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

[Jonathan Edwards]

Simply put the care and support I need isn’t in my mind currently a hospital thing. Maybe it will be in time and if we can get under a specialism then great but that isn’t a quick thing I don’t think. I don’t care how it’s delivered but ai want it delivered.

The interesting thing is that this judge has been beset by very serious problems over many years under a particular specialty and when I argued the case above she said 'Yes, I see what you mean, if ever I have a problem I go straight to (X specialist hospital) and the care there is fantastic every time'.

 

[Ash]

And there we were four years ago thinking the NICE guideline would make a difference. We've been stitched up yet again. The same therapists doing the same useless stuff and pretending it's NICE compliant, and still no services for people with severe and very severe ME/CFS. I guess we should have understood better that without support and active determination to change for the better from any of the doctors organisations or health service funders, nothing would happen.

I’d guess many of us understood that the outcome was an absolute certainty. But, even without the element of surprise or disappointment, to be faced with the results of these semi regular reinforcements of the status quo is quite horrible.

There isn’t any attitude or study to insulate ourselves from minding being subjected to this slurry, I think.

With many of us, in bed without the stamina to forge our own path, watching this one be reformed over & over is a claustrophobic experience.

 

[hotblack]

The interesting thing is that this judge has been beset by very serious problems over many years under a particular specialty and when I argued the case above she said 'Yes, I see what you mean, if ever I have a problem I go straight to (X specialist hospital) and the care there is fantastic every time'.

Yes, specialists are great when there is a specialism and they have something to do. I suppose my point is, we don’t yet have that. So need something in the interim. I’m just trying to make things better given what’s in front of me.

 

[Jonathan Edwards]

But in terms of specific actions, what can we do?

As I have said before, commenting on what not to do and actually fuelling a constructive process that will get useful progress are two very different things. My view is that where S4ME can contribute is in terms of spreading the word about the science coming out and getting one or two high quality academic clinicians to see that there is a real problem to put their minds to, both in science and translation care terms. We can feed the process by making use of expertise here on gene identification, biochemical pathways, immunology, everything. Things will really turn the corner when an academic physician funded by MRC puts in an application for a clinical science unit that can work on the science and also on management of very severe cases from an enlightened perspective.

If a neuro-immunology professor at Queen Square or Addenbrookes picked up on ME/CFS as something worth tackling in the way that Fluge and Mella already have, then we begin to have a wedge that can drive out all the other garbage.

 

[Chestnut tree]

But in terms of specific actions, what can we do?

I would start a mass media campaign to bring the message that yes this can be a deadly disease. We need the public at large on our side. That will drive societal change.

I would also start a press agency to start targeting all news media and start a lobbying group to influence politicians.

 

[Chestnut tree]

As I have said before, commenting on what not to do and actually fuelling a constructive process that will get useful progress are two very different things. My view is that where S4ME can contribute is in terms of spreading the word about the science coming out and getting one or two high quality academic clinicians to see that there is a real problem to put their minds to, both in science and translation care terms. We can feed the process by making use of expertise here on gene identification, biochemical pathways, immunology, everything. Things will really turn the corner when an academic physician funded by MRC puts in an application for a clinical science unit that can work on the science and also on management of very severe cases from an enlightened perspective.

If a neuro-immunology professor at Queen Square or Addenbrookes picked up on ME/CFS as something worth tackling in the way that Fluge and Mella already have, then we begin to have a wedge that can drive out all the other garbage.

Apologies if this is already happening. But is it an idea to start spreading the excellent S4me newsletter to GP’s and specialists?

 

[Sasha]

If the world was my oyster and I had an unlimited budget, I would start a mass media campaign to bring the message that yes this can be a deadly disease. We need the public at large on our side. That will drive societal change.

I would also start a press agency to start targeting all news media and start a lobbying group to influence politicians.

Understood, I also like to do some 'If I was a billionaire...' thinking sometimes.

But I'm wondering what we here, with 50p in our pockets, and only our brains and internet access can do.

 

[Sasha]

We can feed the process by making use of expertise here on gene identification, biochemical pathways, immunology, everything.

Maybe the wrong thread to ask this question, but what do you mean by gene identification, and is that a process that the unskilled can help with? Is it a matter of scanning papers and looking stuff up?

 

[Jonathan Edwards]

Maybe the wrong thread to ask this question, but what do you mean by gene identification, and is that a process that the unskilled can help with? Is it a matter of scanning papers and looking stuff up?

