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".

It's good to hear that there was a degree of intervention that would have prompted you to not take part in this special edition.

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'.

It's good to hear that there was a degree of intervention that would have prompted you to not take part in this special edition.

I find this particular comment unnecessarily rude and hurtful, and it makes me not want to engage further.

 

[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 further abused by the same people and systems that have already inflicted them with unimaginable suffering. 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.

 

[kacheston]

But you are allowing this extremely vulnerable patient to be further abused by the same people and systems that have already inflicted them with unimaginable suffering. To be used as a pawn to further distance ME/CFS from being a disease - and therefore not treated as one.

Goodness, these are strong - and, for that matter, hurtful - claims to make about a stranger on the internet!

I'm very happy to engage on this forum - it goes without saying that there are some brilliant people here, and I've got so much from our previous discussions. But I'm going to bow out of this thread, now, as it seems as though the discussion has strayed from the published article - and general discussion re: RCP, BPS model - into aspersions against my character/motivations.

 

[Utsikt]

But I'm going to bow out of this thread, now, as it seems as though the discussion has strayed from the published article - and general discussion re: RCP, BPS model - into aspersions against my character/motivations.

That is not at all what I said.

I said that your actions have unfortunate and unintended consequences (so good motivation with a bad outcome), and I specifically said that your name and credibility (i.e. character) should not be associated with this journal, implying that it will taint your good name.

I understand that my criticism is hurtful. And I understand that you react defensively. But please, please take the time to consider my arguments and re-read it when some time has passed.

 

[kacheston]

That is not at all what I said.

I said that your actions have unfortunate and unintended consequences (so good motivation with a bad outcome), and I specifically said that your name and credibility (i.e. character) should not be associated with this journal, implying that it will taint your good name.

I understand that my criticism is hurtful. And I understand that you react defensively. But please, please take the time to consider my arguments and re-read it when some times has passed.

You told me that I am 'allowing this extremely vulnerable patient to be further abused by the same people and systems that have already inflicted them with unimaginable suffering'. You stated that as if it were a fact; you wrote a declarative (and, arguably, defamatory) statement. That is why I quoted those two sentences in my message, because it is in these two sentences that you make these claims. I'm not referring to the rest of your message.