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

merged
Woman with ME criticizes health plan for condition

Misdiagnosis

Ms Walker was initially diagnosed with fibromyalgia with fatigue, a condition causing muscular pain all over the body.

As a result of the crossover in symptoms, Ms Walker's ME was not recognised initially, leading her to be recommended treatment that was not tailored to both conditions.

"Something I feel really strongly about is people being given the right information at the point of diagnosis because if I had known what I was doing was harmful, I might not be in this situation."

Ms Walker said she has a "terrible, really poor quality of life" and that "hundreds of thousands of people have once again been let down" by the new delivery plan.

"We just aren't important enough," she said.

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Not to make a rigorous study out of it, but I'm curious to what degree people here think this plan meets the needs. Maybe a poll would be useful, but I don't think the forum software allows the kind of free range answers we need.

Personally I'd rate it about about 5% of an ideal plan, by which I don't mean something like the response to AIDS, which received billions in funding that goes on to this day, and widespread respect, even fear, but rather as something that is reasonable and commensurate, even ignoring the decades of neglect that warrant overcompensation.

I'd say that something like 40% is about the barest minimum, so a long ways off, while 80% would be acceptable, just less than idea.

It's hard to give this an accurate number, it's a complete wild-ass guesstimate, but gives an idea of where things stand. So a plan that is barely 5% of what is ideal, and I think that 5% is rather generous, is very far from deserving any praise at all.
 
rvallee said:
Personally I'd rate it about about 5% of an ideal plan
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The potential for the local healthcare provision, which is mostly likely going to be a nurse having done module 1, that has the potential to reduce access to doctors and specialists, it triages us out of the system without fixing anything. Balancing that off against the small progress on research is tough. 5% seems fair but its got the potential to take us backwards too just like the very similar (lack of a) plan did in 2002, I would say its got the potential to be -20%, all depends on the details. It can be used to make things worse.
 
Cinders66 said:
W e have leaders who chose collaboration with an establishment that ill serves us. Use of Chronic Fatigue syndrome helps Them to downplay the seriousness of the illness they are failing.
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Yes. This.

I fundamentally disagree with the placatory approach being taken on this.

We have had:

2002 The chief medical officer's working group report on CFS/M.E.
2006 The “Gibson report” Inquiry into the status of status of CFS / ME and ME and research into causes and treatment treatment
2021 NG206 NICE Guideline
2022 All Party Parliamentary Group (APPG) report; Rethinking ME
2022 The James Lind Alliance: ME/CFS Priority Setting Partnership
2023 The interim delivery plan on ME/CFS -
2024 Maeve Boothby O'Neill: Prevention of Future Deaths Report

None of these were followed up, despite making much the same claims as in this delivery report and recommending urgent biomedical funding.

The DHSC delivery plan and the prevention of Future Deaths (PFD) reports for Maeve contain mostly "suggestions"

The problems are already well known, and the necessary actions well defined, and have been for over 22 years. We have gone from pressing for urgent funding and action to coroner’s reports.

You can't make a silk purse out of sow's ear and we (especially the charities) need to be saying that

This is wholly inadequate and frankly insulting; pwME have been messed about and disrespected for decades. Being polite and playing by the rules has got us nowhere.

I think we need much more strident tone. This Delivery Plan is frustrating, not good enough and doesn't go far enough, fast enough - and that's being polite

The government want people well and back to work but aren't willing to have the hard conversations about what that will take, and the meantime people are being mistreated and dying in hospitals.

Good people gave up a lot of time and very scarce energy in good faith to contribute to this and we are being expected to be diplomatic and be grateful for breadcrumbs and "vision" "aims" and "need to explore further" No, you don't; you need to listen to the people telling you what needs to happen and fund it. Now!

This is my life, my health and my income at stake, diplomacy isn't enough or the right approach when it is so existential.

I don't think I am an unreasonable person, but I am completely and totally burned out from fighting every battle and writing every email and consultation response no one ever reads and we are not making any progress.

I need the charities to say that not" we welcome.." and " good first steps.."

Stop protecting egos and start pointing out the emperor is naked, the elephant in the room, the blindingly flippin' obvious.
 
Well said, @JellyBabyKid. So what do we do now? This forum has no official standing, we're just a bunch of mostly severely affected pwME scattered across the world, crying in the wilderness.

Efforts as a forum are largely ignored, dismissed and achieve nothing. We are creating fact sheets at great effort which a few individuals may be able to use to make some marginal effect on their care. Those of us who put every gram of energy we have into advocacy seem to just get sicker and achieve nothing.

I hear you over your efforts too, and there are countless others of us doing what we can, filling in consultation questionnaires, helping with wording of fact sheets, writing to politicians, going to meetings... the list is endless, and we're all grateful for the efforts, but in my local area, and the UK as a whole, it has all achieved precisely nothing.

And now we are even in disagreement with our charities. But even if they had spoken up saying the plan is simply not good enough, nobody in Government or the NHS would listen.

