The Concept of ME/CFS

[Jonathan Edwards]

They seem to hold a psychosomatic view of ME/CFS.

Not all of them. That is the bare reality. Physicians with opposite assumptions managed to create a situation where Maeve had no chance it seems to me. Unfortunately it seems likely that we will never know exactly what went on but I have had accounts from several people directly involved.

 

[Nightsong]

Why did the NICE guideline call it a 'complex multi system disease' when it isn't? Because everyone was happy to include that guff to keep certain other people happy and because they thought it did no harm. I think that may be a mistake.

You would know far better than I but perhaps some of those inclusions, and the holistic-multidisciplinary stuff, were necessary to get it across the line. If those compromises were necessary I think they would be worth it - to have rejected compromise would have left CG53 in place, which would have been a disaster for us. A guideline that both Jo Daniels and Willie Weir both signed up to was one hell of an achievement.

In simple terms Maeve died because enough people, maybe including her, thought she was going to die anyway of a progressive neurological disease. That is a catastrophe.

The view I formed, having listened to about 3/4 of the testimony - admittedly an very incomplete view - is that she died because the team involved in caring for her refused to escalate to more intensive artificial nutritional interventions, had an exaggerated view of the risks of so doing, and refused to accommodate her condition in a way that she was able to tolerate. That was based on belief but certainly not the belief that she had a progressive neurological disease.

I'm not sure quite what Strain's views were - I was too ill to listen in on the day he gave his testimony so I can't say - but he wasn't making decisions on feeding or directly responsible for her care & most of the others that I heard give evidence all gave away hints of viewing ME/CFS as a functional illness. I think it was said that she only had a single home visit from Weir & although he wrote to those involved in her care it seemed that the RD&E physicians largely disregarded his suggestions.

 

[Kitty]

The key point of the article is to disentangle the confusion with historical concepts that is getting in the way of any dialogue with physicians and I worry may actually be making individual patients worse.

It seems to me the article is trying to draw a useful line in the sand between the history and now, but also call bullshit on the pretence that we understand what's going on.

It's important to underline that doctors can diagnose it, discuss it, and be genuinely helpful to people trying to manage it without knowing anything about causation.

 

[rvallee]

Even Simon Wessely said to me in an email that he was worried the PACE trial would mean that all sorts of incompetent psychologists would be recruited to treat patients without knowing what they were doing.

Very hard to see how this was a genuine concern of his, he's been absurdly wrong most of his career but he is not delusional. He is very calculated and purposeful in what he does, and this is the model he has sold, and the model that PACE used. And the model that IAPT used, with similar outcomes. In fact this is basically the only possible outcome of the biopsychosocial model, he's definitely smart enough to know this. Sounds more like CYAing. Even if just in a private letter, at best some odd twisted rationalization from someone who knows they caused horrible things but can't bring himself to let go of all the privilege it brought him.

 

[SNT Gatchaman]

In simple terms Maeve died because enough people, maybe including her, thought she was going to die anyway of a progressive neurological disease. That is a catastrophe.

No question this was all a blundering catastrophe, sadly being repeated right now. However I don't think Maeve or her family thought she had a progressive and inevitably fatal neurological disease. I think Maeve simply realised the futility of her situation, that without support to live she would die. This was solely due to the failure of the specialists to meaningfully attempt to stop her starving and dehydrating to death.

She tried very hard but was powerless when the only people that could help her continue to live refused to. She kept saying, and wrote, that she wanted to eat and to live, and at the end she said she and her family had tried their hardest.

There was much post hoc rationalisation and obfuscation at the inquest, but let's say it genuinely was thought to be a progressive neurological disease. ALS is a progressive and devastating neurological disease, but people are supported to live as long as they can, treated for pneumonia - sometimes even living a long lifespan and winning many awards in theoretical physics and featuring in Star Trek.

(And palliative care is available for progressive neurological diseases, though it was denied Maeve.)

 

[Hutan]

Worryingly, not only has the psychological medicine approach failed but its proponents have shown no recognition of their lack of understanding of either the illness or research methodology (White, Anomalies paper). This is hard to square with the fact that there is no evidence for any reduction in the prevalence of the illness and people are still dying of avoidable dehydration.