Anyone can have a good but I am thinking chiefly of the high level expertise we have here for making sense of the gobbledygook of genetics results, noting pitfalls and putting things in a tight perspective.

 

[V.R.T.]

Things will really turn the corner when an academic physician funded by MRC puts in an application for a clinical science unit that can work on the science and also on management of very severe cases from an enlightened perspective.

If a neuro-immunology professor at Queen Square or Addenbrookes picked up on ME/CFS as something worth tackling in the way that Fluge and Mella already have, then we begin to have a wedge that can drive out all the other garbage.

So how do we go about this then? Is it a case of wait for DecodeME and everything else, and then approach them as a community? Or is it more a case of someone who knows someone having a cosy chat with this hypothetical Addenbrokes professor in The Eagle?

 

[Kiristar]

I notice how doctors often have no understanding of fatigue. There seems to be a large gap in education, which is surprising because fatigue is one of the most disabling aspects in many illnesses. They can confuse fatigue with daytime sleepiness, with rapid muscle fatigability, with depression, and with poor fitness. They may not understand that fatigability is potentially disabling, or that fatigue often means being unable to be active consistently and for most of the day, or that the ability to do one activity is a very poor indicator of overall ability to function of a person with fatigue.

One way patients are working against their own interests is to try to separate themselves from fatigue because it is misunderstood and has negative connotations. But that allows the misunderstanding to continue. I read that in France, patients have taken a different approach, and are trying to educate about and destigmatize fatigue.

Not educating people on fatigue means that they will continue to interpret it in the only way they can, via personal experience, or by thinking of the next closest thing they learned about.

I really struggle to explain fatigue to Dr's, I tend to use the word energy but had "tiredness" added to my GP record by the Dr I spoke to. Are there any good French materials that could be translated to English to help?

 

[Kiristar]

I was invited to join Forward ME around the time of the NICE committee. I said thank you but no. My reason was not that opinions appeared to be fragmented, making consensus impossible. It was the opposite, that everyone was boxed in to the same unhelpful model of the situation. Moreover, members were expected to stick to the party line in public statements. I needed to be able to point out that people were wrong when they were wrong. Getting things right in this sort of context is an extraordinarily complicated process that benefits from exactly the sort of back and forth disagreement we have here, where everyone gradually comes to see all sides of a problem and where we have been making false assumptions. And it has to keep going on because we still have so much to learn.

Just a thought but it might be worth revisiting now there is a different chair and members and it operates quite differently?
There seems to be room within it for different perspectives on most things (my point on consensus specifically related to the need to avoid lots of conflicting asks of government for the DP) and I think your insight needs to be heard and more widely discussed to help others understand...
Unless that all happened already before my involvement of course in which case apologies.

 

[dave30th]

It is a bit like saying of a new $80billion nuclear submarine that sank on launching "thank you, we liked it as far as it went'.

well, this is what keeps happening Elon Musk's rockets, but apparently blowing up is part of the effort at progress. I just think "rubber-stamping" is really too strong a term here. If that's considered "weird," so be it.

 

[Jonathan Edwards]

So how do we go about this then? Is it a case of wait for DecodeME and everything else, and then approach them as a community? Or is it more a case of someone who knows someone having a cosy chat with this hypothetical Addenbrokes professor in The Eagle?

I was thinking more of lunch at Trinity High Table. I find it a good place to talk!

I was also wondering about consulting a colleague about the tingling and numbness in my hands and feet.

I think there are all sorts of avenues. We might even get Matt Brown the Ank Spond geneticist interested if some genes do come up. He has the sort of analytic mind needed.

Chris Ponting is going you make sure whatever he finds gets coverage. And so on.

 

[Jonathan Edwards]

I have taken the position of waiting to be asked. That has worked most times, just not for the delivery plan consultation (beyond RWG stage).

Just a thought but it might be worth revisiting now there is a different chair and members and it operates quite differently?
There seems to be room within it for different perspectives on most things (my point on consensus specifically related to thed to avoid lots of conflicting asks of government for the DP) and I think your insight needs to be heard and more widely discussed to help others understand...
Unless that all happened already before my involvement of course in which case apologies.

 

[MrMagoo]

Agreed. Say my GP surgery has 5 people with ME/CFS and maybe there are 8 others that are within a small enough area you'd even begin to call it local. That is max 40 pwme. Before you start deciding a certain severity doesn't warrant access.

So whilst going to a hospital isn't actually easy at all, I can't see how it won't mean either the services where it is the dodgy part of town 'local' (unfamiliar with, but maybe technically closer to some) by geographic area and/or lumped in stuff with other illnesses.

