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

[kacheston]

Seeing the context better your dilemma is easier to understand but I think that, yes, you can critique the narrative either by using other terms or pointing out how unhelpful the terms are - quoting Wessely on saying how useful it is that they mean something different to doctor and patient for instance. I can see that might have raised complaints and you are junior so it's hard.

I think it is important, though, to realise that MUS and functional and PPS are not like terms like diabetes and psoriasis. Words like diabetes are used by diabetologists and by every other doctor. MUS and PPS are only used by a rather small group of doctors who have chosen to be in this field and they use them as political instruments. In my old rheumatology department nobody ever used these terms amongst themselves, but they may have used them to talk to patients, or to present at MUS meetings, where the performance was part of the game. A lot of other doctors may have misconceptions about ME/CFS but they wouldn't ever feel the need to refer to it as MUS or enduring symtpoms. This is a language designed for a medico-political bubble.

Your points about narrative and language are also really interesting - thank you, @Jonathan Edwards, this has been food for thought!

In general, I'm very comfortable criticising this narrative. I wrote a whole PhD on it! It was more that I felt unable to allude to these criticisms in this short reflective piece. More precisely, I felt that - had I done this - it would have detracted from the point I wanted to get across.

I could e.g., have done as @Utsikt suggests, and write something along these lines:

Since 2019, my research has focused on ME/CFS. It’s a chronic and often debilitating syndrome where the exact pathology is not yet understood. ME/CFS is sometimes wrongfully and unhelpfully described as ‘medically unexplained’, ‘functional’, ‘persistent symptoms’, etc., often in attempts to psychologise the syndrome or convey knowledge about causes that we do not have.

But I strongly believe that including something like this would have detracted from the point I was trying to make (about how ill people are) - because these claims require evidence. Of course, we all know that describing ME/CFS as MUS etc is wrong, and it is unhelpful - not to mention that it causes significant harm, both physical via GET/deterioration and emotional via blaming, stigmatisation - but, in order to make these claims, this would have required more significant unpacking than I was able to, or within scope to, do here.

If I had included something like this, surely I would have opened myself up to the risk that readers would have thought less of my critical acumen (for want of a better word!) and therefore that they wouldn't have taken on board the simple point I was actually making? (I.e., because I'm making claims which, to us, are self-evident, but to the readers of this journal, are unevidenced and go against their world-view.) I do strongly feel that making these allusions to psychologisation (etc) - without the evidence, argument and narrative needed to support them and, in so doing, challenge this world-view - would have weakened the argument I was able to make. Perhaps others disagree? And, if so, I'm (again, very genuinely) all ears, so to speak.

I also want to add that it's not that I'm hesitant to make these claims: I've done this unpacking elsewhere, in my PhD and in other papers (including those currently in preparation). Ironically, I was supposed to spend today working on a paper doing precisely this - but in the end I've spent a lot of the day here!

 

[Utsikt]

For example, before Parkinson's or MS pathomechanisms were known, I think they would have fit in an 'enduring symptoms' category. At least in my view. But the term itself kind of gives me 'psychological' vibes, where if someone wants to read into this as 'psychological symptoms', it'd be easier for them to do.

Both of those have clear pathological signs during autopsies. Wikipedia says MS was described as a separate disease entity in 1868. Parkinson was named in 1877.

 

[Lou B Lou]

Thank you so much @kacheston for engaging.


On the 'enduring symptoms' terminology - it feels odd to me since it's a new term I haven't seen, but if you were required to use it, I guess you had to. I can see how maybe it could be interpreted by people who want to interpret it this way as "those patients who just need therapy and maybe exercise", when in reality, we're just talking about disease processes that science hasn't figured out yet.

For example, before Parkinson's or MS pathomechanisms were known, I think they would have fit in an 'enduring symptoms' category. At least in my view. But the term itself kind of gives me 'psychological' vibes, where if someone wants to read into this as 'psychological symptoms', it'd be easier for them to do.

I can see how in the context of this being part of a special issue, it's basically describing the scope of the problem, with the other papers giving solutions, so it might be important to consider whether you'd agree with those solutions. (I haven't read those other papers, just going by this thread.) As a stand-alone paper, I think it's good to have some more descriptions of how awful these syndromes can be, though I'm not sure if people are going to be searching for "enduring symptoms" to see these descriptions.

I hope members keep in mind how valuable it is to have researchers working right in the middle of all of it feeling comfortable enough to come speak with us. kacheston was very gracious in taking our feedback for the recent big survey, and I hope such productive conversations can continue to happen.

