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

I keep hoping that will start to change if we find a disease modifier with good trial results for some patients.

There must be good people in related fields whose antennae would twitch if a real opportunity was opening up.
Hard though it is, trying to stay positive and solution focused.

I wonder if what what we need is a coming together of clinician allies like Drs Kane, Weir, Speicht, Nacul, Muirhead etc with comms expertise from AfME to find a way to reach them once decode lands and we have robust evidence to point to?

Surely Rheumatology and Immunology would be the fields to targetand their respective societies one potential way to draw them in.
 
I woke up feeling irritated and this thread has grown that into full on anger lol.. :banghead:

I wish someone could scream some sense into them. Like they say "oh we invested over £6.5m into research over the past 5 years and we're planning 2 new useless projects of around £2m". And we're supposed to cheer them on or something?

There's hundreds of thousands of patients desperately ill. People are dying due to lack of care or killing themselves because of the horrible disease burden and bleak outlook. It's costing the government billions annually in healthcare and disability. And they think this is an adequate response?

OK, time to calm down again.. :emoji_sweat_smile:
 
It sounds more as though we need things to happen in the opposite order - getting good doctors in so we have the research base from which to run clinical trials.

Ideally, yes.

But it's possible to run small trials without a whole specialist unit involved, and early trials of drug candidates for ME/CFS will presumably be a bit like that. If they strike lucky and a second trial confirms their findings, that's when people might start to take notice. It might shift that first domino off the point of balance.
 
It sounds more as though we need things to happen in the opposite order - getting good doctors in so we have the research base from which to run clinical trials.

But if there aren't any coming in and there is nothing to tempt them that isn't going to happen. Putting up money will just attract dead wood. Lie all these things, there is no recipe. You have to grasp opportunities as they evolve.
 
I keep hoping that will start to change if we find a disease modifier with good trial results for some patients.

There must be good people in related fields whose antennae would twitch if a real opportunity was opening up.

There is money for drug repurposing trials but there is a need for someone to run them and its not clear to me that there are groups ready to do this. Equally the hope would be that people in related fields (or those related to Decode Results) will get interested - however, there is no real incentive for them to do this when they can get funding for their current work without the challenge of moving to a new disease with ill defined methodologies. I assume that there is nothing in the plan aimed at building research capacity and making it easy for interested research groups to get involved - which is the real failure.
 
It clearly is not the start of anything. It is a way to wash hands of a problem.

Could be.

I’m confident there are at least some involved, including in government, who want to improve things. I’m less confident that they are up to the scale of the task, but in my mind that is different from wanting to wash their hands of a problem.

And I’m very glad we have someone as willing and qualified to call things out and stand up for what is needed as you are.
 
Surely Rheumatology and Immunology would be the fields to target and their respective societies one potential way to draw them in.

The interest will come through high level personal contacts in clinical academia. There has already been interest with setting up of DecodeME. Societies tend to catch up about 3 years later. The key target I see is Versus Arthritis, which has big funds for clinical projects and setting up academic posts. There may be neurology charities as well to target but I am less sure that would work.

The other avenue is to graft the ME/CFS programme on to an existing MRC funded clinical science unit (of which I can think of one or two).

We need to move into a completely different framework from what people with ME/CFS have been used to. I think that will happen.
 
the HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE), a new £1.4 million NIHR research programme, which will explore the cost effectiveness of existing healthcare models for both ME/CFS and long COVID with the aim of improving quality of care.

What's the point of this? We know they are crap. Chris and his team could do a lot with that money.
 
Maybe but when people say "Look, wow, we have this all-singing all-dancing plan just for you" rather than "We recognise that this is only a small first step and that a huge amount of further work is needed to make this into anything real"...
Oh yeah, the comms is awful. But political operations are gonna spin, they can’t help themselves.

We’re speaking about a whole group of people here, there’s going to be a range from the wanting to improve things end to the wanting to wash their hands (or at least being completely inept) end.
 
a new £1.4 million NIHR research programme, which will explore the cost effectiveness of existing healthcare models for both ME/CFS and long COVID
Clearly a total waste of good research money.

If you screw your eyes up really tight, you might be able to see it as an opportunity to point out it's a sham that's cost the NHS tens of millions of pounds and recommend an inquiry into who enabled it.
 
If you screw your eyes up really tight, you might be able to see it as an opportunity to point out it's a sham that's cost the NHS tens of millions of pounds and recommend an inquiry into who enabled it.

All I see is black with some funny dancing coloured dots.

