinical encounters that left some of my interviewees feeling they needed to avoid healthcare at all costs. But it must be kept in mind that the specific type of clinical care patients receive matters, as evidence indicates that interventions which are inappropriate for a given patient, such as GET for conditions with PEM, can greatly exacerbate enduring symptoms.

 

[kacheston]

Because that was not done, the paper helped set up the enduring symptom problem as one of a serious impact on people's lives that is not being met by care. That then allowed the other papers to present the solution - basically business as usual but more of it, and with the health care workers trained in not being stigmatising.

I also want to really push back against this inaccurate claim.

This is categorically not what happened. I was part of these discussions; I can say this with certainty. Look at any special issue in this particular journal and you will see that there is a 'patient perspective'. They all make claims of differing strength and have different emphases. It is simply a required part of the format. They are not setting up the 'unmet need' so as to present the solution.

 

[Utsikt]

Honestly, @Hutan, I think comments like this are incredibly unhelpful - and, frankly, quite unfair - unless you can also detail precisely how you would have done both of these things, in 1200 words or less, making reference to no more than 10 articles.

Was it ever an option to not publish?

 

[Jonathan Edwards]

There was a choice in the paper

Not for Katharine by any length of rope, I fear.

 

[StellariaGraminea]

The problem is, Katharine's article is not fundamentally misaligned with those other articles.

Do people often read these collections as a unit? If not, I am less worried about this serving to bolster the BPS case.

I can't speak for doctors but as a clinician in a different area of healthcare, how a group of articles are 'aligned' or otherwise in a special issue has never been something that I've considered important. Usually I or my colleagues would pick an article or two of interest to focus on. Rarely read the whole issue. If say, I landed on an article like Katharine's and thought "That's interesting, never considered that, would like to know more..." it's a lot more likely I'd look up her other publications as well as looking at the publications she quotes and go from there.

I've only very occasionally read several (i.e. more than one single one that I'd specifically sought out) articles in special issues like this (again topics nothing to do with our current one) and dismissed several as not being very convincing. I guess what I'm trying to say is that BPS ideologues may read the whole thing and nod along in their own entrenched worldview way at everything they read. They're not going to change their minds regardless.

Everyone else who, hopefully, is more open to learning, is more likely to dip in, perhaps read K.'s article and be triggered to reflect a bit more about the topic. I'd hope it might provoke a little "shock and concern" like the in-person meetings, though that might be less likely. But it may prompt some to research the topic more and at least consider their previous position.

To me, it seems like a step in the right direction to have this article published, and a bonus that it's taking up a (funded?) spot that would otherwise perhaps be pure BPS nonsense if Katharine hadn't been the person they happened to reach out to.

Yes, this. And the article itself signposts to other articles + the author... and anyone interested can follow the trail & read a further debunking of BPS approach as they go.

 

[rvallee]

No, that is a strawman. There a lots of diseases that we do not know the pathology of that are still treated as diseases.

True. It would be more accurate that this is why they say it's not a disease, despite concluding otherwise in other cases. I don't know if they really do consider those other issues without a known pathology to be diseases, or simply syndromes that they respect and fear. As @Trish noted, the definition of a disease demands a pathology, but something doesn't need to be called a disease in order to be taken seriously.

The truth is that medicine is super weird about some things. Septic shock is not a disease, and yet is taken very seriously. Which really places us in a bind. It's a situation we can't really win, but the issue of using some of the common language isn't so much about accepting a point of view over another, rather than being about "we are talking about x", which is an issue that comes up repeatedly with ME, CFS, ME/CFS, chronic fatigue syndrome, and however people want to call it. We have to settle on the very imperfect ME/CFS simply because fundamentally names are all about "you and I are talking about x, OK?".

We're not "speaking their language" here, we're doing the equivalent of meeting an alien species and pointing and naming things just to build a common understanding, and medicine isn't using scientific language when it comes to us, so we are double bound by all of this, a situation we can't win and they can't lose. The language of psychosomatic ideology is atrocious, and mostly on purpose, as they need to use duplicitous language because their stuff is all labels and no substance.

 

[Hutan]

Isn't the latter a much bigger task that requires evidence that would be hard to fit inside an article of this length? The former is recounting symptoms from patients. The latter requires evidence of causality.

