UK Government Delivery Plan for ME/CFS, published 22nd July 2025

Binkie4 said:
Does Charles sound less positive than in the initial MEA statement?
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Yes. ADDED: But everything he said was implicit and really explicit from the MEA statement. Formal statements from organizations that need to maintain ties with government agencies and others involved need to be read somewhat carefully, I think. I don't think it's realistic to expect them to make the same sorts of fiery statements that independent advocacy groups or individuals might make. There are always tensions between those who seek to exert pressure more from inside the system and those who really pressure from the outside.
 
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NelliePledge said:
If able perhaps you could let Sean O’Neill about this. He could maybe make use of it in his coverage.
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I’ve emailed Sean a couple of time this year with an idea for an article I was/am thinking of pitching to The Times about ME/CFS and my letters, but he’s not replied. If anyone else is in contact with Sean, please feel free to bring my letter to his attention. I think I’ve had 3 or 4 letters about ME/CFS in The Times over the years.

[Edit: letters]
 
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Suffolkres said:
Agree with Jo E re review of NICE.
Gillian Leng was an ally... she went
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She went to the board of Cochrane where she has been part of the "republishing" of the Larun et al review and the abandonment of the new review process. She must know the issues around ME/CFS, and yet has not replied to communications from the community. It is very hard to know what was going on there, but perhaps she was not as much of an ally as we thought. Perhaps the real advances came from the NICE staff who did the Evidence Review and those who controlled who was selected for the committee, particularly the Chair and vice-Chair.

Thanks @dave30th for the interview with Charles. That was quite a strong condemnation of it coming from Charles. It would be great if you could do another interview wth him about what the MEA is doing with Sarah Tyson and Peter Gladwell, and Elaros. i.e. what the MEA is trying to achieve for clinical care in the UK, and why it seems to be shutting people with ME/CFS out of the processes and the webinars related to that.
 
Hutan said:
She went to the board of Cochrane where she has been part of the "republishing" of the Larun et al review and the abandonment of the new review process. She must know the issues around ME/CFS,
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I believe she is also now president of the Royal Society of Medicine.

The “there is a way” texts obtained by FOI suggested to me that she might have been looking for a way to change the outcome of the new guideline process. She certainly appeared to have good relations with the person who sent her the messages. But that is just speculation.
 
Hi all, long time no see due to very severe ME. Saw plan and in the middle of preparing my own response. It's another formal complaint to the Minister DHSC - with teeth. Here's the current draft of the covering letter to the 22 page detailed complaint which I'm finalising.

The covering letter gives a flavour and have given the PHSO a brief overview of history, problems with the parliamentary progress of the delivery plan, and about the PFD Reports. That's why the PHSO have given me a Case Reference number.

Need a critique, thoughts, unwise? effect of submitting complaint to PHSO is double edged sword, if complaint not upheld, fact checking etc. Pile in... because my brain is now mush.

sorry it's so long. draft of complaint will follow in the next week or so.

Here's who they are: https://www.ombudsman.org.uk/about-us/who-we-are
Here is the purpose of referring complaint to them https://www.ombudsman.org.uk/about-us/what-we-do

Initially complaint must be to DHSC which I want to do before 2 September due to Coroner's deadline, but no hurry if anyone else wants to make their own complaint to their MP. Will be happy for people to use whatever they want from my complaint and add to it, just quote the case reference.
 

Attachments

Cinders66 said:
To be fair this article has been updated, changing Dr s quote a lot as well as strengthening objections of the patient https://www.bbc.co.uk/news/articles/cn5k54qz3lyo?fbclid=IwY2xjawL2tEJleHRuA2FlbQIxMQBicmlkETFBYXdtcjRvbXdhRUtQcmQ1AR6INbhTzQ23wJw2ixm5vGRcPju4shtvsAIPShIRrdg7Eky4wHIbf_pJw1_Ekw_aem_uweYgkVp-zapeokxCiJ4tQ&app-referrer=deep-link#:~:text=Maddie Walker, 51, from Bedfordshire,might not be taken up
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That's interesting, and I wonder if it's a bit unusual to update a quote like that and shift its emphasis so much. I wonder if Dr Shepherd felt his overall view hadn't been correctly represented. But the risk of that happening when you say, 'There are some good things but a ton of bad things,' surely means that you should ever only say, 'It's a ton of bad things.'
 
