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

Nightsong

Nightsong

Senior Member (Voting Rights)
Abstract:
This short paper illustrates the lived experience of individuals with severe enduring symptoms: chronic, often debilitating conditions for which no clear medical explanation currently exists. Drawing on qualitative interviews, the paper highlights the profound suffering, isolation, and lack of medical support experienced by this underserved population. It examines the systemic barriers to care, including stigma, the absence of follow-up services, and the traumatising nature of some healthcare encounters, which can lead to healthcare avoidance even in the face of potentially life-threatening symptoms. It concludes with a call for improved training for clinicians, increased capacity within NHS services, and ring-fenced funding for biomedical research.

Link (Future Healthcare Journal, December 2025, open access, author is @kacheston)
 
When I began my research, I was well aware that enduring symptoms can (as the authors of one review paper recently stated) ‘cause far greater disability than diseases where signs are prominent’.1
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What are «enduring symptoms» and how do they differ from «diseases where signs are prominent»?

Is ME/CFS not a disease?
 
Not sure if @Utsikt was just asking rhetorically, but why miss out on the opportunity to ramble...

Medicine distinguishes between 'signs' and 'symptoms'
Signs are objective indicators of illness (measurable/observable by others, like fever or rash), while symptoms are subjective (felt by the patient, like pain or nausea).
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A lot of psychologization of illness could arguably be put down to this implicit weighing of *signs* as being way above *symptoms*. Medicine ends up assuming patients are a less reliable source of information about the health of their own body than what the doctor sees in a few minutes of examination.

Skimming this article it seems like they are sort of trying to push past that thinking, but as Jonathan said, still kind of playing lip service to it, probably because it's what they are used to and how their intended audience views things.
 
ScoutB said:
Not sure if @Utsikt was just asking rhetorically, but why miss out on the opportunity to ramble...

Medicine distinguishes between 'signs' and 'symptoms'

A lot of psychologization of illness could arguably be put down to this implicit weighing of *signs* as being way above *symptoms*. Medicine ends up assuming patients are a less reliable source of information about the health of their own body than what the doctor sees in a few minutes of examination.

Skimming this article it seems like they are sort of trying to push past that thinking, but as Jonathan said, still kind of playing lip service to it, probably because it's what they are used to and how their intended audience views things.
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Thanks for explaining. It was in part rhetorical, but the article lacks a definition.

Seems like a completely artificial separation. Lots of what we now call signs used to be symptoms, and many more will follow. And I assume a good doctor has to rely on both!
 
I thought it was a generally good article, although short. Perhaps it will be useful for advocacy. I think Katherine has an association with AfME.

I think this bit quoted below was a bit troublesome though, it's the part where the terms used by the proponents of psychosomatic theories are described as being typically used in the clinical literature.

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.
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It's a shame to increase the credibility of that terminology.

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.
 
ScoutB said:
Medicine ends up assuming patients are a less reliable source of information about the health of their own body than what the doctor sees in a few minutes of examination.
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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.
 
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Hello,

I’m the author of this article and spotted I had a notification for this thread.

Perhaps as a bit of useful context, this was an invited article, as part of a special issue. This journal (apparently) always has at least one ‘patient perspective’ article per issue, which is what this is (and that's why it’s far shorter than a typical research article).

The special issue grew out of a scoping project the RCP were doing on ‘enduring symptoms’ - hence where this language comes from, although it seems that in the intervening four months between this article being accepted for publication and the release of the issue, the term ‘symptom-based disorders’ is now being used.

I was invited to be part of this scoping project, which involved attending fortnightly meetings and sharing with others in attendance (all of whom were clinicians) the findings of my qualitative research: how severe these conditions are, their impacts, the scale of the suffering and the scale of the neglect.

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. 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.

There’s a lot that I could say about this RCP work – but, as I’m sure you’ll appreciate, I can’t do this on a public forum. Happy to talk about the paper, though!

@Sean @Hutan @Jonathan Edwards @Utsikt @ScoutB @Nightsong
 
Thanks for that context @kacheston. It sounds as though the process of creating the article has been valuable advocacy work in itself. The journal is affiliated with the Royal College of Physicians; I do wonder what the clinicians you came across made of your information.


kacheston said:
The special issue grew out of a scoping project the RCP were doing on ‘enduring symptoms’
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I see the special issue of the journal is
Commercial Determinants and Conflicts of Interest in Public Health and Policy

There are some papers on junk food, alcohol, tobacco, infant formula.... as well as the need for a mandatory register of interests for UK clinicians. While I can certainly see an interesting intersection between ME/CFS and 'commercial determinants and conflicts of interest in public health and policy', I don't think your paper Katherine really explores those? The inclusion of the paper in the commercial determinants special issue seems a bit odd.

There are no other papers on enduring symptoms in that special issue. Is there anything more to come from the RCP from that scoping project on 'enduring symptoms'? Did they perhaps give up on the topic?


kacheston said:
it seems that in the intervening four months between this article being accepted for publication and the release of the issue, the term ‘symptom-based disorders’ is now being used.
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Ha, perhaps someone realised that 'enduring symptoms' was a miss-step. It sounds rather too permanent when you are trying to convince someone that all they need to do to be well is to think more positively. Whereas 'symptom-based disorders' fits very nicely with the idea of 'nothing to see here, move along', 'it's only in your head'.
 
