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

[Utsikt]

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.

It does become a problem when someone that is considered to be an advocate of pwME/CFS uses the same language as the BPS ideologues, and even contrasts what’s clearly ME/CFS with «disease» as a concept, not just «other diseases» - so essentially saying that ME/CFS is not a disease.

I understand that the language was forced upon Cheston, but there is always the possibility to say no and publish elsewhere.

By agreeing to use this BPS dogwhistle phrase, Cheston legitimises it, and by extension of that, what the BPS ideology does.

It’s an unintentional mistake, but a mistake no less. The reaction (at least mine) is stronger because this is a serious breach of trust. And it worries me that it comes from someone that thinks that language is important - that it matters how we describe things.

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.

If you believe that, how can it be «right enough» to contribute to the narrative that ME/CFS is not a disease, but just a case of «enduring symptoms»?

The descriptions of what the patients experience are good, but all of that goes to waste when it’s put inside the narrative that we’re so desperately trying to get out of.

I see few differences between this and a BPS researcher interpreting their data in the completely wrong way, something both you and I strongly criticise here almost daily.

 

[MEMarge]

I have now read the article and think you have done an excellent job, within the constraints you were under.

Thank you again for spending your time being involved with this process.

 

[Nightsong]

It's unfortunately not at all uncommon that authors are asked to make unwarranted changes to wording that they would not otherwise have made. (Academic publishing can be a minefield - the actions of reviewers can be far more egregious, such as making demands to cite their own papers or requesting changes that exceed any plausible scope for revision.)

I do see the insistence that "enduring symptoms" be used as entirely emblematic of the problem that we face. We do not have just a motley collection of symptoms; we have a discrete and distinct syndrome, albeit one that can only be diagnosed based on clinical features and not, as of yet, a biomarker. The concept of "enduring symptoms" to me feels like a form of erasure; another attempt to disappear ME/CFS into the inchoate gloop of MUS. There is no serious evidence that ME/CFS is related to any other condition.

On a more tangential note, "MUS" appears to be falling out of favour. A few months ago the psychobehaviouralists' house-organ, the Journal of Psychosomatic Research, published a paper by two of their editorial board recommending a switch from "MUS" to "PPS". Now one of the RCP's two flagship journals is using "enduring symptoms" and "symptom-based disorders" in an apparently unending quest to find a form of wording that is sufficiently palatable to patients.

In no other area of medicine are there so many endlessly-shifting euphemisms.

 

[Jonathan Edwards]

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

My impression is that the idea is to debunk the misguided ideas of doctors who think that 'functional' and 'MUS are not very good terms because nobody knows what they mean - people like Bob Souhami who point out that they just mean ignorance.

I think it runs along the lines of debunking that terrible Cartesian interactionist mind-body dualism when really the problem is mind-body interaction. The piece about nomenclature says it all really - it is a terrible mistake to think that 'functional' or 'MUS' means this that and the other - the reality is that it means the other, that and this - as is plain to see if you follow doublespeak.

I understand that Katherine feels beleaguered but apart from hers this collection of papers is terrible.

 

[Hutan]

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.

I think you have missed the context Rvallee. If Katherine's article was just an article on its own, it would be okayish, although the framing of ME/CFS as 'enduring symptoms' is a bit problematic. If you read through the thread, you will see that I started thinking that the article was good.

But the article is part of a special edition by the Royal College of Physicians that really is an extension of the campaign they started at the time of NICE to promote rehabilitative care. The article's presence helps give an impression that patients are onboard with a range of BPS inspired proposals.

The article talks about an absence of care, but not about a provision of care that is inappropriate. It talks about distressing interactions with health care professionals but not about being given completely inappropriate advice that makes us physically worse. It therefore does nothing to stop ongoing and newly funded BPS services with sympathetic health professionals and rules about minimising diagnostic testing.

Yes, it illustrates how bad ME/CFS can be, but it still helps to serve us up to those who think that we just need a prescription for a bit of exercise and thinking right. It helps those people with their CBT and pacing up feel great about what they are doing, because without their help the poor people with ME/CFS are clearly suffering very badly.

We have to be really careful about how we engage with institutions with a track record of BPS thinking. I have no doubt that some people who planned that special edition hoped that the ME/CFS community would have exactly the sort of conversations we are having now. The sort where many of us who are deeply concerned about where this is headed are painted, even by our own advocates, as too critical, too perfectionist, too nasty, too unwilling to find a compromise.

 

[rvallee]

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:

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.

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".

In a way this is reflective of the state of things, a majority of texts showing the traditional disastrous model and the absolutely bizarre beliefs they hold, contrasted by a short patient perspective that can be read one way, but will be read the other. The real imbalance in even more pronounced, but it's a reflection of reality that all the nonsense above is the completely dominant ideology and that this is what they actually believe. Somehow.

 

[rvallee]

If you believe that, how can it be «right enough» to contribute to the narrative that ME/CFS is not a disease, but just a case of «enduring symptoms»?

