BACME position paper on the management of ME/CFS, 2020, updated 2022 - discussion thread

This is why some professionals working with ME/CFS are negative about forums and support groups such as ourselves as we enable patient challenging their unevidenced orthodoxies.

[deleted redundant clause]

 

That was fun but according to Wikipedia, the first letter is wrong (I initially thought you were about to spell out a very rude word indeed).

 

It doesn’t get more S4ME than this comment

 

Well spotted. Wikipedia's flag display was unclear and I pasted the wrong one without thinking.

 

Yes, the thought police here are very polite but very rigorous.

 

Not sure I've seen the 2022 version before. From a quick look:

(sigh)

This is just a chain of buzzwords that might as well have been produced by ChatGPT.

This sounds like they're in search of an explanation that will justify them continuing to do what they've been doing all along.

This is, by contrast, very carefully worded. Deconditioning was always a part of the cognitive-behavioural model, but it was never considered a "primary cause" but a perpetuating factor. They do not disavow the cognitive-behavioural model.

The evidence, where it does exist, is mainly from trials of PACE-style CBT & GET, and it's clear from trial data that those interventions don't really work. What evidence is there for more nebulous rehabilitative approaches? And "optimise the potential for recovery" implies that they believe there is no underlying disease process. In truth we have no idea what may or may not alter the potential for recovery, if anything.

Presumably, then, they have evidence of these biological processes being altered favourably by their flexible, person-specific programmes.

This isn't even true. Who says to highly deconditioned patients who have, for instance, spent a long time in an ICU that they are going to be treated inflexibly and that they must increase their activity regardless of how they're responding to physiotherapy? They've set up a strawman, and are busy knocking it down.

There is absolutely no-one who has a "good understanding of the biological aspects of ME/CFS". BACME should not pretend that they do.

 

I made a new one specially for them.

 

Jesus that’s bright why is it so big?

 

Like any “stakeholder” patient groups can be there for window dressing and have no real input, or can be useful idiots. A selection of 5-20 patients aren’t a synecdoche and we need to stop allowing people to speak about them as if they are.
BACME involved patients in their terrible chat-gpt document. So what? They also involved a number of medical professionals, it still doesn’t make any sense. They're the ones who need to increase their understanding, not lay people who are also ill.