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, Katherine'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.