' ‘enduring symptoms’. These are chronic, often debilitating symptoms and syndromes for which medical evidence of disease cannot yet be found'



'Enduring symptoms' - just the latest synonym for 'psychosomatic', after MUS, MUPS, PUPS etc etc .... all terms that can be naively rationalised as merely descriptive, but which are central to the ongoing language/acronym trickery of the BPS lobby.

Lets remember that the BPS lobby does not excel in medicine or science, but primarily 'Does' Narrative, Rhetoric, and deviously messes with Language.

.

Edit add .... when George Monbiot wrote that few newspaper journalists were science graduates (he is a science graduate) but are Humanities graduates, and so are not necessarily in a good position to analyse and critique PACE etc ....

My first thought was - but if those journalists are mostly humanities graduates, how come none of them identified that the press releases they had been fed about ME for decades were 99% Narratives, enticing seductive stories .... that they were being fed little more than persuasive fiction stories, which the journalists then embellished and embedded in the minds of the newspaper reading public. Hmmm?

 

[kacheston]

I'm curious did that reviewer read the current phrasing of where you mention the interviewee needing a period of 18mths to respond and overlook your explanation or did you have to rephrase?


Good to hear. Shock and concern are the appropriate responses & mean your message was heard loud and clear. At least by those at the meetings, however those, who read the journal article later in the context of the other articles, interpret it all. I'm glad that you were present and able to speak at those meetings & communicate these important points. I think those are the sort of meetings that can slowly change a culture & it was important to take up that opportunity.

Thank you, @StellariaGraminea - and for your earlier post, too!

In response to your question, I made this part of the paper more explicit in its published version. I felt it was eminently clear in the original version I submitted, though, hence my surprise!

And thank you! I'm glad I did it, even though it was hard at times and for various reasons. The personal/professional dynamic in these contexts isn't the easiest!

 

[forestglip]

Both of those have clear pathological signs during autopsies. Wikipedia says MS was described as a separate disease entity in 1868. Parkinson was named in 1877.

But before that. People still had the symptoms, but no one knew to look at a specific thing in the brain. It'd just be 'enduring symptoms', and then one day, they see the neuron damage, and it becomes a disease with a specific mechanism.

My point is that all the uncharacterized 'enduring symptoms' today, are just modern day versions of this that science hasn't figured out yet. One day, we'll hopefully be able to describe them the same way.

 

[kacheston]

You are probably right in a direct sense, although the usage is pervasive - AfME have been used, MEA have been used... It may not be deliberate in immediate practical terms but it serves a common purpose.

And it is well to remember that your circumspection is well grounded. We have seen at least two junior academics have their employers advised to terminate funding by telephone calls or emails from members of the old BPS brigade, quite likely the head honcho himself. Sometimes the deliberateness is very clear. We won't forget the cryptic email 'There is a way..." to Gillian Leng.

So yes, I think we can see what has happened here and it is a sorry mess but you are not to be put in an impossible position.

Honestly, I'm a bit disappointed that I've never (and my employers have never) had one of these emails - I'd take it as a sign I'd done something right!

I'm not looking for a career in academia, though, so all of this doesn't affect me in the same way it would others. I'll continue for as long as I can get funding for research I think is valuable, and after that (could be as soon as next year, if my fellowship applications are unsuccessful) I'll leave and work in a different sector entirely.

 

[Utsikt]

But before that. People still had the symptoms, but no one knew to look at a specific thing in the brain. It'd just be 'enduring symptoms', and then one day, they see the neuron damage, and it becomes a disease with a specific mechanism.

My point is that all the uncharacterized 'enduring symptoms' today, are just modern day versions of this that science hasn't figured out yet. One day, we'll hopefully be able to describe them the same way.

I agree that the things that people that use that language places in the category of «enduring symptoms» will one day be explained.

I just don’t think that justifies using the label.

It also alludes to something enduring despite the lack of pathological signs. And we all know why they think that is: it’s psychosomatic. The «haven’t figured it out yet» is a straight lie - they already think they know what it is, but have learned that people take offence when they say it out loud.

 

[Peter T]

Thank you @kacheston for participating in this thread, it is much appreciated.

 

[forestglip]

I just don’t think that justifies using the label.

I don't think I was clear. My point was the term, as defined, should technically include basically any disease mechanism that science is still not able to describe. But the term still 'feels' like it's describing some specific group with a hypothesized mechanism that is basically FND, and so maybe shouldn't be used.

 

[Utsikt]

I don't think I was clear. My point was the term, as defined, should technically include basically any disease mechanism that science is still not able to describe. But the term still 'feels' like it's describing some specific group with a hypothesized mechanism that is basically FND, and so maybe shouldn't be used.

Ah, that makes sense. I should have caught that.

