UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Isn't this just a list of things those consulted have come up with, rather than any coherent statement of policy or opinion? It seems to say that at the beginning.

As far as I can see it is just a list of the things we would have expected various different people to have said.

At ties it may look as if there is some sort of suggested synthesis and I suspect that reflects it being written by professional document writers who don't actually have any idea what they are writing about.

I think the opportunity to turn this into a sensible exercise was missed at the working group stage by the chairman.

 

Thank **** for that.

How can we avert the potential fresh hell arising from this?

I'm not able to read the report. Does it distinguish responses from patients and patients' charities from those from BPS proponents? So that it's clear that it's not patients calling for more psychological research into their non-existent childhood trauma?

 

Times a thousand.

 

Yes..I had not braced myself for the fact that anyone who was interested was clearly able to respond. You can almost hear the screeching of metal as certain people are trying to wrench the dialogue back in the direction of GET, childhood trauma and the need for positivity and recovery stories.

 

For clarity, from the link quoted,
"This document summarises the consultation responses only and is not intended to announce new government actions on ME/CFS. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan on ME/CFS, which we aim to publish by the end of March 2025."

 

Actual ME patients are still avoiding the NHS for our own safety. And we will continue to avoid it if the psychosocial lobby influence this so called delivery plan.

Anything about preventing deaths?

 

It’s so weird being patronised by “recovered people”.

It’s like if back in the day people who recovered after a nasty bout of polio spent insane amounts of time telling those got paralytic polio (leading to long term disability) how to think yourself out of the illness and recover.

Like what gives people such a god complex? I guess it’s enabled by people with institutional power but still.

It’s like someone coming from an upper middle class family who was living on “limited finances” during university or something telling a homeless person how to get out of homelessnes and blaming the homelessness on that person not trying hard enough.

 

"Like what gives people such a god complex?"

When people first discover so called mind methods, meditation, mindfulness, NLP, the LP Stop technique, visualisation etc etc - they think they've discovered magic, a means of controlling their lives, of controlling the physical world and the key to .... you know, life, the universe and ..... everything. They think they have discovered secret knowledge that you and I don't know anything about.

They can become born again evangelists on a mission. Or they may just have cottoned onto a new way of making money.

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I don’t wish to disparage relgion but it does feel quite equivalent to someone in the past suffering from illness, who prayed to a deity that they would get better and did indeed get better. Therefore they decide their deity saved them, and that everyone else who stays ill or dies of the illness must not have acted according to the deities rules.

It feels embedded in a sort of “I did my best and recovered, therefore I must have deserved it, and those who don’t didn’t”.

The randomness and lack of fairness in the universe is too cruel for people to accept, so they must find a way to rationalise them deserving something while other people who didn’t get that thing did not deserve it.

Edit: I think this is called “just world bias” or “fair world bias”

 

"Like what gives people such a god complex?"


The inventors of NLP, John Grinder and Richard Bandler, actually called their early book on NLP
'The Structure of Magic'.

https://blackwells.co.uk/bookshop/p...by-Richard-Bandler-John-Grinder/9780831400446


'These seminal works in neurolinguistic programming (NLP) help therapists understand how people create inner models of the world to represent their experience and guide their behavior. Volume I describes the Meta Model, a framework for comprehending the structure of language; Volume II applies NLP theory to nonverbal communication.'

Though later Grinder and Bandler emphasised that NLP is not therapy but 'education' or 'training'.

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This one in particular needs MPs involved I think. It’s about human rights beyond just healthcare access (as well as hugely affecting that)

get this wrong and it’s justifying bigotry belief system as something ‘only a problem when we won’t internalise it’ despite that being about the most violating and harmful thing you could do to a person

there should be no old staff at all anywhere near writing it - quite the opposite it should be like sexiest or racist behaviour courses and if you can’t deprogramme and update your issues then you can’t be in any positions around patients (of any kind). Not that you get to write the course on how women/other races/pwme should be 'perceived' (or worse with some bs that you can 'balance' bigotry with 'this bigotry is harmful tosh and we need to be treated as normal humans who are just ill'). Even if it wasn’t about pushing harmful treatment no one should endure such just to get access to care etc ?

