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

[Hutan]

Have you read many editorials for special issues, @Hutan? I'm sure many members of this forum are familiar with the format, but for those who are not: these editorials are written to summarise all of the papers in a special issue. They have to mention every paper. The author goes through each paper in turn and explains what the author argues.

The mention of my paper here is not some grand conspiracy - it's not a sign that I'm part of some 'narrative arc', used as a tool (or as a 'pawn', as I was told earlier on this thread) in service of BPS ideology. It's not implicitly suggesting anything other than that its author is following the format of an editorial for a special issue. Look at any special issue of any journal and you will see the authors of editorials following this exact format.

Responding to this, yes, I have read some editorials for special issues. For some of these, there has obviously been a public call for papers on a topic and the editorial addresses the collection of papers that have been submitted. For others, the editor has an idea of the story that they are trying to persuade their readers of and so they ensure that the collection of papers covers the necessary ground. That latter approach where authors are personally invited to submit a paper seems to be most common.

It was that invitation approach that was taken by the RCP for the special issue on 'Enduring symptoms: an immediate call to action'. Upthread, Katharine pushed back against my use of the word 'commissioned', but the journal editor actually used that word:

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.

The article was not commissioned. It was an invited submission. This meant that I was asked if I wanted to write the 'patient perspective' (which, as I explained in another comment, is a specific type of article FHJ include in all issues) and I agreed. I submitted an abstract for the article - exactly as I wanted to write it, with absolutely no external influence, from anyone (RCP or otherwise).

We know what the decision makers in the Royal College of Physicians think about ME/CFS. I have elsewhere provided evidence that Theresa Barnes, the Editor of this Special Issue and office holder of the RCP, is deeply involved in promoting clinics for functional diseases. She moves in liaison psychology circles e.g. presenting at their conference, specifically on Persistent physical symptoms in outpatient care: RCP and liaison psychiatry Interface.

Theresa Barnes and the RCP clearly have an agenda with the special issue, it is designed to persuade. If anyone has any doubt, they should just re-read the Barnes editorial. And, the patient perspective papers are used to further that agenda. The patient perspective papers do not argue against the idea that what is needed is holistic clinics. The patient perspective papers are there to illustrate the problem - the substantial unmet need of this patient population - that the other papers present the solution for.

Katharine denies this is all a grand conspiracy, and she is right. It's not a conspiracy because what the RCP is doing is not being hidden. I'm not saying that Katharine Cheston supports BPS views, not at all. But, I am concerned that she still does not seem to see that her paper, limited in its scope as it is, has, without doubt contributed to the furthering of the RCP's agenda. I haven't yet seen Katharine push back against the RCP's plans - I really hope that she will.

We know that Katharine intends to continue to be involved in ME/CFS advocacy. Perhaps further work with the RCP is planned. It is for those reasons that I am writing here again. I would really like Katharine to be aware of how her involvement and her association with AfME may be used by the RCP and BPS proponents. Here's Barnes calling for more work to quantify the impact of persistent symptom conditions so that the case for more BPS services in order to reduce costs to health services and society can be made more persuasively:

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.

 

[Jonathan Edwards]

I agree with your analysis, @Hutan but Katherine is not in a position to help out here. I think that should be acknowledged.

 

[Hutan]

I should say, one thing I liked about Katharine's paper, and something that I don't think has been discussed much, is her contention that people with ME/CFS tend not to be big users of the health system. The RCP obviously doesn't believe that, but it was good that Katharine made the point.

 

[Trish]

We need the ME/CFS patient organisations to make a united effort to push back against the approach being pushed by the RCP in this special issue.

Katharine Cheston can't be expected to do this on her own, but I hope now she has been alerted to the problem she may be able to do whatever she can if an opportunity arises to point to the need for medical care as for all physically ill people, not generic wellness nonsense.

I note that Katharine has said on this thread that she does not intend to participate further in this discussion, which is why I am talking about rather than to her.

Katharine, if you are reading this, I hope you will understand that your efforts are appreciated, and I hope you will have the opportunity to push back at the solutions being proposed in the editorial. I don't expect you to solve such a huge problem on your own, but you could play a small part in both communicating with the RCP people, and in working with AfME if you get the opportunity to do so.

 

[Jonathan Edwards]

I should say, one thing I liked about Katharine's paper, and something that I don't think has been discussed much, is her contention that people with ME/CFS tend not to be big users of the health system.

So presumably the 30% of GP consultations with 'enduring symptoms' are not people with enduring symptoms after all.