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Thank you @kacheston. I think it's an excellent article.

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 actually think enduring symptoms sounds better than MUS or PPS. It includes the ambiguity of two meanings of enduring - long lasting and needing to be endured. I wonder whether that is intentional.
Definition verb to endure:
1. suffer (something painful or difficult) patiently.
2. remain in existence; last.

I think this article will be useful when arguing for better consultant led services for pwME that cater for all severities.

Were the case studies you included interviewed for this specific article or are they part of a wider collection you have perhaps given a more detailed analysis to in another paper?
 
Thanks @Hutan - and yes, I do hope so. I certainly felt as though I was able to make some valuable contributions, that wouldn't have been brought to the table otherwise.

That's odd - when I click through to this issue (Vol 12, Issue 4), I can see other papers associated with this scoping project. These are a series of papers brought under the title, 'Challenging myths: debunking functional disorders'.

These are articles numbers 100490 (editorial), 100465 (mine), 100480 (a good one on fibromyalgia), 100484, 100489, 100469, 100482. Then the rest of the articles aren't associated with this theme, which seems an odd way of structuring a special issue, but perhaps it's typical of FHJ - it's not a journal I read often so I'm not sure.
 
kacheston said:
There’s a lot that I could say about this RCP work – but, as I’m sure you’ll appreciate, I can’t do this on a public forum. Happy to talk about the paper, though!
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Why can't you talk about it on a public forum @kacheston? If it is about people with ME/CFS they are entitled to know all about it surely (nothing about us without us). I would not want to get involved in something about ill people that could not be discussed publicly.

The RCP have been very unhelpful so far. As a Fellow I have absolutely no idea what goes on there in relation to ME/CFS. A previous president told me off for supporting the NICE guideline and the ME/CFS expert seems to be someone with unhelpful views. The ME/CFS community desperately needs insight into what is going on at RCP but nobody seems to be prepared to say!
 
Trish said:
Thank you @kacheston. I think it's an excellent article.

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 actually think enduring symptoms sounds better than MUS or PPS. It includes the ambiguity of two meanings of enduring - long lasting and needing to be endured. I wonder whether that is intentional.
Definition verb to endure:
1. suffer (something painful or difficult) patiently.
2. remain in existence; last.

I think this article will be useful when arguing for better consultant led services for pwME that cater for all severities.

Were the case studies you included interviewed for this specific article or are they part of a wider collection you have perhaps given a more detailed analysis to in another paper?
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Thank you so much, @Trish.

You make a good point about the terminology - I'm afraid I don't know where it came from, but I too was intrigued (especially as I'd not seen this term used elsewhere).

The interviews were those I conducted as part of my PhD. Two of these interviews are discussed in more detail in other papers (published in 2022 and 2025, although written long before this). The full collection of ten extended interviews are analysed in much more detail in my thesis, which I am currently trying to publish as a monograph/book. If I'm successful, because I was funded by Wellcome, this would be available open access.
 
Jonathan Edwards said:
Why can't you talk about it on a public forum @kacheston? If it is about people with ME/CFS they are entitled to know all about it surely (nothing about us without us). I would not want to get involved in something about ill people that could not be discussed publicly.

The RCP have been very unhelpful so far. As a Fellow I have absolutely no idea what goes on there in relation to ME/CFS. A previous president told me off for supporting the NICE guideline and the ME/CFS expert seems to be someone with unhelpful views. The ME/CFS community desperately needs insight into what is going on at RCP but nobody seems to be prepared to say!
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I'm not going to talk about it on a public forum because, to me, that seems completely inappropriate and unprofessional - and unfair. These were a series of meetings with a small group of people. I didn't take minutes, or recordings (obviously), so anything I were to say about the content of thee discussions would be extended hearsay, involving individuals who (by their presence in e.g., this special issue), can be identified. Others may disagree, but to me that's poor form, and not something I'm willing to do.

These weren't meetings about ME/CFS, though, so I also have absolutely no idea what's going on at RCP re: ME/CFS.
 
Jonathan Edwards said:
The link we have only gives your article and some unrelated ones for the special edition @kacheston.
Something odd seems to be going on. I am unclear what 'debunking functional disorders is supposed to imply? Is there a way to access the editorial? Is there a PubMed entry maybe?
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That is odd! From the link included in the OP, I then clicked on 'Volume 12, Issue 4' (below 'Future Healthcare Journal', at the top) and on that page I can see the list with the article numbers I included above
 
I find it hard to follow. If they were not about ME/CFS were they about 'functional disorders' or 'enduring symptoms', which seem to be ME/CFS?

I am afraid that major alarm bells ring in my head. I can see no reason why discussions about ill people should be confidential, certainly if they are sponsored by an organisation like RCP. There has been far too much going on behind the scenes in this are and it looks as if as a result we will be left with a disastrous plan for ME/CFS and no meaningful care. The RCP are primarily responsible for the injustice you describe in your article. Was that made clear at these meetings?
 
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