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

Apologies if this is actually a blindingly obvious question, but I have spent too much time reading various people's thoughts about this whole thing today and my brain has completely given up on me; does the Delivery Plan already have cross party support?

Thanks in advance.

 

It is presented as a cross-government interim plan:

"The government is committed to supporting all people living with ME/CFS. On 12 May 2022 the government announced an intention to develop an ME/CFS delivery plan to improve the experiences and outcomes for people with the condition. The Department of Health and Social Care (DHSC) has led cross-government work to develop this interim delivery plan."

But it does say that it builds on the "comprehensive work of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME)": https://questions-statements.parliament.uk/written-statements/detail/2022-05-12/hcws23

 

Thank you

 

I will try but I’m not sure I’m going to be able to send an individual response. Is anyone working on a collective one? If I don’t manage to send my own comments I would like to be able to submit a response saying I agree with the comments submitted by S4ME (or whoever).

 

In case it is useful to anyone, my "master doc" is over on this thread: https://www.s4me.info/threads/4-uk-...onsultation-agreed-actions.34691/#post-493245

 

I may have missed it but why would I sign a BPS letter given how pwME have been regarded by them?

 

I'm not sure it is for us to sign rather a requests for psychologists or psychiatrists to sign it. I don't think that this is the 'official BPS (British Psychological Society) one' though - I imagine there are probably a few different ones about (?) with people from different angles etc even within those general areas.

For interest, however, I've just read this one through that is linked to here from Tom Molmans and it is very much the perspective I think many of us might agree with - that BPS ie psychologists need to 'get with the programme', and the first pages detail the condition with references like dialogues for a contested illness and so on. I've copy and pasted the points bulleted at the end before their references below (I hope that is OK?)

but one line really stands out that comes just before this 'action' type part which is:

 

Moved posts

Carole Bruce
@CaroleBruce17

47 psychologists, academics and psychiatrists who believe #ME to be a biomedical condition have signed this to the British Psychological Society about the DHSC delivery plan.

9:17 AM · Sep 15, 2023

Jo Greer
@DrJoGreer

https://tinyurl.com/OpenResponsetoBPSreDHSCIDP
47 psychologists, academics & psychiatrists have signed an open response to @BPSOfficial
re the DHSC Interim Delivery Plan for #MyalgicEncephalomyelitis, stating that #ME is a 'serious, chronic, systemic, potentially life-threatening biomedical disease’.

11:24 PM · Sep 14, 2023


Open Response document on Google Drive at: https://tinyurl.com/OpenResponsetoBPSreDHSCIDP

 

This is very good. Clear and to the point. Does not mince words in key areas, such as talking about continuing harm, since plenty of harm has already been done. Many thanks to those who signed to this important document. The right side of history is never comfortable, but it is rarely that clear. Continuing with the psychosomatic ideological model is blatantly unethical.

It was unethical from the start, time has proven it beyond any possible doubt, and the longer this goes on, the more credibility the medical profession will lose. Given the overlap with a psychological model, so does the psychological profession. It is wrong to miscategorize illnesses, it serves no purpose whatsoever and only does harm at greater cost than doing nothing. This will all be very uncomfortable given how influential psychosomatic ideology has gotten, but the loss of credibility will not get better with time.

 

I'm struggling to read through the plan and know the right places that you'd even start to cover some of these issues.

1. I've seen others on social media mention the need for education to cover other services e.g. dentists, opticians and so on. I agree here. There is a major issue with the old fatigue and CFS nonsense meaning that whenever those more severe try and use their precious energy to educate we get ignored because these people often prefer to believe the simplistic behavioural and fatigue and when what we might say as we struggle to speak differs from that then 'mental health bigotry gets weaponised' and I mean they aren't doing it for 'mental health' or any good, just weaponising fake, nasty, disgusting presumptions as non-psych people that they must know better because we look ill so must be talking nonsense. I don't know how to put that into simple words but there is a revolting acceptance of the worst kind of selfishness and bigotry out there, because BPS has given them words to hide the worst kind of weaponising of the very bigotry anyone who wasn't a mental health bigot would say was the opposite of OK. Talking over the face of people who are cleverer than them just because they are so ill their words are slow to come out, and the agenda of the person who is supposed to be listening prefers the misinformation is what I'm talking about. Then using fake disses to remove their voice by suggesting 'they are a little bit mad' whilst pretending they are 'saying that to be kind' instead of just using the nastiest and most disugsting of power-plays is what I'm talking about.

