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

[Suffolkres]

Agree with Jo E re review of NICE.
Gillian Leng was an ally... she went
DHSC Delivery Lead Wendy Lippmann was an ally... she was moved out.....
Wendy has a daughter with ME....

 

[dave30th]

Some scope there?

Isn't 10 years the standard review period. It does seem risky to push for this now. It's like people sometimes want to amend the US constitution in ways that would be helpful and suggest callng a constitutional convention to do so. But if that were to happen, any changes could be made--including horrible ones.

 

[dave30th]

Does Charles sound less positive than in the initial MEA statement?

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.

 

[NelliePledge]

I made this point in a letter to the Times in 2006: https://archive.ph/wxgkO:


Plus ca change.

If able perhaps you could let Sean O’Neill about this. He could maybe make use of it in his coverage.

 

[Robert 1973]

If able perhaps you could let Sean O’Neill about this. He could maybe make use of it in his coverage.

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]

 

[Hutan]

Agree with Jo E re review of NICE.
Gillian Leng was an ally... she went

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.

 

[Robert 1973]

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,

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.

 

[dave30th]

she has been part of the "republishing" of the Larun et al review

do we know if she's had any actual involvement in that?

 

[Peter T]

do we know if she's had any actual involvement in that?

Wasn’t she part of the Board (?) meeting that reportedly made the formal decision to backtrack on the new review and endorse the old Larun et al disaster?

 

[Jonathan Edwards]

I don't think Leng was the reason for a good pitch in 2019. She was handed the baton with the weightings already in place. I think the RCP tried to row back but Peter Barry and Ilora Finlay were clear about their job specification - get the right result if you can.

 

[Maat]

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.

 

[Suffolkres]

I don't think Leng was the reason for a good pitch in 2019. She was handed the baton with the weightings already in place. I think the RCP tried to row back but Peter Barry and Ilora Finlay were clear about their job specification - get the right result if you can.

I am sure you are right. ..