Enduring symptoms: A call to immediate action, 2025, Barnes

[Trish]

Can you be more specific. I had a look through. There seems to be a lack of grasp of the problem but not sure what more?

The document seems to repeat the problem I see on the MEA website. Lots of stuff about what they are doing with ICB's in terms of meetings and advising, but no information about what they are advising the ICB's to provide except vaguely the NICE guidelines. Which could be just more BPS BACME clinics.

 

[Nightsong]

Can you be more specific. I had a look through. There seems to be a lack of grasp of the problem but not sure what more?

What struck me first is where they talk about the "Primary Fatigue Service" in Wales and how regrettable it was that this clinic had been suspended. What that clinic provided was group-based nonsense along BACME lines and also recommended "brain retraining". I can't find their webpage on the Internet Archive but WAMES has a copy of some of it here (link). It's precisely the kind of thing that needs to be shut down, not advocated for.

They talk about advocating in the context of LC for providing "additional funding to existing services or to now look at integrating services". The LC clinics are run along rehabilitationist lines; again, precisely what we don't need.

There is no criticism whatsoever of what the clinics are actually doing in practice.

It's also notable that the charities seem to consider themselves to be arbiters of the NICE guideline, rather than advocating for what patients actually want & need. The NHS is supposedly obliged to offer NICE congruent services but it certainly is not binding on the charities and there is considerable leeway within its bounds, as we have seen. The charities should be using the guideline as a cudgel where it is in patients' interests to do so but are in no way obliged to embrace its many flaws & compromises.

I think you take the BACME dysregulation document a bit too literally. It's constructed solely to provide a rationale for them to continue exactly what they have been doing that will sound acceptable to the average patient. These people have no serious knowledge of physiology as is all too apparent; the mechanistic parts read like a student physio set loose on PubMed.

 

[rvallee]

Realism or pragmatism seems to be the default defence for the associations, the same is seen in Norway.

Nothing in this model is realistic, though, so it's closer to nihilism than realism. Or if there is any sort of connection to be made to realism, it's closer to realpolitik, which is the kind of 'realism' applied to geopolitics that mostly consists of "my army is much stronger than yours so what are you going to do about it?" And of course pragmatism doesn't apply here because nothing in this model works either. Pragmatism may not bother with theory but it still has to actually work for it to be pragmatic. Incompetence can't be pragmatic, and this whole approach is completely incompetent.

Defeatism is more like it. They're accepting defeat, which is the opposite of what we both need and want.

 

[Utsikt]

So the commentator is suggesting that, however our symptoms are described, we shouldn't point out the suffering, isolation and lack of medical support. Makes no sense to me.

The point is that Cheston labeled what we’re experiencing as «enduring symptoms», which is a synonym for psychosomatic.

There is simply no excuse for doing that.

 

[Jonathan Edwards]

I think you take the BACME dysregulation document a bit too literally. It's constructed solely to provide a rationale for them to continue exactly what they have been doing that will sound acceptable to the average patient. These people have no serious knowledge of physiology as is all too apparent; the mechanistic parts read like a student physio set loose on PubMed.

Don't worry, there is no chance of my underestimating the hypocrisy - I make that clear in my draft response to BACME.

I am trying to disentangle the disingenuousness of BACME from what I think is genuine naivety on the part of the advocacy groups. But I think we have the same analysis of the MEA transcript..