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

[kacheston]

Katherine, I know it feels nice to be on the inside, party to conversations that the average patient is not. I know there's the thought that being "reasonable" and conciliatory is the way forward. But, with people deeply committed to the BPS paradigm and with the power they continue to hold, it just doesn't end well. It's harsh of me to say that, I know, and I know you are trying to do good things. But, there's a lot of politics at play.

Honestly? It doesn't - and didn't - feel nice, in the slightest.

I have very good reasons for not saying more, on this forum. I'm sorry that I can't, and I recognise that this evokes suspicion, 'major alarm bells', etc.

I'm not misguided, I'm not ill-informed, and I'm well aware of all the politics at play: I've studied them, full-time, since 2019; and prior to that did what I could to directly intervene in them, through other means, including e.g., organising a Millions Missing demonstration in Bristol in 2016.

I totally understand the justifiable anger about this, but I'm really not who this should be targeted at.

 

[kacheston]

This article is good, although I think if it's intended for doctors the anecdote about the teeth is the exact sort of thing more callous doctors who believe we're all hypochondriacs tend to laugh at.

No one laughed at this. I would never position quotes from the people I interviewed - people I deeply care about, whose testimony I feel incredibly privileged to be entrusted and to work with - so that they could be laughed at.

Perhaps this is not what you meant - but I find this insinuation deeply insulting, so felt I needed to clarify with the above.

 

[Trish]

I think people need to be clear here that the problem here is the RCP and BPS people, not Katharine. She has shown multiple times in this and other actions that we have discussed on the forum, that she is absolutely on our side and working hard to fight our cause with very sensitively and carefully curated evidence and well written articles.

 

[V.R.T.]

No one laughed at this. I would never position quotes from the people I interviewed - people I deeply care about, whose testimony I feel incredibly privileged to be entrusted and to work with - so that they could be laughed at.

Perhaps this is not what you meant - but I find this insinuation deeply insulting, so felt I needed to clarify with the above.

That is not what I am saying at all. I don't doubt your good intentions.

I am saying that the physicians who mistreated me, and the vast amounts of physicians who agree with them that pwME are delusional hypochondriacs, would laugh at that anecdote - some doctors have a very cruel sense of humour, especially about those they deem not deserving of care.

 

[Hutan]

Among the other contributions to this issue there is a debate between Burton & a rheumatologist at Imperial about "services for patients with symptom-based disorders":

https://www.sciencedirect.com/science/article/pii/S2514664525002619

Yes, those articles by Burton and Ellis are truly awful, full of misrepresentation of studies that did not in fact find what is claimed.


Trish and Katherine, Katherine's mostly fine article has been commissioned and used to
1. provide a veneer of 'we are listening to the patients', and
2. help highlight the unmet need for better care, in order to bolster a model of care that does not work.

Unfortunately, the article won't be moving people away from BPS thinking. It can't be assessed in isolation, away from the purposes for which the proponents of BPS ideology have put it to.

Perhaps something different, something good happened in the process of producing the article, but, in the absence of that information, we can only evaluate the impact on the basis of the group of articles we see. I think the outcome is mainly that readers will see us as needy, and specifically needing the care of multidisciplinary teams ready to do the social prescribing.

 

[StellariaGraminea]

Yes, your link gets straight there. I wonder if you have some sort of approved entry. Via the OP link I have to go through a robot check and get nothing but yours.

I'm not having any issue getting through to seeing all the journal items & don't have any special link.

 

[kacheston]

Trish and Katherine, Katherine's mostly fine article has been commissioned and used to
1. provide a veneer of 'we are listening to the patients', and
2. help highlight the unmet need for better care, in order to bolster a model of care that does not work.

I just wanted to clear up a few points of fact:

The article was not commissioned. It was an invited submission. This meant that I was asked if I wanted to write the 'patient perspective' (which, as I explained in another comment, is a specific type of article FHJ include in all issues) and I agreed. I submitted an abstract for the article - exactly as I wanted to write it, with absolutely no external influence, from anyone (RCP or otherwise). Had I had to divert from this abstract, and write a different kind of article with a different kind of emphasis, I would have pulled out. (I'm not looking for a career in academia, so the 'publish or perish' mentality doesn't apply here - but also, these shorter articles count for nothing in terms of academic metrics like REF.)