 

[Hutan]

I agree with your analysis, @Hutan but Katherine is not in a position to help out here. I think that should be acknowledged.

I'm not sure that I understand why she isn't in a position to help. Can you explain?

After completing her PhD and this work with the RCP, she became the recipient of a post-graduate fellowship from the Foundation for the Sociology of Health and Illness in order to do more work on shame in medically unexplained illnesses.

A Trustee and the Treasurer of the Foundation paying her is Catherine Pope who has been a leader of the PACFIND work looking at how to provide services to people with fibromyalgia. The arguments in the PACFIND papers are similar to the RCP editorial i.e. there is an unmet need, patients are doctor shopping and having expensive tests desperately trying to prove that they are ill, what is needed is holistic services that don't blame and shame patients but effectively divert them away from doctors. The publisher of the journal of the Foundation is Wiley, the same publisher that is Cochrane's publisher. Another senior author of PACFIND is Chris Ecclestone, who is linked with Cochrane and definitely of a BPS mindset.

Of course, I don't know if Katharine knows about the link between the Foundation and the work and interests of one of its Trustees. There are connections here though that may mean that Katharine has a unique ability to advocate. Or, if she is not very careful, to add the appearance of patient support to the RCP and PACFIND ideas.

Are you suggesting Jonathan that Katharine can't help because she has to protect her career? I think she still could though.

Or are you suggesting that she can't help because she has no influence?
Some people have expressed concern that the AfME Big Survey frames questions about existing services in a way that makes them sound more useful and desirable than they are (e.g. specialist services). AfME could be doing much more to capture and publicise the dissatisfaction people with ME/CFS have with the existing clinics and BACME ideas. So, not that people can't access a specialist clinic, but that they don't want what the clinics are offering. I think Katharine has been running the survey and writing the questions, so she could make the survey much more effective.

Nightsong wrote on another thread this about AfME:

I have had ME/CFS for over two decades, and followed events closely in the last few while I have been more severe, and in all that time I have never seen any statement from AfME that expressed any negative sentiment about the clinics. Their recent survey referred to the clinics as "specialist services"; they are neither.

They may not have issued a formal statement that states openly that they support BACME or are satisfied with the NHS's clinics, but they certainly have not publicly given any indication that they have campaigned against, complained about, or objected to them in any way.

I think that Katharine is valued by AfME. I think she could use that influence to effect change, to help AfME make it very clear that BACME type clinics are not seen as useful, that we don't want what the RCP is campaigning for.

 

[Trish]

I think part of the problem with asking Katharine to try to influence the RCP is that as far as I know she is not a clinician, so the doctors at the RCP would see no reason to listen to her views on what sort of services the NHS should provide for pwME.

 

[Hutan]

But, apparently the RCP like having the patient perspective included in their campaigning. So, at the very least we should be able to clearly say 'we don't want what you are offering'. And point to the Magenta study, among others.

Organisations like the RCP like to have pet patient organisations. Just look at the role of Versus Arthritis in the PACFIND (fibromyalgia) project. Hopefully we can make sure our organisations do not become pets? And the RCP isn't everything. Someone has to pay for these holistic clinics. Maybe the funders will be open to hearing that they are a waste of money.

Katharine certainly doesn't need to solve the problems singlehandedly. Frankly, even just not making things worse is a significant achievement for an ME/CFS advocate (and I say that with sincerity, not with sarcasm - it's so easy to, with the best intentions, make things worse. It's so damn hard to make things better.)

 

[Jonathan Edwards]

But, apparently the RCP like having the patient perspective included in their campaigning.

You seem to be forgetting that the whole issue we are wrestling with is doublethink.

I refused to toe the line as a junior and I paid a very big price for it. Fortunately, I came across a boss who thought I had something to contribute. But Katherine is working amongst people for whom toeing the line is the meaning of life.

 

[bobbler]

So presumably the 30% of GP consultations with 'enduring symptoms' are not people with enduring symptoms after all.

I think this type of stat they love to get away with throwing in as if fact need to be constantly proved as I’ve seen they’ve a tendency to lie and for that tendency to billow to the point of extremes and going past common sense when unchecked which further goes to show how not based in bottom up anything they are just a wish to increase the ‘evidence’ each time from an area that see evidence as a word used by themselves as something with a looser regulation etc

What the heck is Barnes doing getting involved in this has been my question on all this - because unless the answer is that she has been strongly incentivised with offers of future x then it doesn’t add up that someone from her background ever had any interest or anything to do with either me/cfs or any of the areas she now talks on. It’s weird frankly unless it’s ’I’ve Signed up for this new role and I’m being paid for it so’ becomes the simple explainer.