I'm not sure the 'reduction in prevalence' is a good argument for psych factors being wrong.
And should it be 'dehydration and starvation'?

For about 2 decades the psychobehavioral treatment approach has dominated with what is claimed to be an effective treatment modality. An effective treatment would obviously reduce prevalence, it can't not.

Sorry if I am too late with this, but it seemed to me when I read it that inclusion of 'treatment' in that first sentence is needed to make the second sentence true. Rvallee expanded on the reasons. So:
"Worryingly, not only has the psychological medicine approach failed but its proponents have shown no recognition of their lack of understanding of the illness or its effective treatment, or indeed even of research methodology (White, Anomalies paper). This is hard to square with the fact that there is no evidence for any reduction in the prevalence of the illness and people are still dying of avoidable dehydration and starvation."

I single out physios and psychologists because in my experience the situation for OTs, nurses and doctors is significantly different. Their jobs are seen in terms of doing whatever there is good reason to do and not treating simply for the sake of filling an assignment slot. Physios and psychologists have traditionally been expected to treat if asked to. I agree that that is as much a problem with those asking for treatment but in practical terms I am not sure that is relevant to the context. We would be better off without physios and psychologists being substantive members of a team as far as I can see and their lack of being prepared to say they have nothing to offer is the crunch.

I agree with the comments about focussing more on what we want people involved in the care of people with ME/CFS to be able to do (and/or what we don't want them to do), rather than criticising specific professions. Not everyone will need an OT, just as not everyone will need a physiotherapist or a psychologist. But, my understanding is that someone who is bedbound could well benefit from a well-trained physiotherapist who can help minimise the risk of medical complications of immobility. (If I'm wrong in that, someone needs to tell me, because I have been recommending that clinical guidelines suggest that people who are bed bound are given advice on how to prevent complications from immobility.) And someone who is having a really hard time dealing with their situation may benefit from time with a psychologist or counsellor who has a lot of insight into the impact of debilitating chronic conditions and how to best cope. We all know that some nurses and doctors can do plenty of harm as a result of accepting 'this is the way it has always been done' too. Psychology is a very broad field, and there are certainly some branches of it that involve critical thinking and attention to evidence, even if the aim of some of that thinking is only to sell more of something.


Re 'Conceptualising ME/CFS'

The article is not about some new conceptualisation of ME/CFS or something emerging. The concept I am talking about has been around for twenty years and has been well described by others.

I agree, I don't think 'conceptualising' is an improvement. It makes it sound as though this is something happening now, and, by implication, an innovation by the author. Whereas 'the concept' makes ME/CFS sound more like a real discrete and current entity, albeit something of a placeholder. I'm actually not super keen on 'concept' either. Synonyms include 'belief', 'conviction', 'opinion', 'conceit'. I mean, I don't think people would write about 'The concept of malaria', for example. It signals that ME/CFS does not yet qualify to be a disease, that instead it is a drawing of a circle around a collection of symptoms and the people who have them and that there is uncertainty about whether that circle is describing something discrete. But, the first paragraph sets things up well, as an answer to the question of why the concept of ME/CFS is justified. And perhaps, until we know more, 'concept' is the best we can do.

 

[SNT Gatchaman]

Ok, fair points about "conceptualising".

And perhaps, until we know more, 'concept' is the best we can do.

Maybe: "The Medical Concept of ME/CFS".

 

[AliceLily]

I agree with the comments about focussing more on what we want people involved in the care of people with ME/CFS to be able to do (and/or what we don't want them to do), rather than criticising specific professions. Not everyone will need an OT, just as not everyone will need a physiotherapist or a psychologist. But, my understanding is that someone who is bedbound could well benefit from a well-trained physiotherapist who can help minimise the risk of medical complications of immobility. (If I'm wrong in that, someone needs to tell me, because I have been recommending that clinical guidelines suggest that people who are bed bound are given advice on how to prevent complications from immobility.) And someone who is having a really hard time dealing with their situation may benefit from time with a psychologist or counsellor who has a lot of insight into the impact of debilitating chronic conditions and how to best cope. We all know that some nurses and doctors can do plenty of harm as a result of accepting 'this is the way it has always been done' too. Psychology is a very broad field, and there are certainly some branches of it that involve critical thinking and attention to evidence, even if the aim of some of that thinking is only to sell more of something.