Sasha said:
That's interesting, and I wonder if it's a bit unusual to update a quote like that and shift its emphasis so much. I wonder if Dr Shepherd felt his overall view hadn't been correctly represented. But the risk of that happening when you say, 'There are some good things but a ton of bad things,' surely means that you should ever only say, 'It's a ton of bad things.'
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Yes I agree. It’s about the message you think most Important to send and that should imo have been the let down of the community, draw a line , have standards. . The Ashley D carrot-quote about possibly more in the future is Unacceptable given how long this has been going on and the harm as well as neglect that’s occured over that period. The other quotes elsewhere (paraphrase) that pwME had to accept a sucky deal because of financial constraints, basically we have to keep being skimped on to keep other areas more resourced, when elsewhere there is medical brag about the extra investment for dementia thanks to record funds for R& D etc don’t cut it either.
 
In the extended piece in the article by the ME patient, there was a reference to "neighbourhood services" by the DHSC and it came up in the delivery plan .

Do we know what these neighbourhood services are? I assumed they must have something to do with GPs. Doctors must be involved somewhere and we don't seem to have them in the specialist centres so there's only GPs.

I saw my GP yesterday and asked him about them being involved in giving specialist local care to ME patients, and he nearly jumped out of his seat. He said they knew nothing of this and would not do it without being funded. He is head of the practice and does a lot of the organisational work with the ICB so he would know if anything was being planned. He said ICBs were losing staff, lots of redundancies, Surrey and Sussex were combining into one. The 10 year plan came up- he referred to a 185 page plan. That there is no money came up.
Who is funding the neighbourhood services and what will they comprise? Do we have a thread on the 10 year plan? And especially on the neighbourhood services? (edited)
 
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Expanding the rheumatology lens: should we embrace POTS and post-infectious syndromes?​

Brittany L Adler brit.adler@jhmi.edu
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Like many of my colleagues who care for patients with dysautonomia, chronic fatigue syndrome, and infection-associated chronic illness, I stumbled into this work seemingly by accident. As a rheumatology fellow, I was trained to ask sharp, targeted questions to diagnose rheumatic diseases. When patients did not fit a recognisable pattern—when their symptoms, laboratory results, and exam findings did not add up—I would explain, often unhelpfully, that they did not have a rheumatological illness, and send them on their way.
 
Binkie4 said:
In the extended piece in the article by the ME patient, there was a reference to "neighbourhood services" by the DHSC and it came up in the delivery plan .

Do we know what these neighbourhood services are? I assumed they must have something to do with GPs. Doctors must be involved somewhere and we don't seem to have them in the specialist centres so there's only GPs.

I saw my GP yesterday and asked him about them being involved in giving specialist local care to ME patients, and he nearly jumped out of his seat. He said they knew nothing of this and would not do it without being funded. He is head of the practice and does a lot of the organisational work with the ICB so he would know if anything was being planned. He said ICBs were losing staff, lots of redundancies, Surrey and Sussex were combining into one. The 10 year plan came up- he referred to a 185 page plan. That there is no money came up.
Who is funding the neighbourhood services and what will they comprise? Do we have a thread on the 10 year plan? And especially on the neighbourhood services? (edited)
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I believe it ties in with the new “neighbourhood hubs” of the NHS 10 year plan recently announced by Streeting.

They haven’t been set up yet, so as per usual, don't hold your breath. Yes, our care will be from a service which was only invented last week.
 
Sasha said:
This is really interesting. I'm constantly saying to my GP, 'But loads of very elderly people in care homes must be bedbound, and it wouldn't be possible to transport them in a wheelchair because they couldn't cope with sitting for long. What happens when they need to see a consultant, or have an X-ray, or get hands-on treatment, and can't go to the hospital?'

And I can't even remember what he's told me, presumably because whatever it was, it didn't help.

But yes, are thousands of non-PwME also being left untreated in their beds by the NHS, with no question of their medical problems being 'all in their heads'?
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When I had cancer elderly patients were brought into the chemo wards on stretchers and placed in beds in more private areas with curtains away from other people being treated. I also saw elderly people stretched in for scans and Radiology. The Oncologist would come to the Chemo room to see them instead of asking them back for a regular appointment.

However, when I asked for somewhere else to get treatment I was told there was nothing apart from the chairs (which I was too weak to recline). I eventually did get access to one of the beds in the very end of my treatment.

Local care homes get a visiting GP. There is also Hospice nurses that visit there on request and the person doesn't need to be dying. My GP did arrange a Hospice nurse to visit my home when I had cancer as he knew she had experience in the problem I was having.
 
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