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.