 

[Jonathan Edwards]

I'm making claims which, to us, are self-evident, but to the readers of this journal, are unevidenced and go against their world-view.

I don't think they go against their worldview though. They are perfectly happy that having ME/CFS seems absolutely awful to people with it. They will regularly hear this. This is the weird thing. But they think they can help by encouraging people to realise - as you say to Miller - that it is all their own fault for bad thinking. Or at least they are very familiar with this account from patients which they may not believe, but then maybe they are not going to believe your narrative more than the others?

These people are happy to form a deliberate policy to discourage life support for people they know to describe their state as at least as bad as you have described, bad enough to starve to death. There is no need to help because it is 'functional'.

One day things will change. They have to. All we can do at the moment is allow our eyes to open. It has taken me too long to do that but I think I am beginning to see how things really are.

 

[V.R.T.]

We have seen at least two junior academics have their employers advised to terminate funding by telephone calls or emails from members of the old BPS brigade, quite likely the head honcho himself. Sometimes the deliberateness is very clear. We won't forget the cryptic email 'There is a way..." to Gillian Leng.

These people are happy to form a deliberate policy to discourage life support for people they know to describe their state as at least as bad as you have described, bad enough to starve to death. There is no need to help because it is 'functional'.

I think these two quotes very aptly highlight the degree of evil that has been committed by the BPS clinicians.

One day things will change. They have to.

I hope you're right.

 

[Hutan]

Then it's at least fortunate that one of those texts is not the same awful myths and tropes.

We can't make people change their minds here, but what is going on can be documented in a way that, some day, it can be pointed at to say: "you knew, you were all made aware of all of this, and you chose to ignore it anyway".

The problem is, Katharine's article is not fundamentally misaligned with those other articles. The aim of the paper seems to have been to convince readers that people with 'enduring symptoms' can be very ill indeed, very disabled and living very restricted lives, that there is an absence of care, and patients become distressed when they are stigmatised in encounters with the health system.

All of that is consistent with the BPS world-view. Yes, some doctors think 'enduring symptoms' and everything that falls into that bucket doesn't mean 'seriously ill'. But, there are plenty of examples where BPS proponents accept that people can be very restricted in the way they live. As Utsikt said, BPS proponents are aware of the people who have died or who been hospitalised. And, we have seen lots of papers where the BPS/FND proponents appear concerned about how to reduce the stigma of getting a functional disorder diagnosis. Plenty of BPS proponents are happy to accept that there needs to be more treatment services.

There was a choice in the paper, to focus on severity, the absence of care and the stigmatisation, as was done, or to also detail the provision of inappropriate care. 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.

In my view, it was crucial, in providing the patient perspective that it was noted that the BPS paradigms and models of care are ineffective and themselves lead to stigmatisation and distress. It doesn't matter how kind the person teaching you CBT to push through your symptoms towards more activity is, if you can't actually recover. You will still be sick, but with others around you and possibly with you yourself believing that if only you had tried harder, you would be well.

We know, from patient testimonies we see every week, that it is the BPS paradigm that contributes enormously to the despair, the stigmatisation, and the abandonment by family and friends. We know that society's acceptance that people with 'enduring symptoms' are less deserving and indeed should not receive the same level of government assistance as a person with a physical disability is based on a model that these people could be well if they thought differently.

Katharine's article did nothing to bring that point to the attention of people considering what answer is needed to address the substantial numbers of people with disabling 'enduring symptoms'.

I can see it's a hard decision to make. Whether to engage and write an article, acceding to the requirement of lumping ME/CFS in with MUS, in order for an important perspective to be heard, or to refuse and leave them to produce and entirely BPS issue of the journal.

Some of us think it was a good decision to go along with it, with the benefit to patients of the serious issues of lack of ME/CFS medical care being stated, and the hope it may help towards at least some doctors providing better medical care.

Others think it was a bad decision to go along with it on the grounds that it's colluding with lumping us into the wrong bucket and thereby causing us further harm.

Providing an article was not a bad decision. Providing an article that defined the problem in a way that allowed the BPS worldview to be the answer was.

The whole point of this paper is to say: these illnesses – which you, i.e., physicians reading this, understand as ‘enduring symptoms’ (or ‘medically unexplained symptoms’, or ‘functional disorders’, or ‘symptom-based disorders’, or whatever) – are really, really bad. People are suffering enormously, on so many levels, and have been largely abandoned by society. This is an awful situation and we need to do something about it.

That paragraph above is the summary of Katharine's article. 'Physicians! - 'enduring symptoms, functional disorders' are a thing, widely discussed in the clinical literature. They are really really bad, there is an absence of care, we need to do something'. The other articles in the special edition have the answers ready to respond to this call for help, as presumably the people who conceived this special edition planned.