No, I think as you have concluded, it isn't a big task to comment that BPS treatments and clinics have no evidence to support them. It can be done in a few sentences but I think it probably deserves more here. We could labour to produce the perfect sentences, but the opportunity has passed. The first step is understanding that the special issue is not better for us with the patient perspective article and is probably worse.

Honestly, @Hutan, I think comments like this are incredibly unhelpful - and, frankly, quite unfair - unless you can also detail precisely how you would have done both of these things, in 1200 words or less, making reference to no more than 10 articles.

It s a matter of priorities. I am saying that many BPS proponents and doctors in general are happy to acknowledge that the person in front of them is living a very restricted life. That is not the key message we need to get out. There are doctors who have denied their non-eating patients assisted nutrition, who prescribed graded exposure to light, to sound to incredibly disabled people.

I believe that an important message at this time is that current dominant approaches don't work. I don't think it is reasonable to say that there was no room for that message. There was a whole section about the lack of care that could have been substantially cut down, because lack of specific care is rather less the problem than a medical mindset that provides harmful care. People would not have died if doctors didn't see someone not eating and think that withholding assisted nutrition was the way to fix them.

In the BPS mind, the more sick the individual, the bigger the patient need, the stronger the argument for the type of care that they provide.



The Editorial
I'm struggling to understand why more people don't have the concerns I have. I think we need to look closely at the editorial by Theresa Barnes. Maybe some of the people who think what happened is fine have not yet read it? Unfortunately, Katharine's article contributes to the narrative arc of the editorial, even if readers don't actually read her article, or the other articles:

It starts

Clinicians in every field will recognise the significant prevalence and importance of conditions which cause persistent symptoms and significant distress to patients in the absence of a simple structural explanation for these symptoms. These conditions have variously been referred to as ‘medically unexplained’, ‘functional’, ‘somatic’, ‘symptom based’ or ‘enduring’.1 They can occur alone as a primary disorder or, as is increasingly recognised, can be associated with other long-term conditions.

Barnes is clearly acknowledging that understanding the size and the gravity of the problem is not the issue here. she says clinicians recognise it.
She goes on to cite the patient perspective as illustrating the unmet needs.

In this edition, the unmet needs of patients are clearly articulated from a patient’s perspective by Helen Robinson, who gives a first-person account, and Katharine Cheston, who thematically explores the experience of patients with enduring symptoms in the context of myalgic encephalomyeitis (ME).2,3

She explains that the cause of the symptoms is highly complex and involves an interplay of biopsychosocial mechanisms. She directs readers to the articles that strongly promote BPS ideology.

She calls for holistic multidisciplinary care

the absence of appropriate multidisciplinary services make it difficult to offer comprehensive support. The inability to access the necessary teams or services means that clinicians may not be able to provide the holistic care that these patients require, ultimately affecting patient outcomes.

She strongly makes the case for limiting referrals and investigations.


This is the point of the special edition, the call for the type of services that so many of us are concerned about, a call for the flourishing of the BACME approach:

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.

Ultimately, the aim is to reduce costs

We may legitimately ask, can we afford to commission these services? I would argue that we can’t afford not to. These disorders have significant implications for health services and society as a whole. We need to innovate models of care which can be cost effective. We need to move at pace to fully quantify the impact of these, often hidden, conditions so that we can demonstrate the cost utility of providing services to address them.

So, Katharine's article is used by Barnes to implicitly suggest that patients need these services. I know it's not what Katharine wrote, but neither did she refute it. I expect the editorial and content like it will be being used to advocate for more resources for BACME style clinics. I fear that editorials and special issues like this one will help that approach spread outside the UK.

I also want to really push back against this inaccurate claim.

This is categorically not what happened. I was part of these discussions; I can say this with certainty. Look at any special issue in this particular journal and you will see that there is a 'patient perspective'. They all make claims of differing strength and have different emphases. It is simply a required part of the format. They are not setting up the 'unmet need' so as to present the solution.

As the editorial narrative shows, the patient perspective was used to illustrate the unmet need. For whatever reason, Katharine's article did not argue against the overall narrative of the special issue. Katharine says that the reason is because there wasn't space. And I'm saying, there was space if it was believed that it was important to not be part of Barnes' narrative.