And given most people don’t want to touch politics or touching me/cfs with a barge pole then I’d guess it’s not small rewards because the risk and effort wouldn’t be worth it just for a small thing and someone who wasn’t green would know it.

But Barnes isn’t a GP so why on earth is she apparently claiming to know what 30% of GP appointments are about or who they are with and for a literally newly made up term that didn’t exist a year ago if the claim is it covers everyone in 30% of all appointments then it obviously isn’t anything medically defined but just a political term for a large chunk of the population and a large chunk of real medical care that is needed that someone has their eye on now taking out of the proper medical system.

 

[Utsikt]

You seem to be forgetting that the whole issue we are wrestling with is doublethink.

I refused to toe the line as a junior and I paid a very big price for it. Fortunately, I came across a boss who thought I had something to contribute. But Katherine is working amongst people for whom toeing the line is the meaning of life.

Even if it’s completely unintended, this article will be used to bolster the case for even more BPS. It makes it seem more urgent. It’s the same «asking for help, but not specifying what help»-issue that the associations have been struggling with for years.

All of this was predictable. So it could have been avoiding by pulling out of the special issue once the straightjacket was laid out in front of her.

We have to stop lining up the pins for them to knock down. I don’t see how this is any different than the bio-babble issue we discussed earlier.

 

[Trish]

All of this was predictable. So it could have been avoiding by pulling out of the special issue once the straightjacket was laid out in front of her.

I think this is unfair to an individual to expect this much from her. Katharine did her best to lay out clearly the serious problems very sick people with ME/CFS face in her article. That will, I hope hit home with at least some readers. Not everyone here agrees that the net result of including the two articles about patients experiences is necessarily negative. I suspect if you asked most pwME, they would be glad the patient experience articles were included.

It is the editorial and the other articles that are dreadful and paint a false picture of what is needed for people with ME/CFS and the other conditions that have been lumped together.

The combined efforts of thousands of pwME, dozens of ME/CFS organisations could not shift Cochrane an inch, in fact they doubled down, making the situation worse for us. It has occurred to me that it's possible all those hours I and others put into that campaign may have been counterproductive, giving Cochrane the excuse that it was too costly dealing with all the objections. We often can't know the effect of even our best efforts.

I think we need to put this in perspective and stop singling out one junior researcher, especially one from a non clinical field who will not be listened to on matters of clinical care by senior physicians with set blinkered views, however hard she tries.

 

[rvallee]

I think this type of stat they love to get away with throwing in as if fact need to be constantly proved as I’ve seen they’ve a tendency to lie and for that tendency to billow to the point of extremes and going past common sense when unchecked which further goes to show how not based in bottom up anything they are just a wish to increase the ‘evidence’ each time from an area that see evidence as a word used by themselves as something with a looser regulation etc

Reality is probably even worse than that, in that it's likely far more than 30% since medicine can't identify most problems economically, and so doesn't bother. Likely more than half of GP consults include several enumerations of symptoms that the clinician can't/won't identify mainly because it's not worth it, oftentimes because it'd be too invasive anyway. We simply don't have the technology for this.

In fact the vast majority of those problems are never investigated, and thus are unexplained symptoms by definition. They are mostly things that ebb and flow, then natural aging comes into play, and while it's true that most of those symptoms are not a concern, our current level of technology simply only allows to investigate a small fraction of them, usually ranked and filtered as being most likely to indicate known disease processes with known clinical pathways. It's a subset of a subset of the set of real problems.

What this fake 30% hides is the fact that modern medicine remains primitive, is barely in its infancy, and is still ignorant of most things it deals with, for reasons that are pretty much similar to how it's not feasible to completely stop the flow of illegal goods: it's way too expensive. It just looks so much more convincing to pretend that medicine can handle 70% of the problems it is presented with, when in real life it's probably not even 10%, at least not in an actionable way.

And then there's a split: can't and can't-and-won't. Many of those symptoms fall in the can't, medicine doesn't know how to deal with but wants to, whereas we fall in the sub-category where they can't do something, yet, but also don't even want to, having decided that it's not a medical issue, which is the main reason they can't.

This new position seems to pretend that they want to do something, while as a matter of fact making everything about it worse, which is no change from doing nothing. But it pushes forward the lie that they do want to do something, something that has zero chance of improving outcomes, which they don't care about.

