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.
Last edited:
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.
Last edited:
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' ..?
dratalanta
Senior Member (Voting Rights)
Thank you Trish - you’re amazing.
BACME have hit on a politically persuasive phrasing here which may cause immense harm.
The WHO quote says patients have a right to “A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and self-determination.”
Where is the evidence that “pacing up” is such a process? All the evidence we have is that it doesn’t work and may cause (at least) psychological harm - the opposite of increasing “psychological… functional levels”.
The purpose of pacing up seems to be to create unevidenced and unrealistic expectations of physical improvement, and when these are not achieved to attribute this to patient failure to comply, creating psychological vulnerability and dependence on the therapist. If rehabbers did that with paraplegics, they’d be struck off.
On the WHO definition, pacing fits the definition of rehab better than pacing up. To “attain independence” for us is not about snake oil but about societal support to enjoy what quality of life we can, whether that is a motorised wheelchair, carer hours or adjustments by an employer.
The WHO quote goes on to say that rehab should work with patients to “address underlying health conditions and their symptoms, modifying their environment to better suit their needs, using assistive products, educating to strengthen self-management, and adapting tasks so that they can be performed more safely and independently”.
This is not a bad description of what should go on in clinics:
- doctor-led differential diagnosis to eliminate alternative causes and identify comorbidities, esp. treatable ones
- prescribing for symptom relief
- identifying required changes and support at home (and work/school if applicable) and providing referrals / evidence letters as required
- prescribing of assistive products
- educating in the best self-management available i.e. pacing
- discussing the routine to identify what can be adapted to minimise energy demands
Our best argument here is not that rehab doesn’t apply to us, it’s that BACME don’t know how to do rehab. They are implying rehab will lead to increased physical capacity and may be curative, when the evidence shows it does not and is not. This is unethical and psychologically harmful. Instead rehab should be adaptive and focused on not provoking PEM. BACME attribute PEM to patient behaviour (boom and bust) when proper rehab would focus on environmental causes (lack of help with ADLs, unadapted home) and help patients to obtain social support.
Imagine inpatient care at a rehab hospital set up for our needs - private rooms with sound and light blocked out, accessible bathroom crawling distance from the bed, carers to assist with personal care as requested, every mobility aid available, doctor support to manage symptoms. Patients could stabilise and when well enough could be supported by staff and family in figuring out how to replicate that at home. It will never happen, but thinking about it shows it’s not the idea of rehab that’s the problem; the problem is the dismal fake “rehab” being offered by the medical system.
Parents and loved ones are forced to figure this out for themselves. They are the rehab experts, not BACME.
Perhaps this is a reference to places that have no " specialists" . Where this model has not been made available .
Scotland has no specialists . If this forms part of the delivery plan response , it's likely that it will become the embedded model .
I've tried to flag this up , people just can't seem to see the juggernaut that's heading for us.
JellyBabyKid
Senior Member (Voting Rights)
It does make me wonder what happens if anyone says "DecodeME results" to them.
I am quite sure their hypothesis/model will account for it though, in some gymnastic way. It's weird how these things always seem to, even before the research comes out
Thank you, that's helpful.
Jonathan Edwards
Senior Member (Voting Rights)
I agree that this sounds good practice. But it is not a definition of rehabilitation. These are things that apply to all good medicine. So this is not a reason for using the term rehabilitation. Rehabilitation is normally defined as a process of optimising recovery from some injurious episode. Looking aft RA for decades is not rehabilitation. Nor is looking after MS, but optimising recovery after a recent relapse of MS is, because it involves a recent episode from which some degree of recovery is expected.
MinIreland
Senior Member (Voting Rights)
I agree that they're not the experts they claim to be and that what and how they're saying things is problematic (to say the least).
Maybe I should have said that the intent is therapy. You're right that intent doesn't matter (that's why I said earlier 'the road to hell is paved with good intentions."
Kitty
Senior Member (Voting Rights)
No, it's a reasonable definition of occupational therapy. The goals there seem to be much broader: keeping people safe and making their environments accessible, so they can live as best as they can in the way they want.
Crucially, there's no inbuilt expectation of improvement. Some people will improve, some will stay about the same, some will get worse.
Sasha
Senior Member (Voting Rights)
This is a crucial statement and it's amazing that it needs to be pointed out. My impression is that people have reconceptualised ME/CFS as a temporary state simply in order to be able to apply rehabilitation to it.
Kitty
Senior Member (Voting Rights)
Yep, nailed it.
MrMagoo
Senior Member (Voting Rights)
Well AFAIK food and water are human rights, if anything that’s the human right denied to Very Severe patients and causes their death. If they're so concerned about human rights. Which they aren’t.
Robert 1973
Senior Member (Voting Rights)
Yes. If I ever recover from my ME/CFS I might need some rehabilitation having spent more than 30 years either in bed or in a wheelchair. Sometimes that hope is all that keeps me going but unless there is a significant improvement in my underlying condition, I can’t be rehabilitated – only helped to managed within the confines of my disability.
After 28 years of severe disability I moved into wheelchair adapted accommodation. I use a powered and manual wheelchairs indoors and out. I have a remote door system, WiFi controlled heating, electric blinds, a wet room, pull down cupboards and wheelchair access to a patio area. All these adaption make a big difference to the quality of my life. That is the sort of help and advice I needed but never got.
Instead I was refused an NHS wheelchair and other mobility aids because I was told that my condition was not permanent. CBT and taught coping strategies were based on the assumption that I would recover. Apart from a couple of kind doctors working outside the system, there were no services to support me when it became increasing apparent that I was unlikely to live anything approaching a normal life again.
My parents were told not to buy me a stairlift because it might disincentivise me from walking up and down the stairs. In hospital I had to urinate into a sink because I couldn’t get the the toilet and the nurses refused to empty my urine bottle and commode. At home I used to urinate into a bottle and crawl on my hands and knees to get to the bathroom once a day until I finally bought a wheelchair. On one occasion it was too much and I had to defecate into the bin.
These are the sort of struggles and indignities that services should be helping patients to navigate and avoid. Instead they just make it worse.
I know most people here understand all this and many have had similar experiences, but sometimes it’s good to spell it out. Maybe there are some BACME people reading this thread who will take heed.
Suffolkres
Senior Member (Voting Rights)
This BACME Guide (and liaison between BACME MEA and others like Eleros and Tyson) biggest problem and achiles heel, is the lack of co production, surely?
This needs also raising as S4ME have tried to 'engage' inform and provide constructive comment and concerns.
Not even Engagement has been achieved.
Coproduction is mandated in the legislation.
Service Users, Carer. Lived Experience is mandated.
We are having to formulate words to this effect currently, about our situation with failure of co production in Suffolk.
It will be useful when finalised (today) to share with you Trish privately, as it is part of a formal complaints procedure against this manifest failure, and will be escalated through higher level channels.
I will put together our background research on this legislative approach. We did this in 2017 with the NICE Scoping Engagement exercises and further work.
MELN has a present here
Let me know if that would be helpful
MEA have gone rogue....