As far as I know, multiple (or it could have been most, or all) people involved in the scoping project were invited to submit articles. This is typically how special issues of journals are brought about.

I did not engage with RCP as a patient. I did not disclose my own experience. I engaged, and was invited to take part, as a researcher - so 'the veneer of "we are listening to patients"' does not apply.

In response to point 2, the first half of your sentence is correct. The second half, however, is your own supposition. I believe you are wrong - and, of course, I am privy to information that you are not. I was also able to clarify the situation, via virtual meeting as well as via email. Had I thought in any shape or form that this would be how the article was intended to be used, I would not have written it.

 

[StellariaGraminea]

I think people need to be clear here that the problem here is the RCP and BPS people, not Katharine. She has shown multiple times in this and other actions that we have discussed on the forum, that she is absolutely on our side and working hard to fight our cause with very sensitively and carefully curated evidence and well written articles.

Agree entirely. I greatly appreciate having Katharine on our side. Have read a number of her writings / interview and there are few who have such an in-depth and nuanced understanding of the issues, including the politics, as well as the compassion and care to advance this topic. Of course it would be inappropriate to divulge private meetings where discussion wasn't formally minuted & there hadn't been prior agreement that discussions be made public.

The main issue is the BPS people who are entrenched in their own worldview, I don't see that Katharine's article in any way supports that erroneous view and rather points out that patients have been painfully harmed by it. Someone said the article could be misused to support a nefarious BPS agenda. While, any article can be misused in any way outside the control of the author, and that would not be the author's fault, I see it rather as a helpful article to those who are trying to counter the bps agenda.

I completely understand and share the lack of trust towards the RCP and BPS proponents. It feels like constant fire-fighting from a position of weakness as they are in all the powerful political positions and also have the upper hand in the fact they largely represent the inertia of the status quo. There's a sense of wondering what new underhand activities they're getting up to on this subject... Feels like a conspiracy theory to say it, but that's what it feels like.

 

[MEMarge]

Thank you so much @kacheston for taking this opportunity.

 

[Hutan]

I submitted an abstract for the article - exactly as I wanted to write it, with absolutely no external influence, from anyone (RCP or otherwise).

But you told us upthread that you were required to add a paragraph to the article about the terminology, which promotes the terms medically unexplained and functional symptoms as 'widely used in clinical literature'. And, even your abstract, which you say no one influenced, uses the term 'enduring symptoms'. 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".

so 'the veneer of "we are listening to patients"' does not apply.

The article is very much presented as 'the patient experience', and you yourself say that you were asked to write the 'patient perspective'. This is what the editorial says about the patient experience articles:

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

It makes no difference whether you were invited to produce the 'patient perspective' as a patient or as a researcher. It still sends a message of 'we have listened to the patients, and they want more care'.


I understand that your intention was not to bolster current harmful models of care. I wonder, were you able to read all of the articles in the special edition before consenting to your article being published?

We, like the other journal readers, are able to read your article in context of the others, and yes, in that context, the essay does contribute to the case for more BPS care. I know that is not what you intended, or even really what you wrote. But, the interventions that were made to your article, and the context, very much make it so.

 

[kacheston]

But you told us upthread that you were required to add a paragraph to the article about the terminology, which promotes the terms medically unexplained and functional symptoms as 'widely used in clinical literature'. And, even your abstract, which you say no one influenced, uses the term 'enduring symptoms'. 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".

Yes, these sorts of suggestions are typical at the point of peer review. These are suggestions made at the point of the text, not at the point of framing the article. I was open to the former (you have to be, this is absolutely part of the process of publishing an article); I would not have been open to the latter.

This is the relevant paragraph:

Since 2019, my research has focused on ‘enduring symptoms’. These are chronic, often debilitating symptoms and syndromes for which medical evidence of disease cannot yet be found; they are typically described in the clinical literature as ‘medically unexplained’ or ‘functional’ symptoms.​

You will see, quite clearly, that nowhere here do I promote these terms. It is a statement of fact that these so-called 'enduring symptoms' are typically described in the clinical literature as 'medically unexplained' or 'functional' symptoms. Those are simply the terms that are used, most commonly, in the literature. We might not agree with them, but that is the truth. I state this truth in this paragraph.