Which to me suggests that the growing evidence is starting to pile up enough that it's impossible to ignore, but they still don't want to do anything competent about it, and so are throwing this hand-wavy bullshit, with absurd assertions like "rehabilitation is a human right" bullshit, from people who clearly know the rehabilitation they are peddling doesn't work.

 

[rvallee]

All of this was predictable. So it could have been avoiding by pulling out of the special issue once the straightjacket was laid out in front of her.

We have to stop lining up the pins for them to knock down. I don’t see how this is any different than the bio-babble issue we discussed earlier.

It was but this is all about power flexing its muscles over people it has complete control over. There is nothing that can be done against a system that has decided to fail, that insists that failure is the only thing they accept. They will always try to screw us over, and if we ever get close to a point where we catch them in a bind, they will simply slip out because they are the system, they control everything about us and have no real obligations to do anything, they can literally pretend that doing something harmful is good. Same stuff as history being written by the winners.

It's one of those problems where we can do everything right and still lose, because the decisions are not only completely out of our hands, they are made by people hostile to our interests, our well-being, even our very existence, and all not only from the very top but all throughout the system. It's mostly just human folly. Can't win against insanity when insanity rules.

 

[Hutan]

I think this is unfair to an individual to expect this much from her. Katharine did her best to lay out clearly the serious problems very sick people with ME/CFS face in her article. That will, I hope hit home with at least some readers. Not everyone here agrees that the net result of including the two articles about patients experiences is necessarily negative. I suspect if you asked most pwME, they would be glad the patient experience articles were included.

That most pwME might be grateful that the patient experience articles were included is a substantial part of the problem. Oh well, we might think, at least it's one step forward, maybe the RCP with its editorial subtitled 'debunking the myths of functional disease' is actually on our side and is working for us. Maybe they are listening now. Maybe if doctors understand how awful this disease is, they will be more helpful.

But, sure, it might hit home to doctors that a person loses their teeth because they don't have the capacity to brush them. But, if the doctors think that the problem of a lack of capacity to brush one's teeth is psychosomatic, the answer is a program of goal setting and pacing up, stat! The problem we have is not that doctors don't accept that 'persistent symptoms' are debilitating. It is that they think rehabilitation treatments are helpful.

For those promoting rehabilitation clinics as the answer, patient perspectives that only suggest there is a big unmet need for sympathetic treatment of enduring symptoms/medically unexplained symptoms etc are just what the doctor ordered. Yes, maybe most pwME might be grateful with an article that just says how hard it is to have ME/CFS, but we need our advocates to be thinking more steps ahead on the chess board than that. We need to understand what we are dealing with.

The combined efforts of thousands of pwME, dozens of ME/CFS organisations could not shift Cochrane an inch, in fact they doubled down, making the situation worse for us. It has occurred to me that it's possible all those hours I and others put into that campaign may have been counterproductive, giving Cochrane the excuse that it was too costly dealing with all the objections. We often can't know the effect of even our best efforts.

And that is why we need to work to understand what we are dealing with, and make sure our advocates clearly understand what they are dealing with and are willing to stand against things that will harm us. If advocates are in a compromised position (and I don't know if Katharine is, but there are some red flags that I'd really like her to address), then it may be that they aren't the best advocates to speak for people with ME/CFS in some situations or to undertake work aiming to produce evidence evaluating ME/CFS services. Our charities need to understand the ways in which the people they use for advocacy might be compromised.

(I forgot to note that Catherine Pope, the Trustee and Treasurer of the Foundation that pays Katharine's salary, and who is part of a project advocating for BPS clinics for people with fibromyalgia, is part of the machinery of NIHR and so is contributing to decisions about what researchers get funding.)

I think we need to put this in perspective and stop singling out one junior researcher, especially one from a non clinical field who will not be listened to on matters of clinical care by senior physicians with set blinkered views, however hard she tries.

If that researcher is putting themselves forward to advocate on behalf of people with ME/CFS, then I think it is reasonable to ask about their views about things like the rehabilitation clinics, and to understand what they believe and who pays their bills.

It's definitely not a singling out. I think we need to understand the ME/CFS-relevant views of the trustees of our charities, of the staff in those charities, of all the people who put themselves forward to speak on our behalf. And we need to try to ensure that they understand the environment that they are working in.

 

[kacheston]

I'm returning to this thread purely because it discusses my work on the Big Survey (as I outlined in my previous message). I'll engage with those aspects of the discussion, below.