@Hutan Just for myself. I remember when I was at my sickest I was too sick to talk or sit for long. I was very distressed that someone would make me do things that would make my terrible situation worse. The less involved the better it was for me.

If anyone remembers having to go to A@E in a weak sick state for something other than ME, you will remember how hard it was when you are not left alone, instead you are having to answer the same questions over and over to different hospital staff. You just want to be left alone because you are not up to it and with severer ME it is even worse and with payback.

 

[Hutan]

ME/CFS appears to stand for myalgic encephalomyelitis/chronic fatigue syndrome but in an important sense it stands for neither. It is a newer concept, differing from both.

I'd add something like 'of the two components contributing to the acronym' to the end of the first sentence. It's just, for readers who don't think about ME/CFS and ME and CFS every day, it might not be immediately clear what the 'neither' refers to. Noting that there are two components helps to make clear what the 'both' in the second sentence is referring to.

The ME/CFS acronym, rather than trying to find perfect words, reflects a desire for a pragmatic clinical term that recognises, but also transcends, both historical medical views and the perceptions of people with ME/CFS who, importantly, have made major contributions to research and the level of scientific rigour. It signifies not only what we have moved on from, but also that we have moved on.

I'm not sure about 'the perceptions of people with ME/CFS' here. I don't think the perceptions of people with ME/CFS have had much to do with what the disease was named, including the ME name. I guess over the years many people with ME/CFS have been keen on the name of ME for various reasons, including that the only alternative was the trivialising 'Chronic Fatigue Syndrome'. The compliment to people with ME/CFS for their contributions to research seems shoehorned into a sentence that also seems to apportion some blame for the name myalgic encephalomyelitis to the faulty perceptions of people with ME/CFS. I'd prefer to see just something like
"The ME/CFS acronym, rather than trying to find perfect words, reflects a desire for a pragmatic clinical term that recognises but also transcends the historical medical views that we have moved on from."

 

[Hutan]

@Hutan Just for myself. I remember when I was at my sickest I was too sick to talk or sit for long. I was very distressed that someone would make me do things that would make my terrible situation worse. The less involved the better it was for me.

If anyone remembers having to go to A@E in a weak sick state for something other than ME, you will remember how hard it was when you are not left alone, instead you are having to answer the same questions over and over to different hospital staff. You just want to be left alone because you are not up to it and with severer ME it is even worse and with payback.

Thanks AliceLily. I agree that we don't want a troupe of people lining up to provide their professional expertise regardless of whether it is wanted or needed. A core team could be just a consultant and a specialist nurse.

It's just that I want a person with ME/CFS who is having a really hard time emotionally to have the same rights as a person with MS to get access to someone with specific expertise in helping people with a debilitating disease talk through the issues and find ways to cope. And, if I was the carer of someone completely bedbound and unable to sit up, I think I would appreciate advice specific to severe ME/CFS on how to prevent bed sores and deep vein thrombosis and muscle contractures. Maybe all that can be delivered by a specialist nurse with some good pamphlets, but maybe some more specific practical help might also be useful. I'd be interested to know more about what people with severe ME/CFS have found useful to prevent bad consequences from prolonged immobility - I'll set up a separate thread if we don't already have one.

Here: Severe ME/CFS: preventing the physical consequences of prolonged immobility

 

[SNT Gatchaman]

I'm not sure about 'the perceptions of people with ME/CFS' here

If you do want to keep a reference to the contributions of pwME, how about "the insights of people with ME/CFS..."?

Spoiler: Sidenote jibber-jabber

I'd prefer to see just something like
"The ME/CFS acronym, rather than trying to find perfect words, reflects a desire for a pragmatic clinical term that recognises but also transcends the historical medical views that we have moved on from."

