UK BACME ME/CFS Guide to Therapy 2025
- Thread starter Nightsong
- Start date
I am so outraged by this, particularly the car-driving story. You are correct on highlighting the coercive power dynamics issue going on. It is incredibly inappropriate and needs to be tackled because it certainly is open to and being used even if those doing so are inadvertent to realising that's what they are doing.
It feels like - and the person who delivered the therapy is the one I'm directing this at, along with the legal foreseeability thing - what is being delivered is enough combined, dangerous psychological gaslighting, ostracisation and invalidation alongside physically harming people that it should be deemed something that could cause harm that cumulates to become a threat to life (its concerning how I bet they think 'it's just a bit of x' when they really don't get the illness and how surrounding them with this causes really serious ongoing long-term impacts that accumulate to that level). Definitely significant increase in disability and misery for the rest of their lives so destruction of their existence and life. And not a slight one, but just what that sort of programme 'does' unless something else protects people from it ie they survive despite with just severe injuries from it, where people are lucky if they have the sheer resilience and/or support system to survive it because on its own that person doing that and programming that into someone's brain and life and soul can only have those extreme harm consequences.
Plus of course to me this stuff is used as incitement too. It is clear misinformation that tends to be plastered in places that those who surround pwme and they rely on for understanding will read. They should have taken down the old stuff as soon as the new guideline came in but they chose to leave it up being harmful and have now written this - clearly for propagandic purposes of having others read it, and no it isn't normal stuff until you push it using the advertising rule of 7 so people hear it enough that what was common sense and kindness becomes manipulated to this.
And I'm fed up of having to pretend otherwise than that plain fact and play down what isn't play downable just because the same individuals are also horrible in calling plain, measured feedback catastrophisation - because of powers they should never have got near and still technically aren't due or licensed for and certainly are not acting responsibly (which is what being dismissive and rude and coercive to feedback is).
I can only conclude they think it is a game that they don't hear the feedback or are deluded to the point they need significant treatment and de and reprogramming themselves, which I knew they would need when the guideline change and do not understand why that was not the first thing that happened. They are victims of their own brainwashing too.
And yes this needs to be underlined because I can sense we are back at that 'busy time' again due to 10yr plans being implemented with restructures for everything and people inside the system kidding themselves to ease the cognitive dissonance that 'you can turn it down' and that it isn't harmful, nevermind as toxic and all about harm and misinformation as it is.
That word 'therapy' here by the way I think is key. It obviously isn't. There are issues with that term being abused in problems like were shown in 'the Program' on netflix in other contexts: https://www.s4me.info/threads/netflix-documentary-the-program-about-cbt.44965/
Just because these things claim to be coercing people and trapping them until they are forced to think differently does not mean that the content is helpful or it can be called 'therapy'. eg radicalisation or interrogation techniques or other things done in 60s psych experiments weren't and aren't 'therapy'. And it is very important that harmful propaganda and misinformation and harming others isn't disguised to be funded by taxpayers by this con of not requiring that term to only be used when something is checked as such. I mean conversion courses for homosexuality that are known to cause harm shouldn't have therapy anywhere near them as a term but I have no idea if they've banned it being used there?
I think we need to start calling out that just because some people are in situations where they were able to find ways to survive 'the system/environment' this designed doesn't mean that all aren't harmed by it and that isn't the outcome it is doing if there are no other shielding factors. I feel so sad that we don't tend to have as the norm/blueprint pwme who are more severe and/or have circumstances where they don't have financial or support systems that are fortunate but are trying to keep a roof over their head alone or with partners or family thinking like this and are noting what the outcomes are when there isn't someone to fish you out of a false mental health diagnosis (I think a lot are hidden under this, particularly as the deterioration gets worse which ends up hiding outcomes pretending it was 'mental health' rather than injury from 'treatment').
Sadly for all sorts of reasons those representing us tend to be in better positions and as we saw from Neil Riley's articles last year aren't keen to realise they are deciding things for others who don't have the options or environment that they do and speaking on treatment plans completely oblivious to the real gaps that need to be filled and damaging stuff that needs to be remedied because most can't ignore it.
This ideology is all-consuming in how it intends to influence people's options in life in the most catastrophic way given the illness needs rest. I imagine these factors play a part in all illnesses but if not being undermined as you try and make a tiny amount of health and energy stretch n is the main thing needed, and the treatment is misinformation not just some added extra then we need to be looking at the outcomes of those who can neither avoid the treatment nor buffer themselves against it and I dread to think.
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Utsikt
Senior Member (Voting Rights)
What is it called when a doctor is driving with the handbrake on and puts diesel in the petrol car, but keeps blaming the patient in the backseat for why they never get to where they want to go?
Thank you! I hope the same for you - I’m optimistic for the long term thanks to the people here.
Elara Grey
Established Member (Voting Rights)
Thanks for that chuckle!I wish I'd had that quip back at the time. Though it wouldn't have done me any good to say it. But that was certainly a good laugh reading it now.
Apparently it's called the BACME Guide to Therapy 2025. /S
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Elara Grey
Established Member (Voting Rights)
Unfortunately this, in my case, is one of the worst parts. Because every single service I need defers to or consults with the NHS ME/CFS Clinic about my care etc, and completely bow down to their misinformation. So I cannot get any services that will treat me with appropriate understanding or a willingness to listen to my explanation of ME/CFS and my needs. Whether it's dietetic input, speech and language, GP care, home care... All is guided by the nonsense put out by BACME.