The descriptions of what the patients experience are good, but all of that goes to waste when it’s put inside the narrative that we’re so desperately trying to get out of.

I see few differences between this and a BPS researcher interpreting their data in the completely wrong way, something both you and I strongly criticise here almost daily.

A disease is mostly disabling because of symptoms. People can have a disease without knowing it if it barely affects their lives. It's not disease that impairs people most of the time, it's illness and symptoms.

Just because medicine doesn't understand that doesn't change what it is, but what medicine does is not treat illnesses and symptoms but diseases. And it has definitions of what a disease is and it 100% goes through pathology. We don't know the pathology of ME/CFS, and this is why they don't believe it's a disease.

We can't pretend otherwise. We know this is obviously a disease, but they don't and they make 100% of the decisions and this means we have to work with their language, even if it's imperfect.

It doesn't matter that we are right. Being right almost never matters in real life. What matters is who has power and we have none. It doesn't change that getting the perspective of patients more accurately than they do is useful. Not in the short term. Not even in the medium term. But that's because until we know the pathology, absolutely nothing matters outside of the traditional myths and beliefs that are reflected in psychosomatic ideology.

 

[Trish]

I have read back over this thread. It seems we have two contrasting perspectives among those taking part.

We mostly agree that the main content of the article describing serious issues faced by pwME that are not being provided for by medical care is fine, with the article making it clear that those individuals have ME/CFS and the serious problem with the lack of medical care.

The problem comes with the use of the term enduring symptoms as an umbrella category to replace MUS and PPS. And the assumption that ME/CFS fits into that category.

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.

It is sadly true that in much of the social sciences, psychology, and probably neurology literature about ME/CFS is lumped into the MUS, PPS, functional syndromes bucket. And it's sadly true that organisations like the RCP follow their lead and refuse even to accept the NICE Guideline.

But the biomedical literature about ME/CFS never as far as I know throws ME/CFS into that bucket. Some BPS papers about MUS also specify they are not including defined syndromes like ME/CFS and FM in that bucket.

So the RCP invited Katharine to write about her research with patients to give a patient perspective and may or may not have alerted her to the fact that the rest of the articles would be awful BPS.

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.

It's good that we make readers of this thread aware that there are different perspectives on this difficult issue. It's also good that @kacheston has been prepared to listen and learn from our reactions and for us to her her perspective. I want us to keep researchers like Katharine who understand our serious problems with clinical care engaging with us.

 

[kacheston]

It does become a problem when someone that is considered to be an advocate of pwME/CFS uses the same language as the BPS ideologues, and even contrasts what’s clearly ME/CFS with «disease» as a concept, not just «other diseases» - so essentially saying that ME/CFS is not a disease.

I understand that the language was forced upon Cheston, but there is always the possibility to say no and publish elsewhere.

By agreeing to use this BPS dogwhistle phrase, Cheston legitimises it, and by extension of that, what the BPS ideology does.

It’s an unintentional mistake, but a mistake no less. The reaction (at least mine) is stronger because this is a serious breach of trust. And it worries me that it comes from someone that thinks that language is important - that it matters how we describe things.

If you believe that, how can it be «right enough» to contribute to the narrative that ME/CFS is not a disease, but just a case of «enduring symptoms»?

The descriptions of what the patients experience are good, but all of that goes to waste when it’s put inside the narrative that we’re so desperately trying to get out of.

I see few differences between this and a BPS researcher interpreting their data in the completely wrong way, something both you and I strongly criticise here almost daily.

In response to this post in particular, might I ask a question? How do you expect to critique this narrative, if you don’t use this language? How do you have even an iota of a chance of changing hearts and minds if you refuse to engage with people, using the terms with which they (rightly or wrongly) understand the situation?

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.

This point seems obvious to us, of course. But, through this RCP work and other clinical engagement I’ve done, it’s not to other audiences. I’m sure you all know this: that these ‘enduring symptoms’ (or whatever they’re called), in some minds, equate to ‘not that bad’, or certainly ‘not as bad as things that we consider to be diseases’. E.g., when this paper went through peer review, one of the comments I received asked me why one of my interviewees had taken 18 months to complete the interview. Did she have other commitments, etc, or did she forget? It did not seem to occur to this anonymous reviewer that this person completed her interview over 18 months because she was so severely unwell – because an illness that some consider to be a ‘symptom-based disorder’ (etc) could make her this unwell.

I stand by making this point. I believe it was valuable, and I also believe that many of those I discussed this with (in this RCP work as well as others) engaged with this point, and with the data I presented, with genuine shock and concern. This isn't the whole sum of my work on this topic, nor of my views: it's simply what I felt would be most effective in this context. I feel that this was effective, as per feedback I have received.

I also want to state the obvious, that one 1200-word short reflective paper cannot take down the entirety of the BPS ideology since the 1980s. There simply was not space in this paper to critique the BPS model – but, more than space, there wasn’t scope to do this: this was a ‘patient perspective’, i.e., a short reflection. It was not a research article. I was reflecting on the ‘unmet need’, through my research findings. I was not presenting – and I could not present – my own view on the model or on the terminology, other than briefly in the conclusion.

