Enduring symptoms: A call to immediate action, 2025, Barnes

[Hutan]

Part of the RCP Future Healthcare Journal Special Issue - other papers:

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A patient perspective on enduring symptoms - the unmet need, Cheston (this was the initial thread that discussed the Special Issue; it has some general discussion on the special issue)​

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Future healthcare for patients with the common pain disorder ‘fibromyalgia syndrome’ – fundamental changes based on the discovery of an immune cause, Goebel​

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Breaking barriers in the education of persistent physical symptoms, Rafi and Rafi​

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Diagnostic labels in functional disorders, Novak​

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My fibromyalgia journey, Robinson​

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The FHJ debate: The NHS is failing to provide services for patients with symptom-based disorders, Burton and Ellis​

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Author: Teresa Barnes
Editorial for the Special Issue
Enduring symptoms: A call to immediate action

I would like to thank the Future Healthcare Journal for supporting this themed issue related to symptom-based disorders. Thank you to the staff of the journal for all their help in preparing and producing the articles.

Clinicians in every field will recognise the significant prevalence and importance of conditions which cause persistent symptoms and significant distress to patients in the absence of a simple structural explanation for these symptoms. These conditions have variously been referred to as ‘medically unexplained’, ‘functional’, ‘somatic’, ‘symptom based’ or ‘enduring’.1 They can occur alone as a primary disorder or, as is increasingly recognised, can be associated with other long-term conditions.

These conditions represent dysregulation rather than damage or degeneration, and they cause significant morbidity within the population. They have a significant impact on resource utilisation within health services. They are often poorly managed, leaving patients with significant stigmatisation, unmet needs and alienation from health services that are often not set up in a way to deal adequately with these conditions. Patients are often left feeling that there is little hope of improving their symptoms or regaining function. 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

The cause of these symptoms is highly complex and currently incompletely understood. They involve an interplay of biopsychosocial mechanisms....

Link open access
Future Healthcare Journal - Journal of the UK Royal College of Physicians




See also
In medicine, good things don’t come to those who wait, 2025, Duncombe
The overall editorial for the issue which includes papers unrelated to the Special Issue
(All content relevant to the Special Issue has been copied here)

Welcome to this issue of Future Healthcare Journal, where we highlight common illnesses affecting millions in the UK alone with chronic distressing symptoms, largely without a proven pathophysiological basis. A variety of phrases have been used to describe these, including medically unexplained symptoms, persistent physical symptoms and functional disorders, with symptom-based disorders now being the preferred term. The spectrum includes fibromyalgia, chronic fatigue syndrome/ME, post-COVID and irritable bowel syndrome, and many disorders overlap all medical specialties. Most of us will have some family members or friends suffering from one of these. I am delighted to welcome Theresa Barnes as our guest editor for this themed issue and I commend her editorial, where she signposts and discusses the expert opinion papers that we have commissioned on this crucial topic.

Reading the patient perspectives in the issue and listening to friends’ testimonies, I was struck by how much waiting is a key frustration of these patients’ lives: waiting for a diagnosis, waiting for explanations, waiting for recognition, waiting for support and treatment, and waiting in hope for recovery. Apart from the human cost of the suffering to patients and their families, most of those affected are of working age, so the economic cost of lost productivity is substantial. Given all this, it is perhaps most surprising that there has been so little high-quality research in this area, nor the funding to facilitate this. We hope you gain new insights from reading these articles in this issue.

 

[Utsikt]

The gist of this editorial:

There is a need:

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).2,3https://www.sciencedirect.com/science/article/pii/S2514664525002693#bib0004

These symptoms are (bio)psychosocial:

The cause of these symptoms is highly complex and currently incompletely understood. They involve an interplay of biopsychosocial mechanisms. Recent advances in mechanistic thinking are explored by Andreas Goebel.4 His findings bring fresh therapeutic hope to patients with fibromyalgia, although the cost implications to the NHS of the potential treatment strategies may be high.

We know what the patients need:

Services for symptom-based disorders should be focused on holistic and personalised management of a patient’s symptoms and distress, with the aim of improving function. They should be supported by a multidisciplinary team including peer support, social prescribing, social and employment support, and in-reach from specialist services including psychology to facilitate investigation of red flag symptoms or for escalation of treatment where required.

