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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Well that’s incredibly disappointing. Thrown under the bus again.

I guess we should wait for official word on what this is rather than interpret too much. But equally plan on what to do next and what to focus on that we may still be able to influence.
 
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.
 
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