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 it should be ignored, or used as evidence that patient self-report is unreliable and evidence of perceptual pathology.
 
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
 
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