Please give us more money and power:

We may legitimately ask, can we afford to commission these services? I would argue that we can’t afford not to. These disorders have significant implications for health services and society as a whole. We need to innovate models of care which can be cost effective. We need to move at pace to fully quantify the impact of these, often hidden, conditions so that we can demonstrate the cost utility of providing services to address them. For too long addressing this issue and opening this particular can of worms has been in the ‘too difficult’ box. Now is the time to tackle the issue head on.

This entire special issue seems like a way of arguing that we need more of whatever the (B)PS people are providing. I haven’t seen anything new in the papers I’ve looked at, it’s just very predictable opinion pieces and a couple of accounts from the patients where they are not given to space to tell the readers that everything the others are suggesting as solutions is the cause of many of the patients’s problems.

So while the patient accounts might make someone think twice about dismissing these symptoms as «nothing», in this context, they unfortunately end up creating a sense of urgency that the others can capitalise on.

 

[Trish]

A few years ago after the NICE 2021 ME/CFS guideline was published, I thought there was more of a trend for ME/CFS to be excluded from the MUS/PPS umbrella.

We had our own separate guideline, PEM was recognised as making the rehab approach harmful or at least not cost effective, and there was recognition that there is no effective treatment available, but we still need medical care including symptomatic treatment and regular review by a doctor, and some information about management to reduce PEM and deterioration.

There was also clear recogntion of the need for accessible and appropriate medical care for people with severe and very severe ME/CFS including home care.

This seems to have completely evaporated. It's business as usual as if NICE never happened. A few tweeks to BACME's old appoach to turn one form of BPS into another and they roll merrily on. Still nothing for ongoing care or severe and very severe ME/CFS.

Now we find even that is going, to be subsumed into generic wellness training and social prescribing.

How naive I was to think there was some integrity in the NHS.

 

[bobbler]

A few years ago after the NICE 2021 ME/CFS guideline was published, I thought there was more of a trend for ME/CFS to be excluded from the MUS/PPS umbrella.

We had our own separate guideline, PEM was recognised as making the rehab approach harmful or at least not cost effective, and there was recognition that there is no effective treatment available, but we still need medical care including symptomatic treatment and regular review by a doctor, and some information about management to reduce PEM and deterioration.

There was also clear recogntion of the need for accessible and appropriate medical care for people with severe and very severe ME/CFS including home care.

This seems to have completely evaporated. It's business as usual as if NICE never happened. A few tweeks to BACME's old appoach to turn one form of BPS into another and they roll merrily on. Still nothing for ongoing care or severe and very severe ME/CFS.

Now we find even that is going, to be subsumed into generic wellness training and social prescribing.

How naive I was to think there was some integrity in the NHS.

It always needed the ‘mus approach’ closing down and being dealt with fir that to have been the case.

As long as it was there it was always mainly to cover us, because what they see is as is this big lump of whatever people - it’s never been about actual illnesses just bigotry disguised by terms like ‘functional’ to pretend there’s some reason for their behaviour that’s not just to do with them and could ever be justified rather than what it is. So as long as a version of that fairy tale wasn’t destroyed which it should have been that was always their obvious intention that they were going to let us talk whilst telling everyone to ignore us and carry on doing that after they’d paused to pretend they listened but we’re just waiting for the bystanders to get bored whilst they made us ask 4,000 times so they instead of getting angry with them for bring laggards told their victims to shut up and stop asking for Riggs cos they can’t stand hearing them.

It’s the one time i’ll use the term ‘overlapping conditions’ because as long as the approach exists it’s about pushing that attitude of: ‘fibro, cfs they are both the same thing really’ and the attitude that meant what label people got was down to who they saw as a doctor and what of the terms they preferred to use rather than anyone really thinking they’ll ever be treated as proper medical care one day other than the pat on head there there they all think they’ll ever aren’t the bigots (that’s those calling it yuppie flu) because they offer.