I also believed when I wrote it, just as I believe now, that any attempt at summarising or eluding to these critiques would have done my argument (the point I outlined above) more harm than good. I believe it would have reduced the potency of this point, as well as reduced the likelihood of certain readers engaging with it. However, if you have any ideas as to how I could have phrased this, I genuinely would love to hear, and would be more than happy to use any feedback if I ever write something like this again. (Keep in mind, though, that I was right at the word count, and had maxxed out the amount of references I was allowed, so it would require reducing the body of the article in order to add text.)

I also would like to add that I have critiqued this narrative and these terms explicitly and at length: I’ve literally written an entire book on it.

 

[Trish]

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.

This arose earlier in the thread.
Katharine says in her article that she studies

chronic, often debilitating symptoms and syndromes for which medical evidence of disease cannot yet be found

and that, they are described in some literature as MUS. She does not say she thinks they should be so described.

On the question of whether ME/CFS is classed as a disease or syndrome. I asked google the difference between disease and syndrome, and it said:

A disease has a known cause (like a virus or genetic mutation) and specific pathology, while a syndrome is a collection of signs/symptoms that consistently appear together, but whose underlying cause might be unknown or varied (e.g., Irritable Bowel Syndrome). Think of a disease as having a "why" (etiology), whereas a syndrome is defined by "what" (the group of symptoms), often evolving into a defined disease as science advances.

On that basis, it is correct to describe ME/CFS as a syndrome.

 

[Utsikt]

We don't know the pathology of ME/CFS, and this is why they don't believe it's a disease.

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

We can't pretend otherwise. We know this is obviously a disease, but they don't and they make 100% of the decisions and this means we have to work with their language, even if it's imperfect.

I disagree that we have to work in their language. That’s akin to saying that everyone have to argue against newspeak using neespeak.

We have to use the language of science and proper medicine. And insist that the others do the same.

 

[Jonathan Edwards]

How do you expect to critique this narrative, if you don’t use this language?

I think everyone contributing appreciates just how difficult a position you are in @kacheston. And reading your reply to Miller et al. in the BMJ makes it clear where you stand. Maybe the main concern is that you have been used by precisely the people who are causing the injustice you write about. Ticking the patient engagement box is now like providing date of birth and email address. In reality I guess no harm is done, but I don't think it will impact on those who read the volume. Patients saying how awful it is to have ME/CFS is standard fare for people like Burton.

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.

I appreciate your continued engagement. It can't be easy.

 

[Trish]

Ticking the patient engagement box is now like providing date of birth and email address.

But Katharine was involved as a researcher who researches patient's experiences, not as 'patient engagement'.

 

[Jonathan Edwards]

But Katharine was involved as a researcher who researches patient's experiences, not as 'patient engagement'.

But others present her as the patient voice and even if it is a bit blurred she will fill that space. I have recently discovered that patient involvement is now a requirement on pretty much all grants so to get money to set up this discussion group would have probably needed a patient tick, even if a researcher patient.

 

[Utsikt]

In response to this post in particular, might I ask a question? How do you expect to critique this narrative, if you don’t use this language? How do you have even an iota of a chance of changing hearts and minds if you refuse to engage with people, using the terms with which they (rightly or wrongly) understand the situation?

You could start off by explaining what concept you’re describing, and then explain how it’s wrong to classify it as X or Y. Like Edwards did in the recent factsheet.

The intro in this paper:

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.

This could have been (using syndrome):

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.

Then continue as you did with explaining how bad ME/CFS can get, which was done well.

The doctors that have let pwME/CFS die of malnutrition saw how bad ME/CFS can get. Yet they didn’t change their mind about what it was. So I have no faith in just showing people how it can be, you have to change their beliefs about what it is that they are seeing. (Edited for clarity)

From personal experience: I was barely able to sleep an hour a night and my GP asked if I’ve just given up because all I did was to lie in bed. He saw how bad it was. It didn’t change what he thought he was seeing. Other HCPs have said I should expect to get better because ME/CFS isn’t a «chronic disease» - clearly implying that whatever it is, it’s something else. It’s not just ‘not medically understood’, it’s not medical.

That’s what the dogwhistle «enduring symptoms» means. It’s a charade - and they are using you and your sources as an alibi.

 

[Utsikt]

This arose earlier in the thread.
Katharine says in her article that she studies
and that, they are described in some literature as MUS. She does not say she thinks they should be so described.

«enduring symptoms» is pretty much the same as MUS. It’s just another rebrand in an attempt to find the most acceptable label.

On the question of whether ME/CFS is classed as a disease or syndrome. I asked google and it said:


On that basis, it is correct to describe ME/CFS as a syndrome.

Yes, I can see that JE used syndrome in the factsheet as well.

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

I still think this is not right. There is plenty of «evidence of disease» in the form of symptom patterns, genetic links, severe disability, etc. It’s the known pathology that we’re missing.

I think this phrasing strays into the psychosomatic territory of «there is no reason to think there is anything physically wrong».