"... from which on we have moved" ("Ending a sentence with a preposition is something up with which we will not put." -- not Churchill)

 

[Sasha]

I'm not sure about 'the perceptions of people with ME/CFS' here. I don't think the perceptions of people with ME/CFS have had much to do with what the disease was named, including the ME name. I guess over the years many people with ME/CFS have been keen on the name of ME for various reasons, including that the only alternative was the trivialising 'Chronic Fatigue Syndrome'.

I agree with this. I wonder if an alternative phrasing could be something like:

The ME/CFS acronym, rather than trying to find perfect words, reflects a desire for a pragmatic clinical term that recognises, but also transcends, historical medical views that the illness is mainly one of fatigue, and the desire of people with ME/CFS not to suffer the burden of a trivialising name for their devastating disease. It signifies not only what we have moved on from, but also that we have moved on.​

 

[Peter T]

The arguments over what to call our condition has taken up a lot of energy and also been a source of splits and acrimony within the patient community. I see agreement on ME/CFS as a placeholder name that also acknowledges what we don’t know as pragmatic solution.

 

[Jonathan Edwards]

she died because the team involved in caring for her refused to escalate to more intensive artificial nutritional interventions,

I think that that is only half of the story. Maeve was triaged into a place where nobody would help her. I think there is an important contrast with Bob, who recovered from a period of starvation as a psychiatric inpatient. It seems that he then made a decision he could not go on, but he did not starve. I don't know all the details but I think it may be easy to oversimplify the series of unfortunate steps that were involved.

 

[Jonathan Edwards]

You would know far better than I but perhaps some of those inclusions, and the holistic-multidisciplinary stuff, were necessary to get it across the line. A guideline that both Jo Daniels and Willie Weir both signed up to was one hell of an achievement.

I agree with the latter. And the multidisciplinary guff may have been a useful sop to prevent an outright revolt prior to signing (instead of a mini-revolt afterwards). But nobody would have revolted if it had been pointed out that 'complex multi system' was not based on any evidence. As long as it was agreed that GET and CBT had no evidence base Willie and Charles would have been grateful I think. It was just easy to leave it in because it was no further skin off the therapists noses.

We discussed what on earth would happen if GET and CBT were actually de-approved, way back in 2017-19, and whether having no service was worse than a bad service. I see that all coming home to roost now. Things have got complicated with Government Strategies and micro clots and all sorts but all in all I suspect that the removal of GET and CBT stands as a major achievement and the rest is part of politically driven shifts in a collapsing health service that would have happened much like that anyway. The biggest issue for me remains the drive for more primary care based medicine when what we need is the opposite.

 

[Tilly]

I think OI is often used as a more specific term for not being able to tolerate being upright or even half upright. What I am suggesting is that this may be the sharp end of a more general set of symptoms that make people seek relief in lying flat at least some of the time during bad patches. I don't claim that everybody even feels that but my sense is that this has something to do with what is different about ME/CFS.

I know that Alastair Miller has been criticised for his views on causation and treatments and what he says justifies that criticism. However, in his 2015 YouTube video he describes the clinical pattern of ME/CFS in almost exactly the same way as Amok Bansal has and I have here. As I say later, there is still room for getting the description clearer but I sense that physicians who talk to people with ME/CFS over a long period tend to get this same picture.

Suggestions for a better title are welcome.



It is an online journal set up by a UCL staff member with also Italian input. I use it partly because I think it is the way we should publish - with no kudos for going through hoops therefore no point in wasting energy on writing hack stuff. The open, signed, peer review system is excellent and allows good dialogue. Papers on Qeios will get attention if they are worth reading. Nobody really cares where something is published if they think it is interesting. I notify relevant people about these papers going up and I have had some comments indicating that word has got through to physicians. And yes, the gatekeepers at places like BMJ are to be avoided at all costs.

I agree with what you say about Alasteir Miller YouTube 2015.

I'm also glad that you use the term ME/cfs for the reasons you point out. I think that the ME community need to understand the problems from a clinical point of view but the trust lost is hard to gain back. The other issue is how explanations, words and concepts have been turned on them. There needs to be a lot of thought into meaning?