We have another issue here, because I've been told there is an issue e.g. with dentists where they can't charge more for complex patients because that would be discrimination. So those who 'seem harder work' will effectively 'lose money'. So how do we take this issue at face value and make sure that for those where their condition will mean extra needs there are actually services that will be able to supply this so they don't fall between cracks or ring up asking for someone to 'do them a favour' effectively on the basis of some sob story many are taught not to believe? What is the set-up for those who are very/most ill with other codnitions accessing the additional care that they need?

Dentists need to know not only for appointments and adjusmens when there or lead up, but so we don't get jdged on behavioural and talked to like we are kids who you pretend to be sympathetic to but are secretly thinking we just need hard tough love for on stuff like tooth brushing or what we eat, drink and so on. THe utter cruelty when someone talks to you and you know in their head they are orders of magnitude off and secretly think their tiredness from havng kids means they are beng 'really kind but they are actually more tired than you on a daily basis' when you are just trying for your words to be heard when you say there might be days where you literally can't move out of bed and x is the impact on what their 'advice' (based on normal persons ability with eat, drink, brush) needs to make it relevant at all.

 

The ME Association's response, https://meassociation.org.uk/2023/0...sponds-to-government-consultation-idp-me-cfs/

 

Physio for ME's response, https://www.physiosforme.com/post/physios-for-me-respond-to-dhsc-interim-plan

 

There are some good points there.

 

Looking at the ME Associations response about COFFI and lightening process today reminded me that one big issue we face is being able to say MORE than just ‘not helpful’ on these things but noting that these and the many other dodgy courses ICBs might throw money at are actually harmful.

harmful when they are marketed using lies about us to family, friends and employers and harmful in the not well-veiled bigotry assumption that ‘just a little motivation’ would do us good and maybe we just aren’t thinking our way around our disabilities enough. When the truth is that the same people are ACTUALLY minimising the disability (including in their own heads, with closed ears and eyes when we correct them - filling their cognitive gap with presumptions we are decrepit due to 'motivation' or 'mental health' in a way which is neiher evidenced nor correct) and we are doing the impossible with the lack of adjustment being anywhere near our threshold being what leads us to be getting more ill and us causing unnecessary disability levels

it outrages me that ‘in the name of’ we have someone with 'good intentions' ticking the box and spending money on these as if 'it can only do good to offer something' in the absence of other things. And that better-positioned (so not scrabbling for surivial in a job or financial situation or needing medical care) milder or fatigued people might say they quite fancy whatever ‘not helpful’ course and re all nice and kind about how deluded such leaders are 'but they are very nice about it even if they are suggesting things that aren't going to do me much good' etc. Those who really need the basics are then left in positions not to be able to fight back or ignore these things, and the word of those who just turned up and were polite then over-rule them. And all the funding given to some dodgy course that gives power for these people to claim ‘expert’ who will never be that way as they don’t intend to listen or open their eyes because it isn’t in their interests as they are just motivational positive psychologysellers

meanwhile those most ill, and the paradigm because the main and most important part of the spectrum is missing gets warped around entirely the wrong thing.

I agree with those saying the wrong people are involved and that many of the staff need to be removed and reprogrammed.

I also think it needs to be underlined that these ‘fops’ ICBs kids themselves are nice added extra placeholders ‘in the absence of real treatment’ are doing massive harm. Particularly in the form if propaganda. And when I guess that I’d be mild rather than severe barring a few bad years and wouldn’t have had a life of daily abuse and hardship being thrown at me, and given my abilities that would have meant a utterly productive life, I find it outrageous these people get away with claiming what accounts for causing most of my disability and misery ‘help’ instead of ‘disability causing’, 'added disability cause' or whatever, because that's what giving out misinformation has done.

How do we write and underline that NOT spending money on funding certain things and giving power to misinformed individuals, and stamping out their misinformed voice, is as important as what IS planned for in this consultation?

because I feel we get forced into self-censorship not calling abuse abuse when it’s plain as day someone muck-spreading and pushing conversion courses is unkind and undermining, but only in ME-land where it’s mostly women and all are so vulnerable so we get made to not say it lest we apparently be being the unkind ones. It shouldn't be allowed that we are called 'rude' for something that never had any evidence of working, just because it was thrown together by someone deluded who claimed good intentions because they didn't do enough personal research to know it doesn't 'work for everyone' to be called out as bad - when said individuals aren't doing it for free or without personal gain after all.

 

ME Research UK's response to the consultation, https://www.meresearch.org.uk/our-response-to-the-dhsc-interim-delivery-plan-on-me-cfs/