 

In a normal world it’s plain unkindness , inappropriateness and a lack of insight - even if someone did have the same situation they’d actually lived through

so that people saying it in the way they do isn’t met with bystanders looking at them as such is indeed the weird new turning black is white disability bigotry etiquette

And I will say it comes directly from BACME and bps staff clapping them or even asking for them / trawling for them.

 

Abuse and gaslighting can no longer be part of /the main part of the standard model of care for any pwme accessing treatment fir any medical issue - it’s just bigotry that is unacceptable

I’d hope these submissions are taken as evidence of how vile it is out there when you give permission to the ‘call women hysterics and make up nasty stories to do so’ people that they can and not only get away with it but get benefit from it etc

 

I think it shows lack of insight from old staff etc

I can imagine in places I’ve worked the reaction of most male staff if there was eg some group on how to treat women or of white staff if it was about others races or minorities would not be that they would lead the voice in deciding what those peoples experience or issues were but they’d feel very awkward and that it was inappropriate for them to mansplain. Yet I really don’t know what’s going on with these people who are determined to tell us ‘what they did didn’t hurt or have consequences’ or even stick more on us.

And mostly these aren’t people even with any proper broad real psychology qualification (‘delivering CBT’ without that is just like a qual in ‘delivering a training course’ it doesn’t mean you are qualified in knowing if it’s either healthy or true what you deliver - and I’m saying that to be factual not ‘harsh’ ) just labellers , and dabblers from unrelated professions (physio, OT, nursing isn’t BPS-qualified psychology with the accountability of that even if they did do some ‘extra’ niche in pain or NLP they like to think is ‘in psychology’). So it’s just laypersons chucking round myths that cast aspersions and remove peoples truth and identity.

If they had any modicum of realisation of what they’ve put many through they’d have wanted to stand back and listen to the impact and hear how they need to change. That it isn't about them and their views of these people anymore, but removing that. And that their job is to hear others not speak over them anymore and call names to excuse that. It's actually quite shocking.

How their manner impacts. How their communication approaches that coerce those exhausted (embedding CBT) remove informed consent and are in cases bullying etc by using energy others don’t have to overpower ‘joint discussions’ and using positions of power to stick untruths on people that not only have no benefit (as they try to claim) but how awful a thing to do from any school of thought. The test is if someone spread similar rumours that were untrue about them I’m sure they’d be not ‘thanking the person for their help’. It’s a dehumanising perspective to decide someone else deserves different to themselves (and the old stuff they base it on was never ok or right anyway)

not how they can control those people in what they are allowed to say even now. Discrimination is the receiving end - even if the giving end delude themselves it isn’t unkind, callous and harmful those are the consequences and they need to stop hurling more slander ‘it only harms because you catastrophised’ . Those people and attitudes should have no place in any public system role (even beyond heakthcare) or position which has unsupervised responsibility over an other

 

All we are asking for is safety (from others being told to dismiss our need for adjustments to access things essential to survival) and from harmful lies so we can get our identities back and stop it affecting every single part of our lives in a disgusting way

to be given some remnant if a survival (we can’t call it a life)

yet I get the impression all this shows is that to some it is a nasty little game which results in taking peoples everything from them not just their life but accountability for who they were and whether they ‘deserved’ that , their ‘that they existed’

I pray there are some sane not unkind people who read this and realise what an emergency of a job this is to stop this torrent of harm people ‘live’ under that has destroyed their health by taking away access to anything anyone might need and encouraging mistreatment at all levels. It seems so transparent to me that this shows attitudes that no human could claim was sustainable for a victim ti live under

 

So it looks like they gave massively oversized representation from the psychobehavioral lobby, both-siding a position with <10% interest with the main >90% one that is guaranteed to have been voiced far more. Which is literally the problem that needs to be fixed. They literally put more interest to the problem itself, and the people who embody it, in a program that is all about fixing those very problems. Good grief.

And the psychobehavioral continues to display just how utterly intellectually and morally bankrupt they are by presenting all the things they have been doing for decades as worth exploring never-been-tried-before. It's ridiculous how facts don't even matter here.