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

[Jonathan Edwards]

Yes, your link gets straight there. I wonder if you have some sort of approved entry. Via the OP link I have to go through a robot check and get nothing but yours.

 

[Jonathan Edwards]

Mmm

The editorial starts:
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.

This is straight BPS misinformation. We desperately need to dissociate from this view. These are code words used by physicians to justify dumping people on GPs, physios and psychologists. The pretence becomes ever more frightening each time I see it.

 

[kacheston]

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?

They were about 'enduring symptoms' (i.e., 'medically unexplained symptoms'), a category into which - as we all know - ME/CFS is often pulled. ME/CFS was not the subject of the meetings, though.

The meetings weren't confidential. They also weren't primarily discussions about ill people - by virtue of all but one attendee being clinicians, they were about clinical practice. I just don't want to go into detail on a public forum, for the reasons I describe above.

Also just for clarity, as far as I am aware this work (at least, what I witnessed/was part of) had absolutely nothing to do with 'a disastrous plan for ME/CFS and no meaningful care'.

I edited to add '(at least, what I witnessed/was part of)'
Edited again to add 'They also weren't primarily discussions about ill people - by virtue of all but one attendee being clinicians, they were about clinical practice.'

 

[Nightsong]

Among the other contributions to this issue there is a debate between Burton & a rheumatologist at Imperial about "services for patients with symptom-based disorders":

https://www.sciencedirect.com/science/article/pii/S2514664525002619

The entire debate is certainly a world away from what pwME actually want & need: between an advocate of psychobehavioural clinics and someone who wishes to push "symptom-based disorders" into the realm of "social prescribing link workers and health and wellbeing coaches".

I despair.

 

[Hutan]

Here's the link to the editorial for the special issue on 'Challenging myths: debunking functional disorders' by Theresa Barnes.

There's not much debunking going on in the editorial. It's all very much BPS business as usual, with the biological given a bit of acknowledgement, but only as part of a mix. 'Holistic' gets a substantial run, and multi-disciplinary teams is there too. There's some mixed messages and then some very clear ones about keeping costs down.

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.

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 watch potential developments with great interest. It should be acknowledged that there are other theories about potential mechanisms and treatment strategies for symptom-based disorders in an area which is fast evolving and not without controversy.

In addition, clinicians frequently face constraints in terms of resources. Limited time during consultations and the absence of appropriate multidisciplinary services make it difficult to offer comprehensive support. The inability to access the necessary teams or services means that clinicians may not be able to provide the holistic care that these patients require, ultimately affecting patient outcomes.

We must recognise the multisystem nature of symptom-based disorders. Patients will often experience enduring symptoms related to multiple areas or systems within the body. We must empower clinicians in all fields to positively identify the features of symptom-based disorders, to prevent multiple referrals, investigations and even unnecessary interventions. Over-medicalisation and over-diagnosis are detrimental to patients.

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.

 

[Jonathan Edwards]

Also just for clarity, as far as I am aware this work had absolutely nothing to do with 'a disastrous plan for ME/CFS and no meaningful care'.

I think that is misguided. It is symptomatic of the RCP policy that has driven ME/CFS care into the hands of people who have no understanding of the disease. I know about this because I worked with the physicians who manipulated this situation. The contribution mentioned by Nightsong seems to be a clear illustration of what has been engineered behind patients' backs. As a physician I am deeply ashamed of my colleagues behaviour.

 

[kacheston]

I think that is misguided. It is symptomatic of the RCP policy that has driven ME/CFS care into the hands of people who have no understanding of the disease. I know about this because I worked with the physicians who manipulated this situation. The contribution mentioned by Nightsong seems to be a clear illustration of what has been engineered behind patients' backs. As a physician I am deeply ashamed of my colleagues behaviour.

Sorry, you'll see I made an edit, to clarify what I meant. It now reads: 'as far as I am aware this work (at least, what I witnessed/was part of) had absolutely nothing to do with 'a disastrous plan for ME/CFS and no meaningful care'.'

By 'this work', I meant the series of meetings that I attended.

 

[Trish]

I am afraid that major alarm bells ring in my head. I can see no reason why discussions about ill people should be confidential,

I can see the point that discussions, for example, of plans for a series of articles for a journal, might be done privately, and therefore individuals taking part in that discussion would consider it unprofessional to make public comments about what what discussed afterwards without the other participants permission. They might, for example, have included revealing as yet unpublshed research results.

 

[Jonathan Edwards]

I think it quite likely that all the papers except Katherine's have been held back from the journal link because they might 'upset the difficult children'. Certainly the Burton discussionis likely to have been considered 'best kept quiet'.

 

[Hutan]

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.

This is looking very concerning indeed when combined with the recent MEA and Elaros work. I think there's a need for more openness about what is being planned.

Also just for clarity, as far as I am aware this work (at least, what I witnessed/was part of) had absolutely nothing to do with 'a disastrous plan for ME/CFS and no meaningful care'.