I also explicitly make reference to disease - 'yet' being the operative word: '...for which medical evidence of disease cannot yet be found'.

 

[Hutan]

Here's another of the articles:

Challenging Myths: Debunking Functional Disorders
Breaking barriers in the education of persistent physical symptoms

It's deeply ironic that the special edition title is 'challenging myths'. The first paragraph of the abstract runs as follows:

Persistent physical symptoms (PPS) account for around 45% of all primary care consultations, and are associated with significant disability and costs. While not always the case, co-existent mental health difficulties can often present alongside PPS. Individuals suffering from PPS may present with psychological symptoms such as rumination and catastrophising, as well as early adverse childhood events. Research has shown that adequately understanding and managing psychological factors associated with PPS can prevent symptoms from being more chronic and disabling.

The article goes on to explain that PPS are the same as Medically Unexplained Symptoms, that is "distressing physical complaints which are not explainable by medical examination or investigations".

The whole special edition is a BPS fest, weirdly labelled as 'Challenging Myths: Debunking Functional Disorders'. It's a nightmare.

 

[Utsikt]

Re: the definition paragraph (“enduring symptoms”) – this was specifically requested at peer-review. It’s not the kind of language I would have used, were I not writing within these confines.

I think this is seriously unhelpful, and probably harmful.

If we want ME/CFS to be taken seriously, we have to move away from ME/CFS being perceived as something the patients say or think that they have, towards ME/CFS being perceived as a legitimate disease in its own right, and treated accordingly.

However, personally I think there’s something powerful about using their language – engaging, quite literally, on their terms – and to do this in order to show readers the realities of these illnesses: that someone can be so severely ill, completing a 90-minute interview takes 18 months; that people are bedbound, tube-fed, without any regular NHS support.

But you are (edit for clarity: unintentionally) allowing this extremely vulnerable patient to be used as a pawn to further distance ME/CFS from being a disease - and therefore not treated as one.

Why is that they are only allowed to tell people about their experiences in this journal if they label it as «not a disease»? It’s like not allowing women to speak up about «sexual harassment» or «abuse» under MeToo and insisting on saying they have experienced «boys being boys».

I understand that this was not your intention, but the people behind this have managed to use your name and credibility to legitimise the continued failings of the system.

I would seriously consider asking for the article to be retracted. You don’t want to be anywhere near this special issue.

 

[Jonathan Edwards]

Research has shown that adequately understanding and managing psychological factors associated with PPS can prevent symptoms from being more chronic and disabling.

This is why Maeve Boothby O'Neil died.
It is essential to see the deceit and incompetence involved.

 

[Hutan]

This is the relevant paragraph:

Since 2019, my research has focused on ‘enduring symptoms’. These are chronic, often debilitating symptoms and syndromes for which medical evidence of disease cannot yet be found; they are typically described in the clinical literature as ‘medically unexplained’ or ‘functional’ symptoms.

You will see, quite clearly, that nowhere here do I promote these terms. It is a statement of fact that these so-called 'enduring symptoms' are typically described in the clinical literature as 'medically unexplained' or 'functional' symptoms. Those are simply the terms that are used, most commonly, in the literature. We might not agree with them, but that is the truth. I state this truth in this paragraph.

Presumably the 'chronic, often debilitating symptoms and syndromes for which medical evidence of disease cannot yet be found' encompasses ME/CFS? The clinical literature abounds with references to ME/CFS. Yes, in BPS circles, ME/CFS can be described in the clinical literature as 'medically unexplained' or 'functional symptoms'. In non-BPS literature, it is not, ME/CFS is typically described as ME/CFS.

Your paragraph normalises the terms, it makes those BPS terms acceptable and recognised as standard in the authoritative world of clinical literature. By mentioning the terms, without any hint of censure, they are promoted.

They made you a researcher of 'enduring symptoms' instead of a researcher of ME/CFS and other named conditions.

We need to push back against the collecting up of diverse symptoms and syndromes into a 'medically unexplained symptoms' bucket. Those terms are not the path to enlightenment. While our syndromes, our diseases remain grouped as MUS, there are not being researched appropriately.

I'm sure this isn't comfortable.