As long as that approach exists that industry which is now huge exists and they incite and push and impose that attitude and worse actually brainwash so hard that’s what people actually see. Remember most in medical school not only went there before they experienced life and then mainly hung with other medics (due to hours and medical school events and location isolating it vs other uni courses) , but decided they wanted to be doctors by age 13yrs in order they picked the right subjects and jumped thru the right ‘hoops’ instead of being the right people. And aping such bigotry they’d call vomit-inducing terms rephrased to sound like skills in a leadership course are actually high up there - because there are indeed lots of little interviews practice and junior visits or conferences of work experience where that’s the sort of thing most picked up given they aren’t going to get the science behind x in an hour of shadowing but they are going to get gist and demeanour etc,

Just like teachers in a classroom being taught demeanour to keep authority over a class early on and supposed things like blagginv it if you don’t know the answer ‘to keep respect’ from the very start before they’ve even learned real skills just so they can survive that time of getting said experience and classroom management.

The Mus stuff is just that for gps who get real education for most demographics but are taught only these one hour how to shuffle them out the door blagz if you spot another demographic we will dog whistle you on so that you never want to even get to know any of them to hear if that’s true and are actually scared and wary of them to the point you can’t even see straight or hear straight when they talk. Just giving ‘trained mode’ like dealing with a fire drill or ofsted when you’ve been landed with ‘the difficulty class’ and just have to get thru it.

It’s more than not funding any treatment or research it’s ensuring that even when an hcp is sat opposite you got x timeframe you don’t even get said hcp as they are trained to zone out in what in any other factual context is a passive aggressive move by being trained to not let your words go in etc

 

[V.R.T.]

As long as it was there it was always mainly to cover us

I think the desperation to shove ME/CFS back in the psychobehavioural/functional box shows how important it is to these people's whole house of cards.

If (when) ME is proven physiological, they are going to have a much harder time arguing that any of their bullshit is real. Because if they were wrong about us, and that was such a big proportion of people with peristing enduring functional medically unexplained totally not hysterical symptoms, how can their approach have any legitimacy?

 

[bobbler]

I think the desperation to shove ME/CFS back in the psychobehavioural/functional box shows how important it is to these people's whole house of cards.

If (when) ME is proven physiological, they are going to have a much harder time arguing that any of their bullshit is real. Because if they were wrong about us, and that was such a big proportion of people with peristing enduring functional medically unexplained totally not hysterical symptoms, how can their approach have any legitimacy?

Well even if it wasn’t about us

Given their move is to trans diagnosis on the basis of their papers like those from Carson and stone for fnd inciting and ordering gatekeepers to ‘be on the lookout for meeting their 10% of all patients quota’ and ‘ps they look female from adolescence onwards and you might want to write about trauma’

It would be a bit awkward if gatekeepers starting doing actual medical tests or conversations to sift out those with PEM for me/cfs even if it wasn’t a small proportion.

Because where would their claims about savings come from if they weren’t just offering to take all thing women off their hands and ‘deal with them’.

And it’s a bit like naming your lobster in the restaurant tank of a GP has actually started speaking to these people and realising their symptoms aren’t actually just ‘being ruminating catastrophisers’ as that unpleasant moss-morris and Chalder etc seems determined to spend her life’s work spreading about most other women to ensure they miss out on rights and healthcare etc

They don’t want gatekeepers to realise it’s real people like them they are hurting in their orders that don’t add up just to send them off to their patented but useless ‘courses’ no one even gets to the end of (but does the whole course get paid for by the nhs?) by you know hearing them. Or to find out tge symptoms arent what they are blagging and nothing to do with needing motivation to push thru so it’s like rehab etc

Then they’ll realise they’ve been turned into over-educated in science admin lackeys who are siphoning people off by demographic rumour and keywords based on dodgy ideology to certain kingdoms that didn’t exist when the nhs was set up with the intentions it was etc.

 

[Kitty]

Now we find even that is going, to be subsumed into generic wellness training and social prescribing.

How naive I was to think there was some integrity in the NHS.

I'm not quite so pessimistic.

Having individuals pushing this guff isn't the same as embedding it into NHS-wide practice. Partly because there is no real universality; the NHS is local. One GP can take a different approach to the same issue as a colleague half a mile away, and one hospital department needs to address wholly different service delivery challenges to the same department elsewhere in the country.

Yes the authors are trying to influence people, and yes they'll probably succeed to some extent. But it's not the case that all doctors are incapable of seeing through self-interested lobbying, or questioning why one category of burdensome chronic illness should be written off when another receives due attention.

[Edited for readability]