That editorial suggests that the RCP is deeply committed to a plan for care that I would term, if not disastrous, then at least no improvement, likely to harm and a colossal waste of money.

 

[Jonathan Edwards]

By 'this work', I meant the series of meetings that I attended.

I am afraid that I think that work was very much part and parcel of the strategy that leads directly to denying care.

 

[Trish]

In the context of what is being revealed about the articles in the journal and the plans for care, I think it's really important to see @kacheston getting a toe hold with an article that points clearly to the dangers of the ongoing BPS approach. I hope the other article writers and RCP people really take on board from Katharine's article the harm they are doing.

 

[Hutan]

I can see the point that discussions, for example, of plans for a series of articles for a journal, might be done privately, and therefore individuals taking part in that discussion would consider it unprofessional to make public comments about what what discussed afterwards without the other participants permission. They might, for example, have included revealing as yet unpublshed research results.

I could see that too, Trish. But Katherine tells us that the RCP discussions weren't about planning a series of articles or even about patients, but rather about clinical practice.

The meetings weren't confidential. They also weren't primarily discussions about ill people - by virtue of all but one attendee being clinicians, they were about clinical practice. I just don't want to go into detail on a public forum, for the reasons I describe above.

I hope the other article writers and RCP people really take on board from Katherine's article the harm they are doing.

Yes, I hope so too. But I suspect the message the readers of the special edition will take away, primed by the editorial, is that these poor people shut away in the dark desperately need the help of a multidisciplinary team to help them get their lives back on track and not costing the government money.

 

[kacheston]

I think it quite likely that all the papers except Katherine's have been held back from the journal link because they might 'upset the difficult children'. Certainly the Burton discussionis likely to have been considered 'best kept quiet'.

I think this is incredibly unlikely to be the case, and more likely to be e.g., the browser you're accessing it from. I tried on a private browser (i.e., logged out from my institutional account) and it worked fine.

In the context of what is being revealed about the articles in the journal and the plans for care, I think it's really important to see @kacheston getting a toe hold with an article that points clearly to the dangers of the ongoing BPS approach. I hope the other article writers and RCP people really take on board from Katharine's article the harm they are doing.

Thanks, Trish. This was certainly what I was trying to do, and why I took up the invitation to take part...

 

[Jonathan Edwards]

I hope the other article writers and RCP people really take on board from Katharine's article the harm they are doing.

I wish it were so, @Trish. But can you see Burton changes his position? The inclusion of a patient perspective illustrates how important his biopsychosocial work is. He needs more clinics to heal these distressing mind-body problems.

 

[Jonathan Edwards]

I think this is incredibly unlikely to be the case,

Maybe, but we know this is being done. The NHS educational courses for severe ME/CFS were blocked for general access. The BMJ restricts ertain material. BACME does not allow patients to be members. Even the DecodeME Showcase meeting was not advertised much beyond the investigators presenting.

 

[Hutan]

In the same way that Cochrane used the IAG committee for years to suggest that patients were being listened to, I think the RCP has used patient representatives to suggest care and concern for people with, well, whatever they are calling these disorders today. And to help make the case for more funding of multidisciplinary care, services described in the editorial as follows:

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

Katherine, I know it feels nice to be on the inside, party to conversations that the average patient is not. I know there's the thought that being "reasonable" and conciliatory is the way forward. But, with people deeply committed to the BPS paradigm and with the power they continue to hold, it just doesn't end well. It's harsh of me to say that, I know, and I know you are trying to do good things. But, there's a lot of politics at play.

 

[V.R.T.]

This article is good, although I think if it's intended for doctors the anecdote about the teeth is the exact sort of thing more callous doctors who believe we're all hypochondriacs tend to laugh at.

It was good that the conclusion highlighted DecodeME. And the section on disengagement from medical care really hit home as someone who has several issues they have not sought care for because of past mistreatment and the likelihood of encountering doctors who are hostile or simply do not believe i am as sick as i am.

This quote from an interviewee is spot on.

‘to have your life absolutely turned upside down and kind of be left, really… it’s just really awful and could be so much better, and should be so much better’.

 

[V.R.T.]

I know it feels nice to be on the inside, party to conversations that the average patient is not. I know there's the thought that being "reasonable" and conciliatory is the way forward. But, with people deeply committed to the BPS paradigm and with the power they continue to hold, it just doesn't end well.

Agreed.

 

[Trish]

Katherine, I know it feels nice to be on the inside, party to conversations that the average patient is not.

I don't think that's what Katharine is saying at all. She was invited to meetings that were not minuted or made public for whatever reason. It's normal to respect other participants in a meeting by not retrospectively making public what they said without their permission, particularly as none of it was recorded or minuted.

That would make me uncomfortable, and perhaps in any future meetings I would ask for minutes to be made public. I doubt it 'felt nice' except in the sense that it enabled Katharine to do the important task of showing to the people involved that their approach is causing harm. Whether they listen or not, it's worth trying and I thank Katharine for trying.