But no staff trained specifically in our illness. Because if they won't fund one proper nurse for the bigger level then how are they going to train someone locally?

I had a local GP. One of the reasons I chose it was that it was close, on a main rd, could take a bus, space for taxi drop-off.
Never got an appointment there. They had a consortium of practices and I could only ever be seen at a different practice which was impossible to get to and all kinds of “too far away”.
I imagine the neighbourhood care for ME going the same way “yes, just a mile away….across the river”

 

[MrMagoo]

Absolutely.

TfME don’t seem to be on the same page as many of us in terms of what is required, or the means by which we could move the dial.

I don’t think an individual or group that would say what was required & stand firm would be allowed to participate. If allowed I don’t know how many would have capacity or willingness to stick around under such disadvantageous conditions, battling a sewage filled sea of bad ideas empty promises, ineffectual support, misinformation and prejudice.

Also any contributions that are solid and represent a meaningful challenge to the status quo, are almost certain to be disregarded. Such is the nature of these (non) contribution opportunities.

This latest (non) collaboration has gone the way these will always go when people don’t offer solid opposition. I don’t know what we can do about this because organisations that are naive or unprepared to fight or desperate or hopeful patients will always be plentiful and ready to engage on the terms of those denying us care. Where they will certainly lose. To all our disadvantage.

I doubt There for ME mean to be rubber stamping this. But the organisation are lending this product credibility by engaging with it without the necessary critical analysis, or forceful rejection.

It’s devastating to see the progress made over Maeves parents public exposure of her tragic abandonment and horrific death be swept aside in a sea of vague airy nothingness.

Our chance to break with this dynamic of failure with inevitable deadly outcome would be to engage exclusively on our own terms.

My view of TfME is that because of the diplomatic background, they’re very diplomatic.
Which is fine, that’s their choice. A lot of us would like to see some undiplomatic push-back against this rubbish.

 

[MrMagoo]

I really struggle to explain fatigue to Dr's, I tend to use the word energy but had "tiredness" added to my GP record by the Dr I spoke to. Are there any good French materials that could be translated to English to help?

I have started to explain fatigue/increased symptoms.
When I am fatigued I feel nauseous, or unsteady, or breathless, or I shake involuntarily.

 

[Trish]

On the BACME News thread:

Someone said earlier on this thread that BACME were not involved in development of the plan. Their statement says they were, it is signed:

Anna Gregorowski, BACME Chair and BACME Board members past and present who contributed to the development of the DHSC Delivery Plan

I note in particular their statement makes it clear they think existing therapist provided services should continue. Yet the Development plan says mild and moderate should be the province of GP's.

 

[rvallee]

Given what's just happened around the plan, it seems that the ME/CFS community itself doesn't understand what's needed - and it's understandable that ordinary PwME don't. We don't understand the system. I think this issue of 'specialist care' needs unpacking because we here know there are no effective treatments, so what should specialist care look like, beyond what a GP would do for individual symptoms such as pain and insomnia?

Specialist care also keeps the problem out of sight, and out of mind. Let's say a health care system opens up a few specialist centres that are not disastrous. Best case they would be able to see, let's say, 1-2% of the patients within that system. To GPs, the answer is simple once they suspect ME/CFS: send them to a pathway that is a complete dead-end. Problem disappeared. And we'd still be left with a majority being unwilling to diagnose in the first place, since they'd be discouraged to.

Even a very best case where such centres have the ability to see 10-20% of the patient, this would be in total, not every year. It still leaves out at least 4/5 patients, while to the rest of physicians, the problem has been solved, tucked away in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying 'Beware of the Leopard'.

The only viable solution, in my opinion, involves research clinics with long-term stability and genuine patient involvement. Which is more or less what I took away from one of @Jonathan Edwards's comment. Without this, nothing matters. The clinics have to learn. They can't just be there and be passive receivers of whatever comes out of research, nothing will come out until we get a biomedical first clue. They need to drive it, to be 'multidisciplinary' not in the sense of having a few different specialists, but in having clinicians, researchers and nurses who get a deep understanding of the reality of the condition in all its aspects.

Which is not a guarantee in itself. The vast majority of 'ME doctors' can spend their entire career learning nothing more than what someone would understand by reading through a few threads here, many have shown the exact same inability to grow with Long Covid. This system needs to have intelligence, to be able to adapt and learn and be transparent about its results.