I think this situation could have reasonably been foreseen. It is not enough to talk about how ill, how restricted people are. The crucial information is that the BPS paradigm is not helping and in fact is making things worse. And a bit of training in empathy and refining the messages is not enough to fix things.

 

[ScoutB]

It is very very hard to change minds when doing so involves a blow to the ego, or accepting that one has contributed to something horrific. The people who can be swayed by Katharine's piece will be people less engaged in the fight, who don't feel personally attacked by the idea that pwME are being underserved by the medical system.

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

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.

@kacheston thank you for putting the effort into this article and for taking the time to engage with us on here.

 

[kacheston]

I don't think they go against their worldview though. They are perfectly happy that having ME/CFS seems absolutely awful to people with it. They will regularly hear this. This is the weird thing. But they think they can help by encouraging people to realise - as you say to Miller - that it is all their own fault for bad thinking. Or at least they are very familiar with this account from patients which they may not believe, but then maybe they are not going to believe your narrative more than the others?

These people are happy to form a deliberate policy to discourage life support for people they know to describe their state as at least as bad as you have described, bad enough to starve to death. There is no need to help because it is 'functional'.

One day things will change. They have to. All we can do at the moment is allow our eyes to open. It has taken me too long to do that but I think I am beginning to see how things really are.

Sorry, when I wrote 'I'm making claims...' I was referring to the hypothetical claims I could have made (but didn't) re: allusions to psychologisation.

But your point still stands re: how ill these populations are. I think what you say is true for a subset of clinicians, absolutely (perhaps e.g., we could say it is for one person who authored a paper in this special issue, who's worked on "MUS", but who actually didn't attend the scoping meetings...)

But I also do think that there are clinicians who are, genuinely, just unaware of how ill those with 'symptom-based disorders' are, and it's those I was speaking to in my paper. I've seen that in the work I've done with clinicians, as a researcher, but also in my personal life, including both clinician acquaintances as well as the GP in 2013 who told me that she'd never seen someone so unwell with ME. (I was at university, part-time, and I'd walked the 10 minutes to the surgery; I wasn't event most unwell I'd ever been, by a significant margin.)

 

[Trish]

These people are happy to form a deliberate policy to discourage life support for people they know to describe their state as at least as bad as you have described, bad enough to starve to death. There is no need to help because it is 'functional'.

That is truly terrifying.

 

[V.R.T.]

But I also do think that there are clinicians who are, genuinely, just unaware of how ill those with 'symptom-based disorders' are, and it's those I was speaking to in my paper. I've seen that in the work I've done with clinicians, as a researcher, but also in my personal life, including both clinician acquaintances as well as the GP in 2013 who told me that she'd never seen someone so unwell with ME. (I was at university, part-time, and I'd walked the 10 minutes to the surgery; I wasn't event most unwell I'd ever been, by a significant margin.)

This is very true. This same ignorance is what enables many of them to give ME/CFS patients harmful advice and negligent care. They think patients like me who are incredibly unwell are just being dramatic. Because nobody could possibly be this disabled from chronic fatigue, could they?

I understand why you would want to wake up those doctors who can be reached to the reality of how bad things can get.

 

[forestglip]

There was a choice in the paper, to focus on severity, the absence of care and the stigmatisation, as was done, or to also detail the provision of inappropriate care.

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.

What specific kinds of things would you have preferred to be included? Quotes from patients saying "Because of CBT, I am now bedbound"? That might be okay. But it'd be a lot harder for the claim to be made by the author that these people's symptoms have been exacerbated by inappropriate treatments.

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

 

[kacheston]

It is very very hard to change minds when doing so involves a blow to the ego, or accepting that one has contributed to something horrific. The people who can be swayed by Katharine's piece will be people less engaged in the fight, who don't feel personally attacked by the idea that pwME are being underserved by the medical system.

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

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.

@kacheston thank you for putting the effort into this article and for taking the time to engage with us on here.

Thanks, @ScoutB!

I do totally agree with your first paragraph. There's emotional labour involved in counteracting these narratives for sure.

Typically, no, academics will search for an article and read that independently of the others in the issue.

Also, for absolute clarity - I was not funded to do any of this! I received nothing in exchange for my participation, nor for the article; I don't know, but I'm pretty sure none of the participants did, and absolutely certain that no one would have received anything for authoring an article. I actually took part in the majority of the meetings whilst unemployed as my postdoctoral fellowship hadn't started at that point, so I wasn't receiving funding from anywhere...

 

[kacheston]

There was a choice in the paper, to focus on severity, the absence of care and the stigmatisation, as was done, or to also detail the provision of inappropriate care. 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.

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.