The Concept 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.

 

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.

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.

 

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.

 

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.

 

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.)

 

Ok, fair points about "conceptualising".

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

 

@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.

 

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

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

 

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.​

 

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.

 

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.

 

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.

 

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?

 

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.

 

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.

 

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.

 

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.

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.