I know Katharine is not a fan of the BPS paradigm, I know she meant well. We all get things wrong. I just want her and others to understand how this effort went wrong, so that we can avoid further supporting the BPS lobby. It is clear, looking at this special issue, looking at the actions of organisations such as the MEA, that the BPS lobby is extremely active and very effective right now.

 

[forestglip]

I'm struggling to understand why more people don't have the concerns I have. I think we need to look closely at the editorial by Theresa Barnes. Maybe some of the people who think what happened is fine have not yet read it?

Glancing at it right now. Yes this is why I am confused by the 'enduring symptoms' or 'symptom-based disorders' terms:

The cause of these symptoms is highly complex and currently incompletely understood. They involve an interplay of biopsychosocial mechanisms.

The definition in Katharine's paper seems like it would include basically any chronic symptoms that aren't yet understood (i.e. would have included MS and Parkinson's in 1830, and who knows what unknown diseases it includes today). But Theresa Barnes is talking about this as if it is a group of disorders with a relatively homogenous mechanism that just isn't quite characterized fully yet, but is known to include biopsychosocial components.

So I just don't even know what the definition of 'enduring symptoms' or 'symptom-based disorders' is.

 

[Utsikt]

We're not "speaking their language" here, we're doing the equivalent of meeting an alien species and pointing and naming things just to build a common understanding, and medicine isn't using scientific language when it comes to us, so we are double bound by all of this, a situation we can't win and they can't lose.

I don’t agree with that analogy. The concept of diseases are not foreign to them. And most of the BPS proponents have demonstrated sufficient clarity of thought in other contexts.

The problem, as you say, is that the use labels on purpose. To obfuscate. To disguise the abuse.

The language of psychosomatic ideology is atrocious, and mostly on purpose, as they need to use duplicitous language because their stuff is all labels and no substance.

If there is no substance to the labels, why should any intelligent argument use the labels? That argument would have no meaning if what it’s referring to is made up.

 

[Utsikt]

So I just don't even know what the definition of 'enduring symptoms' or 'symptom-based disorders' is.

It’s whatever they want it to be. Always has been and always will be.

Which is why we have to stay away from it because it will never serve our purpose.

 

[SNT Gatchaman]

I think it quite likely that all the papers except Katharine's have been held back from the journal link because they might 'upset the difficult children'. Certainly the Burton discussionis likely to have been considered 'best kept quiet'.

I think that's probably technical, not nefarious. The canonical URL in the metadata includes the port number 5037 which is very odd. It is also inaccessible, at least externally, so this may just be temporary staging server links and things haven't quite coalesced into their final form.

That focus on persisting symptoms takes away from the concept of a disease that has a pathology to be found. It's like calling ME/CFS "chronic fatigue".

Indeed, Ellis says exactly this in the for/against piece —

Symptom-based disorders include conditions like fibromyalgia, chronic fatigue and irritable bowel syndrome, which present with persistent, distressing symptoms that tend to cluster and are not well explained or treated by the dominant medical model.

I've read the thread and don't have any specific comments that haven't already been made. Currently our situation remains One Battle After Another.

One day things will change. They have to.

Yep, stepwise, as biological findings become clearer. The BPS stalwarts standing on ever smaller pieces of paper, holding their arms out against the tide of publications, trying to continue to live the life they love.

 

[Hutan]

I thought it might be useful to know some more about Dr Theresa Barnes - the author of the Editorial

Royal College of Physicians - Clinical Lead for Outpatients
A rheumatologist - I wonder @Jonathan Edwards if you know her?
And the RCP lead on Outpatients Services

Dr Theresa Barnes is a consultant rheumatologist and associate medical director at the Countess of Chester Hospital Foundation Trust for clinical services, which includes outpatients.

Theresa provides overarching clinical leadership for the work to develop and implement guidance and good practice principles for modern outpatient care, which has included work to partner with NHS England to develop a strategy for outpatient care in 2023.

Countess of Chester Hospital will be familiar to people who have been following the Lucy Letby case.


RCP Prescription for outpatients - reimagining planned specialist care 2025

It's mostly sensible but some sounds similar to what is planned for ensuring symptom services: more training of specialists, more use of technology, multidisciplinary clinics, getting non-doctor health professionals to take on tasks,
Realising this vision means shifting from standardised appointments to personalised pathways, where patients take an active role in their health. This approach includes tailoring care to individual needs, respecting delivery preferences, and recognising complexities such as comorbidities and psychosocial factors. Personalised care must account for factors like cultural background and neurodiversity that influence engagement with services and contribute to health inequalities. Clinicians must have the digital tools, administrative support, and workforce planning to deliver safe and effective, integrated, multidisciplinary care.

