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

Sean said:
Cowardice is a word that should be used more to describe what is going on.
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Agree. There’s no excuses. Hospitals and their staff have repeatedly failed people. We’ve had enquiries. If the medics won’t act voluntarily (they haven’t) they should be compelled to by government. If there were more public attention and acceptance of the condition there would be an outcry and people would be shamed into action.

Edit: i suspect some will say you cannot force doctors to treat people, okay, but we have methods for other procedures doctors refuse to do for matters of beliefs. At least then doctors have to make it clear they refuse and separate themselves from the person’s care and someone who will steps in. Right now it’s a conspiracy of silence and blame shifting. They are responsible, they need to act or own it.
 
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Jonathan Edwards said:
I received a draft template for services. I am asked not to share it. All I can say is that it is as feared.
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Very disappointing to hear. I felt a little bit hopeful after your comment yesterday. Is that our hope for severe services shot down or are there things afoot that might change things?


hotblack said:
If there were more public attention and acceptance of the condition there would be an outcry and people would be shamed into action.
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Yes precisely. And the retrospective anger when this finally breaks into the public conciousness isn't going to save anyone who needs help now.

hotblack said:
They are responsible, they need to act or own it.
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Yes, they have a policy of starving and withdrawing care from the worst affected, and gaslighting the mildly and moderately affected into doing disproven and poorly evidenced treatments that many of the patient population report catastrophic harm from. And yet they are allowed to get away with never openly admitting this. It makes me furious.
 
Jonathan Edwards said:
I received a draft template for services. I am asked not to share it. All I can say is that it is as feared.
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Do you get any sense that any of the charities & advocacy organisations involved in the process understand the fundamental problems with current NHS provision - i.e. the current network of psychobehavioural clinics - or are they essentially all on the same side as BACME on this?
 
Jonathan Edwards said:
I think there is more scope for lobbying for severe services and the door does not seem to be as shut as some advocates suggested.
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I wonder if there's a vision for severe services that everyone could unite around?

What's missing for us is the consultant who's usually at the centre of patient care, even if some of the routine monitoring is done by nurse specialists. Are there models where a GP is in that role? Or would it be better to argue for a hospital clinic to be the centre of care?

We need to be able to say clearly what it is that we want, but it has to be informed by current models and realities.
 
hotblack said:
Edit: i suspect some will say you cannot force doctors to treat people, okay, but we have methods for other procedures doctors refuse to do for matters of beliefs. At least then doctors have to make it clear they refuse and separate themselves from the person’s care and someone who will steps in. Right now it’s a conspiracy of silence and blame shifting. They are responsible, they need to act or own it.
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That's a weird idea. Laws can absolutely compel physicians, and they will follow the law if there are consequences attached. But what's needed is resources more than anything, and that is a strictly political process. The entire AIDS program was a 100% political process that followed a political movement leading to policy changes.

It's reasonable to argue that this should be a last resort, when all else has failed and there is no other solution. There is no other solution, this is absolutely necessary.

Health is political. Health care is political. Medicine is political.
 
Nightsong said:
Do you get any sense that any of the charities & advocacy organisations involved in the process understand the fundamental problems with current NHS provision - i.e. the current network of psychobehavioural clinics - or are they essentially all on the same side as BACME on this?
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There are individuals involved in consultation who see the problems very clearly but so far what I see from organisations is blinkered. I will talk with Sonya tomorrow and may change my mind. I also think that the 'same side as BACME' problem is most specifically with the MEA. ThereForME are gung-ho for services and I suspect simply do not see the complexity. MERUK is a puzzle to me because there are some insightful people there but they produce some questionable information - not so much BACME based maybe though.
 
Kitty said:
We need to be able to say clearly what it is that we want, but it has to be informed by current models and realities.
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I think you want a hospital unit with clinics and domiciliary services. Primarily so that the doctors get wide-ranging ongoing continuing education and an opportunity to find out what we don't actually know. The government push for a GP/'community' base is a huge issue and may prove insurmountable but at least it is worth trying.
 
I suspect they will follow this example:
  • ME/CFS has an unpredictable prognosis and recovery depends on many factors. However, with appropriate treatment many people are able to have more control over their symptoms and are able to increase their activity levels.
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which has full backing of BACME, the Sussex and Kent ME/CFS society, and its medical advisors who incl Alastair Miller, (the MEA and AfME have previously congratulated the Sussex and Kent soc but never afaik spoken out against them, even when they wanted to stop the new NICE guideline).
 
Tessa Munt MP in the Commons today 5/2/2026 (there is a video of this with the Leader of the House response in the Commons, but it is not on Youtube, should be on parliament tv. The video is on Tessa Munt's Bluesky profile, video link below:

"This morning I asked about Savannah Victora-May, a young woman with very severe ME. Savannah has been in hospital for 11 months and a dearth of specialist treatment has contributed to her desperate condition.
Last July, the Government released its Final Delivery Plan for ME which committed to developing a specialised service for those with very severe ME. Until there is tangible progress with this, there will be more cases like Savannah's.
I hope to speak to the Minister soon to see what can be done to accelerate this urgently needed service."


The above is only part of Tessa Munt's statement, all of it on the video. Tessa said (I have to paraphrase) that the deaths of people with ME should never become events, but that it is difficult to see how they could be avoided in the current situation (of no specialist services, I think she meant). The Leader of the House replied that if Tessa wanted to explore what more could be done he could arrange a meeting for Tessa with the relevant Minister.


Video from the Commons:





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Sonya gave me some back-channel details on what is going on yesterday, which are confidential.
This is encouraging. Maybe the dots will finally connect.
Lou B Lou said:
Last July, the Government released its Final Delivery Plan for ME which committed to developing a specialised service for those with very severe ME
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Did it? There seems to be no commitment in a recent memo from DHSC.
 
In the "delivery plan" they committed to exploring it, no more:
DHSC, with NHS England, will explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS
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Initial discussions have taken place and further development is required, including the establishment of a clinical committee to provide expert clinical advice to ministers. NHS England also remains committed to working with a wide range of patients, patient groups and other stakeholders in the development of its commissioning of specialised services. Ultimately, prescribing a specialised service will be a ministerial decision and subject to funding availability.
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https://www.gov.uk/government/publi...atigue-syndrome-mecfs-the-final-delivery-plan
Jonathan Edwards said:
Sonya gave me some back-channel details on what is going on yesterday, which are confidential.
This is encouraging. Maybe the dots will finally connect.
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Is there any reason to be hopeful that AfME's position on the clinics has evolved at all?
 
ME Local Network are becoming an effective voice for Grouos ans refer t the lived experience.
They have good, experienced, local charity support groups leafs, active with the delivery plan and Forward ME.

I am an old sceptic,.... but have been hugely encouraged by the teams recent efforts.

As of 1st October, our draft spec went out to Procurement with contract awarded, and mobilisation still underway, October 2025, under steer of Dr. Luis Nacul.

A specialist nurse also heads the team.

It's taken an age to get this far since our ICB stated they were committed to Transformation to new service late 2021 and started in warmest under the 2022 new Health Act.

Our spec included provision for the severely affected.

What that amounts to, time will tell, but the commitment us there.

Whatever the DOH decide, realistically with current pressures and constraints , you are looking at 4 to 5 years negotiation- as NHS Commissioning grinds so slow, especially in the current constrained climate, redundancy.
Even when the will was clearly there from 2017........
Well done to Suffolk Commissioning to travel that tricky path with us.
 
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