@Hutan you quote this from a previous thread:

"I have had ME/CFS for over two decades, and followed events closely in the last few while I have been more severe, and in all that time I have never seen any statement from AfME that expressed any negative sentiment about the clinics. Their recent survey referred to the clinics as "specialist services"; they are neither.​

​

They may not have issued a formal statement that states openly that they support BACME or are satisfied with the NHS's clinics, but they certainly have not publicly given any indication that they have campaigned against, complained about, or objected to them in any way."​

But, interestingly, you failed to quote my response. I can't actually find this - you will have seen it, because you quoted the previous poster, and I responded to them - but I outlined that we used the term 'specialist services' because these services are called different names in different parts of the UK, so we needed a catch-all term. We considered using 'tertiary care' (i.e., to distinguish these services from GP services) but concluded many people wouldn't know what this meant. 'Consultant-led services' was out, too, for obvious reasons. It's not a value judgement - I've written, publicly, about my own experience of a paediatric fatigue clinic, and its lasting impacts. If any of you have any better suggestions, I'll gladly add these to my document of suggestions/reflections for the next Big Survey!

(Edited to add: apologies, @Hutan, if in fact this is referring to a different post, to which I did not respond. I know that I did respond to a post discussing the usage of the term 'specialist clinics', so if I've assumed wrongly here, I apologise. It's 8pm here in the UK and been a long working day!)

I also wanted to respond to this, because frankly @Jonathan Edwards I was insulted by it.

You seem to be forgetting that the whole issue we are wrestling with is doublethink.

I refused to toe the line as a junior and I paid a very big price for it. Fortunately, I came across a boss who thought I had something to contribute. But Katherine is working amongst people for whom toeing the line is the meaning of life.

This patently is not the case. I am not 'toeing the line'. You do not know me, you've never met me, you do not work with me, so I don't know how you have so confidently reached this conclusion - about a total stranger. It's Chalder-esque levels of evidence and logic!

Doing this work, in this way, has had significant professional and personal consequences. Funnily enough, becoming severely ill at 15 changes how you feel about all of this...

Many of you have clearly already made up your minds about me, so honestly I don't see much point in putting my point across, or in addressing the false assumptions made about me above. I think that would be a waste of everyone's time and energy. I'll leave it there.

 

[Hutan]

(Edited to add: apologies, @Hutan, if in fact this is referring to a different post, to which I did not respond. I know that I did respond to a post discussing the usage of the term 'specialist clinics', so if I've assumed wrongly here, I apologise. It's 8pm here in the UK and been a long working day!)

Yep, the passage I quoted was from a public thread - here - and there was no response from you to that. (If there is an up arrow on a quote and you click on it, that takes you to the post.)

I see a similar point was made on a Members Only thread about the Big Survey, and there was a reply there which I had not seen - here's the link. Thanks for that. I hope that you will be able to find a better term for the clinics - NHS CFS/fatigue clinics? I think Nightsong's point is a valid one - I don't think we have seen statements from the two large UK charities about the problems with those clinics, certainly not lately and certainly not loud. I hope that AfME's survey might be one way to move toward such a statement, because we definitely need the problems with these clinics expressed as a patient perspective.

You do not know me, you've never met me, you do not work with me, so I don't know how you have so confidently reached this conclusion - about a total stranger.

Fair enough. I guess we want to get to know you, at least with respect to things that might impact on your advocacy., which is why we are trying to engage. I don't think it is true that 'many of you clearly have made up your minds about me'. We have questions. I think if you were in our position, you too would have those questions.

 

[Jonathan Edwards]

This patently is not the case. I am not 'toeing the line'. You do not know me, you've never met me, you do not work with me, so I don't know how you have so confidently reached this conclusion - about a total stranger.

I did not intend to indicate I knew why you did what you did, @kacheston, but merely to say that a legitimate excuse would be self-preservation.

If you had other motives I am a bit puzzled. Having discussed this special volume to papers at length it is clear, at least to me, that it was a political exercise of a particularly nasty sort. Pretty much all the other authors will have been engaged because it will earn them Brownie points that will contribute to tens of thousands in salary bonuses. Patients are treated as means to an end and deliberately paImed off on to a service that is worse than useless. I am ashamed to have been part of the system.

 

[Kitty]

Many of you have clearly already made up your minds about me

I don't think so; I certainly haven't. I thought the article was rather ill-advised, but I can see myself doing something like that at one time. It's been a long learning journey and the distance I've travelled is huge.

I thought the survey was an excellent piece of work, and the way you engaged with us and really listened to people's responses was 5-star good practice. It ought to be a case study really.