rvallee
Senior Member (Voting Rights)
And most have already done most of that before seeing a physician anyway, because duh.
UK BACME ME/CFS Guide to Therapy 2025
- Thread starter Nightsong
- Start date
the irony is that the very paper they've picked states, which in some ways if extrapolated correctly is close to our experience, that fundamentally our disability is huge because the things that inside the body for others can either regulate and/or be constantly rebalancing in order to meet the changing demands people will have as temperature changes or they move, speak, get tired, actually aren't controllable in that way. I say this not because it is scientifically right.
But because the worst part isn't just the debility, it is that how much it can be managed into the uncontrollables in life and expectations of reliability and predictability. We don't know - I suspect any of us - when we can shower next, just an approx equation guessing at worse days due to other obligations and a blind hope that 'one moment we will have a feel good hour' and then that we haven't misread that even when it comes and have to get out half way thru.
Our body doesn't react as it should to anything, but also doesn't do that predictably other than the biggest weird thing which is that the things that are reliable for well people apparently of 'getting fitter by doing more, getting less sensitive by exposure' definitely don't work. In fact it makes it understandly even more topsy turvy. Why by their mindset in their model they think 'showing the body the shower every 2 days' will 'get it in line' to make it behave more in homeostasis when it does.. what..because it will feel awful but then suddenly remember for next time not to collapse and feel awful with no strenght and you have to lie on the floor?
The fundamental mis-read most have, who don't have experience for many years, just blind hope and assumption based on them having a working body that comes across mishaps and blips of things like bad flu or the time that injury took ages to heal or the bad winter they caught everything going is that we all think it finally 'get right if we do/find the right things' and it won't. And guess what - that's when we know we aren't speaking to someone with chronic fatigue or post-viral might recover etc.
@Keela Too put her finger on it with describing ME/CFS as something like 'inability to increase fitness', and I'm hoping someone can come up with an equivalent term here for this tranposition re: 'don't shake it off by trying all these obvious'. And this idea that in the mean time 'behaving a certain way' is the best way to get done what we have to as priorities whilst minimising how unwell we are in response and that is based on rubbish over experience needs to end.
It is like someone having one of those geo-toys that is designed to keep spinning forever and diagnosing the issue as that and then assuming the fix is 'we just haven't tweaked what I'm doing to do it slow enough, or 'surprise enough' or with the wrong hand etc as if it is a normal thing set to respond to gravity etc yet...' and worse than that they are only willing to try one thing, one way because of preferred 'shoulds' based on ablism of 'if only disabled people kept better habits and went to bed earlier they'd sleep better'.... whatever the cause. 'because good people keep good hours'.
So even when people who their first thought was similar judgementalism of themselves tell them they tried that to death first and found they were better 'going with it' on rest/sleep... and then finally realise that whatever they've exerted they tend to need that amount of rest for etc it just creates a don't compute issue. Which leads to explanations a,b,c - which are far from flattering to the pwme - to 'make it make sense again'.
And those suggestions to justify that 'gap' in their willingness to see or accept reality of using what are slurs and tropes they think pretending to cloak them in 'but its sad and we just want to help their madness' makes it acceptable rather than qudrupling the harm. It's the opposite of a problem-solving or even pragmatic mindset to the actual situation as it is, that helpful support would look like. Its a reframing it to make it invisible and invalidate it to make them feel more comfortable
Much of this paper is just an example of someone in denial writing 'but it should work .... see I've found this one paper from before all the research was analysed and confirmed there is no confirmed science and if I pick the odd line out of it and stick them together then 'it' agrees that what we keep doing must not be now nonsensical....see'.
I'm sure there was lots of uttering of 'what's wrong with these people?' with its ambiguous meaning, but where I have placed the emphasis is where I imagine it is from them when we have to open our mouths in a non-coercive situation and be honest or can't avoid our body, as evidence, betraying the truth even though saying the truth makes us unsafe given the power/opportunity such peole have and that not being 'the answer they want' (which is 'I'm so much better from doing this').
The sad irony is that that is the exact question they should be asking: 'what is wrong with these people?' just with an utterly different attitude and mind. To want to actually meet us and find out who we are for the first time because they realised we did big interesting things or can think very cleverly and sensibly thank you and before our lives were intimately destroyed by this (the bps hostile environment and trope spreading), on top of the awful destruction of the illness, had an important part we could play in the world.
Some of us were/are them with a terrible illness that affects us physically on top. We don't need our voices silenced thanks. Or our minds assumed to have demented our bodies into illness. Whatever paper they've read wrongly to justify that. And instead to want to be part of an effort to say how important proper, good biomedical research is and in the mean time for them to get behind us and work out how they can support what we say would help instead of all this charade.
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Indeed
And they can't actually claim good intentions as these people now have foreseeability that doing the same thing that didn't help and probably harmed a lot of people will.....probably not help, probably harm lots, but also waste a lot of money and slur the patient's reputations and ability to even have their other rights of living in reality or accessing healthcare they need
I know we might want to use the excuse of 'just therapists' and 'have to follow the protocol' being somehow the difference vs other professions. But as this is now BACME trying to be the protocol-makers they are placing themselves in a different position altogether from what they perhaps sat under whilst telling themselves this, making it to me even more clear-cut that this isn't discussions about those 'doing their best given the situation and what they are allowed to do/tricky situation for all' in the same way.
There are so many possible analogies here it could be a thread in itself, but then fall short in the 'professional' and 'responsibility' bit that means even before and certainly now there should have been a sense of needing to make sure those feedback loops on harm being heard were part of that.
they are not all fools and are not so imcompetent that they don't know that claiming something that doesn't fix anyone does fix a group of people and inferring a few 'maybe they've got a few personality things' on the side is basically taking ill people who their treatment at best won't fix but will waste the efforts of they need for trying to not lose their job and life at the same time as making all around them assume they stay ill due to 'not making the effort' and then 'complaining it doesn't work because they have strange views and are a bit weird and mad' thanks to the priming to see them as mad for when the 'therapy' fails to work.
To repeat, it's not the 90s and it's not even 2011, and it's not even 2018 when PACE had been debunked as having data that had been 'problematic' to be polite about things like outcome-switching to the extreme extent that happened. It's 4yrs after the 4yr process of the Nice guideline during which all of their precious therapist-delivered research was analysed for quality and made clear to them, and other research done by that date was also made clear to be analysed to check for things like making sure it was actually people who had PEM, statistical power to extrapolate it even if it did, and bias and the like. And the parliamentary debates, as well as many other areas, made clear just how ill some were made by this and yet it wasn't logged.
And they haven't changed their systems to be concerned about that not being logged. But they sure heard and saw this harm because they replied with things like 'you are being rude by critiquing us by presenting the consequences on your body to others' rather than showing concern.
So I don't know what they think they mean if they ever did utter the word 'intentions' and what they understand by foreseeability vs callous indifference but no it isn't good intentions if you don't really intend to make sure what you are doing again isn't going to just be useless and cause harm (in many difference multidisciplinary ways) in the same way.
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Agreed, that's what I read too.
And it is a bit ripe - even if the document isn't the place for it - to be trying that one on whilst not underlining and being on of the leading forces pushing for funding and acceleration of research that will lead to actual causes and potential treatments being found that would provide people to be more well again. Instead of 'rehabbing ill people without treatment first'
but that's a bit awks as it might highlight the 'untreated' and the logicalness of 'rehabbing them' ..?