Delivering more care in the community5 must not mean shifting work onto overstretched primary care teams. What is needed is a genuinely integrated approach, where planned care is delivered closer to home with primary care, supported by specialist input, digital infrastructure, and well resourced community services.

For too long, outpatient care has been overlooked in policy. We cannot meet the health needs of an ageing population or support people with multiple long term conditions without reform. Reformed outpatient care is essential to shifting to proactive care, enabling prevention, early intervention, and reducing demand on acute services—but only if delivered collaboratively.

Faculty of Liaison Psychiatry - 2025 conference
Persistent physical symptoms in outpatient care: RCP and liaison psychiatry Interface - 11.00 am Dr Theresa Barnes
Part of Plenary 4 - Medically Unexplained Symptoms

(Plenary 5 was Factitious Disorder (feigning); Plenary 6 was High Intensity Service Use)
I don't know if anyone can watch that presentation by Barnes?


So, Theresa Barnes is definitely committed to the BPS cause and looks to be planning to overhaul services for Persistent Physical Symptoms.

 

[Jonathan Edwards]

I have never heard of Theresa barnes but it certainly looks as if she has taken up the Newspeak in no uncertain terms in order to decorate her curriculum vitae. I cannot think of anything more meaningless than being RCP lead for outpatients. (Oh yes - Persistent Physical Symptoms.)

 

[MSEsperanza]

Indeed, Ellis says exactly this in the for/against piece —

Apologies -- only able to skim and just popping in -- what a weird pro/contra debate that is between Burton and Ellis (another Rheumatologist?)

Ellis:
"The evidence is clear. People with symptom-based disorders don’t benefit from being ‘sliced and diced’ by traditional medical models focused on identifying and treating specific pathological processes. What people need – what the NHS is well placed to deliver and increasingly provides – are services emphasising long-term, trusting relationships with healthcare teams, clear explanations of these confusing, distressing and disabling symptoms, and support to achieve personal goals and priorities, in line with people’s values and beliefs."

(Bolding added.)

How can you provide clear explanations of something that is acknowledged to not be understood yet?

Also the edior-in-chief's ( Andrew Duncombe) editorial acknowledges:

"Reading the patient perspectives in the issue and listening to friends’ testimonies, I was struck by how much waiting is a key frustration of these patients’ lives: waiting for a diagnosis, waiting for explanations, waiting for recognition, waiting for support and treatment, and waiting in hope for recovery. Apart from the human cost of the suffering to patients and their families, most of those affected are of working age, so the economic cost of lost productivity is substantial. Given all this, it is perhaps most surprising that there has been so little high-quality research in this area, nor the funding to facilitate this. We hope you gain new insights from reading these articles in this issue."

On funding, I only had a look at Buton's COI in the pro/contra article and didn't understand in which way it applied to his contribution to the special issue.

@kacheston -- sorry not able to read your paper in detail, just would like to thank you that you're engaging with people's thoughts here.

Is there a chance that you could write a comment on how you see your contribution now in the context of the whole issue? Maybe that would be a helpful addition?



P.S: Should we have a separate thread for the editorials and some of the articles? (will report my post to moderators)

P.S: Just saw: I think Helen Robinson's patient's perspective could deserve an own thread, too?

 

[MSEsperanza]

Need a break now and won't be able to return for a while so just leave another unfinished comment here:

I thought Adreas Goebel's piece on 'Future healthcare for patients with the common pain disorder ‘fibromyalgia syndrome’ – fundamental changes based on the discovery of an immune cause', even if could have been more of an actual "contra" was also a bit weird. Not able to comment more than quoting him and wondering if they really found a probable mainly immunological mechanism for Fibromyalgia? If yes, it's still strange how he meanders in presenting his findings and reflections:

Goebel's promising abstract:

"Recent laboratory advances have allowed re-conceptualising fibromyalgia syndrome, a common, severe chronic widespread pain condition, as an immune-mediated disease. This article summarises key findings and their implications for preventative strategies and future healthcare advances and their costs."

The biomedical research claims are beyond my capacities, but then...

