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

MEA update on the new end-of-June publication timeline, which apparently "follows requests from the Task and Finish Group members to allow for more time to develop the Plan".
The department also state the extended publication timeline allows for the plan to be more closely aligned with related government strategies, such as the upcoming 10-Year Health Plan.
The Task and Finish Group, where both Action for ME and The ME Association are represented, will meet again to review “a more comprehensive set of actions for further discussion.”

We are pleased to see that the DHSC has taken concerns raised by members of the Task and Finish Group, regarding its lack of ambition, seriously. The increased timeline and further engagement present an opportunity to strengthen the plan, ensuring that associated actions are meaningful and impactful for people with ME/CFS.
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https://meassociation.org.uk/2025/0...e-have-issued-an-update-on-the-delivery-plan/
 
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Nightsong said:
MEA update on the new end-of-June publication timeline, which apparently "follows requests from the Task and Finish Group members to allow for more time to develop the Plan".
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Sadly, all this seems to do is confirm that the plan is empty. The government strategy is a disaster so things can only really get worse. Everything will be shunted to privatised health centres. Why can we not have an open public debate?
 
I did have some hope for this plan, have tried raising it with my MP, etc. But it’s not looking positive is it.

To be honest I wouldn’t mind if they closed all the specialist clinics. They’re a waste of time in my experience and used as somewhere to shuffle people off to, part of the mechanisms for avoiding responsibility for us. Of course I don’t have experience of the LC ones so maybe they have been of use to some.

What we really need is to be under a specialism as Jonathan and others have suggested in the past.
 
I think that this post on Action for ME sums up the position of many patients who've been waiting for progress a long time and met an unacceptably indifferent response:

Michael Van Zattern:
And of course, no matter how well written the delivery plan with regards to what needs to change, none of that change is possible without significant, ringfenced, funding. Why on earth do they think it is ok to NOT fund research into an illness with a prevalence of IBD, MS and Parkinsons combined, that also happens to have the worst health related quality of life of any serious illness it has ever been compared to, including stage 4 cancer and renal failure? https://pubmed.ncbi.nlm.nih.gov/26147503/
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People with ME/CFS have waited far too long for meaningful action. In May, all 72 Lib Dem MPs wrote to demand urgent funding & a proper plan from the Government. The response was full of warm words but no real commitments. You can read more about it here:

www.wendychamberlain.scot

Campaign for People with ME/CFS

In May, all 72 Liberal Democrat MPs came together to send a clear and united message to the Government: people living with ME/CFS deserve better. Ahead of World ME Day, we wrote to Health Secretary Wes Streeting calling for urgent action and meaningful funding for the forthcoming Final Delivery...
www.wendychamberlain.scot www.wendychamberlain.scot

 
One of the criticisms of the 2002 chief medical officers report was the lack of accompanying money for research, despite the advice for a program of research on all aspects, including commissioned. Unfortunately the MRC response to the commissioned bit was “no” and the charity response was okay we will collaborate with you anyway.
I hadn’t known we have been in this predicament before. https://www.theguardian.com/uk/2002/jan/12/medicalscience.health

"More research into the causes and treatment of ME/CFS is needed, says the report, but while the government has asked the medical research council to develop a research strategy it did not announce any new money to pay for it.
"We are disappointed that the government has made no funding announcement," said Chris Clark, chief executive of Action for ME. "This disease is costing hundreds of millions of pounds and investment is needed to stop the waste. But otherwise we're very happy. This is the first breakthrough."
 
Cinders66 said:
One of the criticisms of the 2002 chief medical officers report was the lack of accompanying money for research, despite the advice for a program of research on all aspects, including commissioned. Unfortunately the MRC response to the commissioned bit was “no” and the charity response was okay we will collaborate with you anyway.
I hadn’t known we have been in this predicament before. https://www.theguardian.com/uk/2002/jan/12/medicalscience.health

"More research into the causes and treatment of ME/CFS is needed, says the report, but while the government has asked the medical research council to develop a research strategy it did not announce any new money to pay for it.
"We are disappointed that the government has made no funding announcement," said Chris Clark, chief executive of Action for ME. "This disease is costing hundreds of millions of pounds and investment is needed to stop the waste. But otherwise we're very happy. This is the first breakthrough."
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Sounds like we're about to relive groundhog day then...
 
Kiristar said:
Sounds like we're about to relive groundhog day then...
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I don’t think a lot of people with M.e realise that we’ve been through this pretty much all before. And even the first time was supposed to be about Adressimg decades of hostility, harm, bad care and lack of progress. The funding wasn’t given for research, the MRC ignored the recommendations in its own strategy, the nhs did its own thing regarding fatigue clicincs & for 20 years they bungled alongdoing it their way with little but waste, disaster and harm, alongside the small progress in services and research that have been made. Much more with huge urgency still needs to me done. Their way didn’t work. This plan needed to be one that finally did.
 
Kind of funny that they can't deliver a delivery plan, even one that isn't even a plan, and so would deliver nothing anyway. Using a ridiculous excuse nonetheless. As if anyone buys that this dud is taking is too much effort from their work on their overall NHS plan, or whatever.

Well, more pathetic than funny but there is a huge element of absurdist humor here.
 
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