You have a right to feel aggrieved at the way the journal has treated you. I assume you would not have agreed to have your article included if you had known what company it would be keeping or had understood the impact of the changes you were requested to make. They have misused your goodwill. I'll leave it there.

 

[rvallee]

I thought it was pretty good. It certainly did better at capturing the experience of chronic illness than the entire biopsychosocial literature. It's easy to do better than a burning hole in the ground, so it doesn't take much, but it managed to do it. Most of the criticism I see so far is mostly about contrasting the traditional framing out of medicine but being lenient about it.

Perhaps it would have been better to specifically note that it is those pushing psychosomatic theories who apply those vague terms to a diverse range of symptom groups, with the main common feature being that the diagnosing doctor is currently unable or unwilling to find evidence of a physical medical pathology.

Such as this. This is not the framing of a few ideologues, easily 95% of physicians agree with this and apply this in their clinical practice. The problem is not and has never been "a few bad apples". It's the bunch that is spoiled, so much that you can swap all the apples and they will still rot, because the rot is inherent to the system/bunch.

If none of our current biopsychosocial overlords had ever existed, nothing would be different. They are completely interchangeable, and the way medicine works and how political health care is guarantee that it would have happened this way regardless of who got involved.

There is a place for more in-depth analysis of this giant problem, but there is plenty of place for a shorter introduction to it. I have no idea what exactly will change minds, even economic analyses showing the current approach is the most expensive imaginable doesn't sway anyone, so it's never a bad thing to get this message across in different ways.

The forum has too much of a habit of chewing off the heads of people who get it right enough but not in the perfect way we want it to be. This is not a good strategy on an issue that is immensely political and emotional. People aren't swayed by facts, even physicians, they're swayed by culture and social pressure more than anything else, by stories and narratives.

That is unless there is actual science to overrule all of it, but we're far from there yet.

 

[rvallee]

They actually have contradictory views. When patient self-report supports their interpretation it should be accepted without question, even if any objective evidence says the opposite. When it doesn't [support their interpretation] it should be ignored, or used as evidence that patient self-report is unreliable and evidence of perceptual pathology.

And not even in a subtle way, it's the most extreme level of bias in all the professions, completely off the charts. Even in politics this used to ultimately backfire. Not anymore, but it used to.

 

[rvallee]

I understand you were forced to use the terminology of enduring symptoms by the commission of the article, which is a pity but I don't think is too much of a problem in the case of ME/CFS as you made it clear when the cases you referred to had ME/CFS. The blame for the terminology lies with others.

I agree, enduring has a strong linguistic appeal to me. When I read the part about 'managing' symptoms, my mind immediately (as it often does) went to how it's rather that we are enduring them. There is very little we do that actually counts as managing anything, we just suffer, indefinitely. We endure the misery and the symptoms.

I wouldn't use it officially as a term, mainly because there is simply no useful term that won't be corrupted by psychosomatic ideologues, but it's much closer to reality than any of the usual dog whistles or mislead terms they like to use.

 

[rvallee]

I am afraid that major alarm bells ring in my head. I can see no reason why discussions about ill people should be confidential

That's really funny. From our perspective as patients, literally all discussions about us happen in secret behind closed doors, they are always confidential and we never know anything about what's going on. Mostly because either nothing is going on, or what goes on is very bad for us and is meant to.

Even all the proceedings that weren't completely disastrous, like the NICE guideline, were fully confidential. Health care and medicine is extremely secretive and hostile to having anything it does be seen in public by anyone who isn't in the bubble.

We are not in the bubble. We are extremely far outside the bubble, in a deep hole dug for us by secret decisions made in secret bubbles where everyone is bound to confidentiality.

 

[rvallee]

Here's the link to the editorial for the special issue on 'Challenging myths: debunking functional disorders' by Theresa Barnes.

There's not much debunking going on in the editorial. It's all very much BPS business as usual, with the biological given a bit of acknowledgement, but only as part of a mix. 'Holistic' gets a substantial run, and multi-disciplinary teams is there too. There's some mixed messages and then some very clear ones about keeping costs down.

Now that is an absolutely awful text that actually espouses the flavor-aid. It 'debunks' exactly as much as a jester doing a fake roast of the king that is actually completely sycophantic to the point of being cringe-worthy.

I guess what they mean is 'debunking' the view of patients. As is tradition.