I'm tearing my hair out.
I really heard echoes of my story in this and a lot of what you said.
That's exactly it. Suddenly it becomes my thinking and perspective that is the problem and they apply that "catastrophising" label VERY quickly.
Not just to feedback about their services (I haven't dared). But to anything I say about my life and not having the support I need or being subjected to other services' mistreatment.
Tempted to swing towards the delusions. Because they can hear the feedback but discount it as the patient having cognitive distortions. The pot calling the kettle black comes to mind.
Or something like that.
I really didn't mean to hijack the thread into my story though. I was really only trying to provide real-life illustrations of how the Guide to Therapy is implemented in practice.
Sly Saint
Senior Member (Voting Rights)
the paper Marks published:
https://www.qeios.com/read/FZ1Y68.2 published in May 2021
see also
me-pedia.org
https://www.qeios.com/read/FZ1Y68.2 published in May 2021
see also
Breakdown of homeostasis hypothesis
@InitialConditions
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MrMagoo
Senior Member (Voting Rights)
A caution - It could also be an argument for the support, in that it’s not harmful (and will keep the many “multidisciplinary” OTs and Rehab Professors in employment…the catch is there is no long term follow up, is there? (I assume not. There never is) so it’s basically unproven long-term.
I’m sure Ive moaned elsewhere about peer support and support groups. I got stalked at one. Illegal drug sharing at another. I will not engage in such, my data and info is not for sharing. Also I put in more than I got out, they asked me to lead one of them, sigh.
Utsikt
Senior Member (Voting Rights)
No it can’t, because adding the programme didn’t produce any benefit. So it’s all cost and no benefit.
We don’t do healthcare because it isn’t harmful. We do it because it’s effective.
If this is used to condone the programme, you’d also have to condone faith healing, acupuncture and eating carrots.
MrMagoo
Senior Member (Voting Rights)
The people who have jobs which depend on it will spin it
Utsikt
Senior Member (Voting Rights)
I keep coming back to how many ways this can cause harm.
There are the obvious ones with how pacing up might cause crashes and deterioration at worst, but I think it’s under-communicated that the appearance of there being potentially effective interventions can affect all aspects of a patient’s life. So this goes for the various associations and doctors as well. I’ve only scratched the surface.
They might be denied aids or benefits because their ME/CFS might be fixable.
The people around them might view them with more stigma.
They have to waste their very limited energy and time on things that won’t benefit them.
They will experience pressure to do things they shouldn’t.
They are denied the opportunity to have a authoritative alibi for not trying various interventions because there are nobody that speak out against it that will also be viewed as credible by carers/family.
Relationships with people close to them might suffer because the time with them is spent arguing about doing X or Y.
They might be robbed of their sense of autonomy and privacy by invasive questionnaires and logs that must be filled out about every aspect of their lives ane days.
There will be less capacity to dedicate towards getting the family through what’s a substantial life crisis. Relationships and families might be broken.
Patients might end up feeling more isolated or alone, more misunderstood and more mistrusted.
The patients will experience an internal conflict between their experience with their body and how they are told that it’s supposed to be.
They might be told they are ungrateful for not accepting well-intentioned help.
They might feel like they are responsible for their continued illness.
They might lose hope, not of recovering, but of being allowed to exist as an individual that’s severely ill.
————
The psychosocial consequences can be so severe, to the point of patients considering, attempting or completing suicide. It’s a cruel irony that it’s brought on by the people that claim to care the most about the patient’s psychosocial wellbeing.
There are the obvious ones with how pacing up might cause crashes and deterioration at worst, but I think it’s under-communicated that the appearance of there being potentially effective interventions can affect all aspects of a patient’s life. So this goes for the various associations and doctors as well. I’ve only scratched the surface.
They might be denied aids or benefits because their ME/CFS might be fixable.
The people around them might view them with more stigma.
They have to waste their very limited energy and time on things that won’t benefit them.
They will experience pressure to do things they shouldn’t.
They are denied the opportunity to have a authoritative alibi for not trying various interventions because there are nobody that speak out against it that will also be viewed as credible by carers/family.
Relationships with people close to them might suffer because the time with them is spent arguing about doing X or Y.
They might be robbed of their sense of autonomy and privacy by invasive questionnaires and logs that must be filled out about every aspect of their lives ane days.
There will be less capacity to dedicate towards getting the family through what’s a substantial life crisis. Relationships and families might be broken.
Patients might end up feeling more isolated or alone, more misunderstood and more mistrusted.
The patients will experience an internal conflict between their experience with their body and how they are told that it’s supposed to be.
They might be told they are ungrateful for not accepting well-intentioned help.
They might feel like they are responsible for their continued illness.
They might lose hope, not of recovering, but of being allowed to exist as an individual that’s severely ill.
————
The psychosocial consequences can be so severe, to the point of patients considering, attempting or completing suicide. It’s a cruel irony that it’s brought on by the people that claim to care the most about the patient’s psychosocial wellbeing.
Lou B Lou
Senior Member (Voting Rights)
On a political level the appearance of there being an effective service “a camouflage service” in place is much worse than having no service in place as it prevents people with power to change things from seeing the hole that exists in reality.