...there are Goebels reflections on The role of mind–body unity in explaining how FMS starts – evidence for a new paradigm, and what this means for future preventative medicine seems - NOt able nowt o quote the relevant bits, but that section seems quite muddled?

 

[Sean]

From the editorial:

These conditions represent dysregulation rather than damage or degeneration,

How do they know this? It might be, but the science is nowhere near being able to state it with such certainty.

Patients are often left feeling that there is little hope of improving their symptoms or regaining function.

For very good reason. Decades on and there is still no confirmed treatment, let alone cure.

Also think the use of the term 'feeling' is highly inappropriate and dismissive, intentionally or otherwise. It is a standard part of the psychosomatic framing to reduce it all to patients' (mis)perceptions, and for the professionals to avoid facing up to how little is actually reliably known.

The cause of these symptoms is highly complex and currently incompletely understood. They involve an interplay of biopsychosocial mechanisms.

Again, how do they know the cause is "highly complex"? I would also argue that it is more than merely "incompletely understood". It is barely even recognised as a real problem, let well described, and the underlying mechanisms are not understood at all.

Hence I have no idea how they can then claim that they understand at least enough to assert so definitively that it involves "an interplay of biopsychosocial mechanisms". That is pure propaganda.

------

I would take these people more seriously and grant them more respect if they simply said: We don't know what is going on here. We have no clear or useful explanations nor answers. We barely even have some vaguely plausible ideas.

It would be a much more productive starting point for discussions, and certainly a much more honest one.

At this stage they are just being dragged kicking and screaming into making the most minimal of concessions about the reality of the situation, and what is required to constructively progress.

 

[kacheston]

The Editorial
I'm struggling to understand why more people don't have the concerns I have. I think we need to look closely at the editorial by Theresa Barnes. Maybe some of the people who think what happened is fine have not yet read it? Unfortunately, Katharine's article contributes to the narrative arc of the editorial, even if readers don't actually read her article, or the other articles:

So, Katharine's article is used by Barnes to implicitly suggest that patients need these services. I know it's not what Katharine wrote, but neither did she refute it. I expect the editorial and content like it will be being used to advocate for more resources for BACME style clinics. I fear that editorials and special issues like this one will help that approach spread outside the UK.

As the editorial narrative shows, the patient perspective was used to illustrate the unmet need. For whatever reason, Katharine's article did not argue against the overall narrative of the special issue. Katharine says that the reason is because there wasn't space. And I'm saying, there was space if it was believed that it was important to not be part of Barnes' narrative.

I know Katharine is not a fan of the BPS paradigm, I know she meant well. We all get things wrong. I just want her and others to understand how this effort went wrong, so that we can avoid further supporting the BPS lobby. It is clear, looking at this special issue, looking at the actions of organisations such as the MEA, that the BPS lobby is extremely active and very effective right now.

I wanted to respond, again, with a point of fact.

Have you read many editorials for special issues, @Hutan? I'm sure many members of this forum are familiar with the format, but for those who are not: these editorials are written to summarise all of the papers in a special issue. They have to mention every paper. The author goes through each paper in turn and explains what the author argues.

The mention of my paper here is not some grand conspiracy - it's not a sign that I'm part of some 'narrative arc', used as a tool (or as a 'pawn', as I was told earlier on this thread) in service of BPS ideology. It's not implicitly suggesting anything other than that its author is following the format of an editorial for a special issue. Look at any special issue of any journal and you will see the authors of editorials following this exact format.

I've explained multiple times on this thread why I wrote this paper in this way. I've also told you that I have, quite literally, written a book critiquing the BPS narrative. Had I not spent most of yesterday on this forum responding to what were deeply unpleasant and hurtful comments (the worst of which have now thankfully been removed), I would - and the irony is staggering - have been drafting a paper in which I extend these critiques.

I'm logging off indefinitely now. I'll return to the forum in relation to my work on the Big Survey, but I won't be engaging further with any other discussion, on this thread or others. You are of course more than welcome to get in touch with me via email at any point (katharine[dot]cheston[at]durham[dot]ac[dot]uk).

With that said, I wanted to quickly thank all S4ME members who have engaged in productive, constructive discussion - and who have given me much food for thought and genuinely helpful feedback, which continues to shape my work - on this thread as well as others.

 

[Trish]

Moderator note:

This thread is temporarily closed for moderation review.