OI is also good and the fluctuations in PEM makes HR and BP bounce all over the place and we do need to start to home in on symptoms. How do we look for that are common to collate data from to show a clear picture. Would visible app help here? I know that has nothing to do with this but is a question that needs to be asked?

I have found "time with feet on the floor" a good indicator and gets greater understanding from laypeople such as education for Education Health Care plans and PIP assessments. Everyone can understand not being able to lift your head off the pillow to ability to sit up and then to stand. It can take a couple of hours for those with ME to stand in the morning and is something I have had not had to argue about from CEOs in health, care and education. Also explaining that reading a book impacts ability to sit upright, this is unique to those with PEM?

The name is the problem for all of us. Each profession looks at it differently and the community are rightly very guarded. I wished we could have a more appropriate name but like you have pointed out nothing fits with what we witness or experience and PEM is at the centre of our understanding.

Hope some of this helps. It is something we should all read because there are points in here that directly shows us how clinicians think about conditions and how they follow a process of thinking that we as laypersons do not. This is for many reasons but mostly looking is very different to dealing with and it is the connection/communication/respect between the two that is important going forward?

 

[Jonathan Edwards]

Very hard to see how this was a genuine concern of his, he's been absurdly wrong most of his career but he is not delusional.

He is not delusional. He has an acute political intelligence. But I think this was a very real concern for fairly obvious reasons. His agenda was to maintain the claim that highly trained psychotherapists and psychiatrists knew what they were talking about and were therefore essential and needed to be well paid. If the treatment could be delivered by someone with six weeks 'training' that would undercut his argument completely.

 

[Jonathan Edwards]

However I don't think Maeve or her family thought she had a progressive and inevitably fatal neurological disease.

Strictly speaking I think that is true but there is a step that is not being considered in all this. I have spoken personally with Maeve's mother and I think things are more complicated. I would prefer not to be more explicit. I think there were different views amongst physicians and I think the confusion contributed.

And I see this as something that may recur, particularly if we have 'educational materials' passed back and forth between clinicians that perpetuate these very confusions. Hence the article.

 

[Jonathan Edwards]

But, my understanding is that someone who is bedbound could well benefit from a well-trained physiotherapist who can help minimise the risk of medical complications of immobility.

I address this directly. The only thing that I can think of is prevention of plantar contractures from lying in bed with bedclothes on. I had a sense that J T-B may have had a problem of that sort when she got back on her feet. But a competent nurse can handle that perfectly well. ITU nurses are trained to understand all the complications of immobility. Good nurses can be trained to do all sorts of things beyond bed pans and drug rounds! Including, as I point out, highly technical things like chemotherapy infusions.

It is actually quite an interesting reflection of the restrictive practices philosophy that underlies the 'multidisciplinary team' ethos. The idea is to justify as many people's jobs as possible. Yet junior doctors get taught to do almost all the things the other professions do. I used to provide nursing care, advise on ADL needs etc etc. I didn't do much physio or psychology because, as I say, my impression is that there is precious little with an evidence base to know about.

In short nobody ever needed a physio as well as a nurse. The exceptions to that are maybe stroke rehab and juvenile chronic arthritis management where restoring mobility is a highly complex process. There is probably pretty little evidence base there either but it takes up so much time there is justification for another pair of hands.

 

[Jonathan Edwards]

or counsellor who has a lot of insight into the impact of debilitating chronic conditions and how to best cope

I know a nurse who has very deep insight into the impact of ME/CFS. Quite a lot of counsellors have a nursing training. I strongly suspect that, free of psychological mumbo jumbo they are much more likely to do good than psychologists.

Psychology is a very broad field, and there are certainly some branches of it that involve critical thinking and attention to evidence, even if the aim of some of that thinking is only to sell more of something.

There are some critical thinkers like Brian Hughes, yes, but Brian would be the first to point out how uncritical so much of clinical psychology is. Clearly I am talking in context and I stick to me claim that these people have shown no understanding of either the illness or how to manage it.