And maybe an ethereal presence of Chris Burton doing 'pragmatic' trials.
 
A word of advice from someone who knows a lot about politics: don't use their language. The plan doesn't aim to boost or improve anything. Never privilege a lie, always call them out when you are dealing with this kind of systematic obfuscation and dishonorable lying.

And do not give credit for intent. The people responsible for this are not ten year-olds, there is no need to encourage them for their intentions, those don't matter one bit. It's outcomes that matter, and only outcomes. This won't change outcomes, and it's a total Dr Magoo bullshit that ignores the entire context and history, how it has been playing out exactly the same way for decades. There have been many reports and studies in the last few decades that make it clear this is a complete disaster, and they are doing nothing to improve on it. In fact this is a complete whitewash.
This. It’s painful to watch the politeness and by the threatening silencing anyone who advocates for me/cfs had to speak under dud to his unpleasant the people who run the sector are turning into politeness you end up with interviews where we look mad because the straightforward answer can’t just be said

These coercive abusers have turned it into a situation where the victims themselves go into interviews and muddy the waters because of how threatening their behaviour is even when they are offering zilch.

The whole interview needed to say just how ill x thousand are (no one knows because of the kid selling of what it is). And then that even they are not just getting no care and in fact abuse for their illness, but unlike anyone else with anything they are targeted in hospitals and all other services due to historic and current edicts. So that unlikely man off street getting medical care if the get hurt or something else the colleges suggest if you have this label you are waltzed out even with that.

And no one has started off by removing the people who have pretty blatantly showed their hand on this from being able to influence whether patients live or die etc.

So imagine why, with this sinister power issue being left, we have no services at all.

And yes I think we need to do better on gonna and start thinking how we compare to norms for other illnesses of similar level of debilitation and need and each and every moment of truth. So that we can do a good job of getting across how deliberate and counter productive much of it is

As long as we keep letting that narrative of nothing cos it’s fatigue being left even when we get as much tv time as this did and don’t say it how it is everyone is going to be left puzzled thinking ‘myseltery’ just like you know who wants it.

We are going to have to be brave enough to just tell it how it is in frank terms and weather these people’s tantrums. Because they don’t behave any more mercifully even if we are polite btw.
 
Ideally, yes.

But it's possible to run small trials without a whole specialist unit involved, and early trials of drug candidates for ME/CFS will presumably be a bit like that. If they strike lucky and a second trial confirms their findings, that's when people might start to take notice. It might shift that first domino off the point of balance.
How do we recruit/get access or come up with the idea by watching different segments longitudinally?

We don’t even have prognosis data confirmed. And yes it feels that was all rather deliberately gerrymandered to distort that when you look at it.

As is the no clinician situation clearly a symptom of it being made impossible/banned for anyone to be allowed to take that role.

Someone needs to tackle the bullying/off the books stuff if it is that which we all are cynical open minded about at first because surely no professional would be that sad but ….
 
But if there aren't any coming in and there is nothing to tempt them that isn't going to happen. Putting up money will just attract dead wood. Lie all these things, there is no recipe. You have to grasp opportunities as they evolve.
Any way for us to seize the Petri dish and get some stuff evolving?
 
This This This This This This

The missed opportunity is huge. The one thing that really matters if you want a real research program is a clinic base - at least one and preferably several academic centres with hundreds of cases under long term observation. The plan does the opposite. The Edinburgh experience with UK Biobank has shown just how hard it is to get reliable results without this sort of resource.
There need to be really good academic clinicians wanting to run such services. I hope that will come soon but just at the moment there are no very obvious candidates practicing in the UK.

Having a clinic with interested and curious clinicians backed by researchers is key!

It's one reason why I posted this video by a researcher outlining the same issue for ME/CFS as for diagnosing rare disease. GP's can't diagnose the cases properly, and the researchers with the latest tools have data on outliers that they can't get into the hands of clinicians.

The two HAVE to be brought together. Such a clinic model could be much bigger than just ME/CFS if it also solved cases that look like ME/CFS but are in fact rare disease, which would widen funding avenues. This is why the below comment makes so much sense. For example the Qeios hypothesis talks about activated macrophages. Activated macrophages are part of Arthritis. That's why suggestions like below make sense.
The interest will come through high level personal contacts in clinical academia. There has already been interest with setting up of DecodeME. Societies tend to catch up about 3 years later. The key target I see is Versus Arthritis, which has big funds for clinical projects and setting up academic posts. There may be neurology charities as well to target but I am less sure that would work.
 
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