Evidence of GET (and exercise generally) being helpful or harmful in ME/CFS and related conditions

Thanks! I believe I’m through the worst, and it will improve even more once I’m accepted for permanent disability benefits. It will probably take a year or two. I’m in no rush, the finances are pretty much the same so it doesn’t really make much of a difference.

 

Exercise is untested, they should test it. Properly.

 

But that ‘association’ is generally very cart before the horse to a jaw-dropping extent I can’t believe they get away with the mis -citing (it as a ‘less movement —> more ill’ suggestion , not other way round) nevermind the actual seeming belief they think it is real what they are saying

ie how did things get so bad over the last few decades people are able to say such stuff like the ‘preventative’ nonsense we are starting to get from bps. There’s no method in the world, but certainly not theirs, that can brazenly claim that sort of thing and the number of confounders snd causality issue means I’m still thrown when people say it because failing to accurately differentiate between something eg being a correlation vs cause use to be a societal signal of ignorance/foolishness/not knowing or caring how science works ie being unserious on that follow-thru and just a sales person

 

It also seems to be partly about how they’ve been allowed to lead and set up their lives and working lives

when we were describing eg what BACME is in another thread then it was pointed out that BACME aren’t ‘specialists’ in our illness (or indeed what is need is the next sub-areas up ie people able to differentiate and understand other medical possibilities and differential or for morbid issues and what helps those for insight) but pushers of one specific product (to one specific audience, but of course they expand that) - a ‘therapy’ which seems to be a term tgat has lost any connection with being health-giving and not harmful having to be its priority

and worse they are selling an orthodoxy against us /are not open-minded to ‘what works of helps the illness’

we have the same blinkered issue here where ‘exercise advocates’ tend to be interested in only seeing what they want to see, and not really interested in ill people to a true extent - just when some can be used temporarily if for that time their trajectory ou eg goes the right way and they can be held up as ‘examples of good behaviour paying off’ .

They certainly aren’t holding the hands of cancer patients who went to their group once as they die, or going to see those who do get worse because they care. Which is one thing. And we excuse many in society for being too whatever for doing that (too hard, too busy, not their job etc) . But what is inexcusable is letting that bad behaviour distort one’s world view by pretending those they stop hanging around with then ‘don’t exist’

just because it’s more convenient for them to close their eyes to he reality doesn’t give those in a supposed profession (which that thread us correct, anyone like BACME is not a profession as long as it is biased towards only certain worldviews of people and approaches , rather than than being truly interested in understanding the illness and open-minded to outcomes from different things, ie prepared to offer ‘what works’ not merely ‘what they sell’) a free pass on what truth or science is, where if you can refuse to see or acknowledge what is inconvenient to you then you can lobby fir it not existing

they don’t seem to really be self-interrogating to realise what unpleasant assumptions on individuals, particularly ill /disabled individuals, ie bigotry, had to be made up in one’s head and start to be believed .

But the ‘brings it on themselves by acting ill’ as a cover for innate contempt for ill people , not their self-delusion of ‘expertise in sn illness and supporting those with it’ seems to be that switch-and-bait crux point where their lens of what they are able to see is distorted. In other workplaces and the recent history ut was called discrimination and was something that was seen as an issue to be actively tackled in society at large (nevermind those who work with said people) not a belief system to be propagandised by/to eg those in a health service in particular

the moment those with an interest in exercise began to stop putting safety and the potential for harms and caution at the top of their job description, along with a mission to be as methodologically accurate as they can in what is causation vs just associations (ie the laziness of crap pseudo psychology and other ‘therapy areas’) was the moment they stopped being either science or medicine but just sales people trying to sell indirectly ie tell those around disabled people what they [ill people] should be doing in order to coerce said subjects into their offering.

It’s like selling to parents a product that will ‘make their kids better or happier’ whilst also telling all involved to ‘not listen to what the kids say as they don’t know what happy is/is good for them’. Eventually the whole thing becomes pretty damn toxic and about how both (parents snd hawkers) are being let down by kids insisting on ‘not producing the results expected/convenient to them’ vs the kids who will play act to the adults because they’ve heard that message that mummy and the professionals need that psychological boost of seeing that x is a great thing for them, and little Johnny is ‘doing well’’.

I just find the whole thing so frighteningly sickening when you think about - the last thing anyone in the whole circle is caring about is the object at hand snd their well-being because it’s all about the sales person focusing on the more superficially meetable needs of the person with the purse strings/power over them


There are a few out there who seem to be genuine exercise scientists or of that mind, and I will give them the respect they are due as long as their actions and intentions and thinking keep meeting that definition . But it isn’t either kind or respectful to them to not differentiate out the ones who aren’t that but are trying to claim that moniker whilst actually only interested in selling what they do and don’t care about those for whom it doesn’t work or even harms

 

That’s interesting, but inevitably biased since people who did well on it are far less likely to find the survey. What were the comparison figures for CBT/other stuff? A comparison with other treatments is probably more useful.

 

Thanks. If my maths is right, 20% said they improved with CBT and physical function. So overall, it’s modestly unhelpful, compared with a GET, which is very unhelpful/harmful. and that’s consistent with other surveys – at least according to my rather unreliable memory.