I still cling to the NICE guideline, but it now seems more like a sputtering candle than a bright beacon of hope. It's clear from BACME's current materials that they have used the bits in NICE that were clearly included to placate the therapists on the panel have enabled them to justify continuing as before with therapist led clinics providing shot term pacing up therapy sessions for mild and moderate new cases, and little else, and pretend they are NICE compliant.
 
Trish said:
Well said, @JellyBabyKid. So what do we do now? This forum has no official standing, we're just a bunch of mostly severely affected pwME scattered across the world, crying in the wilderness.

Efforts as a forum are largely ignored, dismissed and achieve nothing. We are creating fact sheets at great effort which a few individuals may be able to use to make some marginal effect on their care. Those of us who put every gram of energy we have into advocacy seem to just get sicker and achieve nothing.

I hear you over your efforts too, and there are countless others of us doing what we can, filling in consultation questionnaires, helping with wording of fact sheets, writing to politicians, going to meetings... the list is endless, and we're all grateful for the efforts, but in my local area, and the UK as a whole, it has all achieved precisely nothing.

And now we are even in disagreement with our charities. But even if they had spoken up saying the plan is simply not good enough, nobody in Government or the NHS would listen.

I still cling to the NICE guideline, but it now seems more like a sputtering candle than a bright beacon of hope. It's clear from BACME's current materials that they have used the bits in NICE that were clearly included to placate the therapists on the panel have enabled them to justify continuing as before with therapist led clinics providing shot term pacing up therapy sessions for mild and moderate new cases, and little else, and pretend they are NICE compliant.
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Thank you @Trish

I am as stumped as you; we seem to continually be banging out head against a brick wall. We are all taking all the actions we can and yet, still drowning.
 
Not sure if this has been posted:

#ThereForME response to the final Delivey Plan: https://www.thereforme.uk/p/campaign-update-24-responding-to

From the intro:
Last week Karen shared a thread on Twitter/X with some of her initial reflections on the Final Delivery Plan. While we had hoped that the plan might offer people with ME a clear, properly resourced roadmap towards a better future, the reality was that it did not.

In many ways, this was what we’d expected from the moment we heard that the plan wouldn’t be backed by targeted funding. A plan without a budget was always going to be pretty threadbare. Yet, while in many ways this was as expected, it was still a bleak experience watching our low expectations play out in reality.
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Trish said:
Well said, @JellyBabyKid. So what do we do now? This forum has no official standing, we're just a bunch of mostly severely affected pwME scattered across the world, crying in the wilderness.

Efforts as a forum are largely ignored, dismissed and achieve nothing. We are creating fact sheets at great effort which a few individuals may be able to use to make some marginal effect on their care. Those of us who put every gram of energy we have into advocacy seem to just get sicker and achieve nothing.

I hear you over your efforts too, and there are countless others of us doing what we can, filling in consultation questionnaires, helping with wording of fact sheets, writing to politicians, going to meetings... the list is endless, and we're all grateful for the efforts, but in my local area, and the UK as a whole, it has all achieved precisely nothing.

And now we are even in disagreement with our charities. But even if they had spoken up saying the plan is simply not good enough, nobody in Government or the NHS would listen.

I still cling to the NICE guideline, but it now seems more like a sputtering candle than a bright beacon of hope. It's clear from BACME's current materials that they have used the bits in NICE that were clearly included to placate the therapists on the panel have enabled them to justify continuing as before with therapist led clinics providing shot term pacing up therapy sessions for mild and moderate new cases, and little else, and pretend they are NICE compliant.
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Just to say @Trish that this is an excellent description of where we are. Cannot even find words any more. So despondent.
edit: In my local area, which was previously served by Dr Bansal, we now have paperwork with the Bacme logo all over it and it has a physiotherapist which it didn't when I attended. Has graded exercise been introduced? Awful.
 
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Trish said:
I still cling to the NICE guideline, but it now seems more like a sputtering candle than a bright beacon of hope. It's clear from BACME's current materials that they have used the bits in NICE that were clearly included to placate the therapists on the panel have enabled them to justify continuing as before with therapist led clinics providing shot term pacing up therapy sessions for mild and moderate new cases, and little else, and pretend they are NICE compliant.
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It's now four years since publication of the NICE guideline. I wonder if it could be argued that it's time for an update, or at least a correction to the 2021 guidelines. On updates, NICE says (among other things):

Corrections or changes to published guideline recommendations are made if an error or lack of clarity:

  • puts users of health or care services at risk, or affects their care or provision of services or
  • damages NICE's reputation or
  • significantly affects the meaning of a recommendation.

Some scope there?
 
JellyBabyKid said:
Yes. This.

I fundamentally disagree with the placatory approach being taken on this.

We have had:

2002 The chief medical officer's working group report on CFS/M.E.
2006 The “Gibson report” Inquiry into the status of status of CFS / ME and ME and research into causes and treatment treatment
2021 NG206 NICE Guideline
2022 All Party Parliamentary Group (APPG) report; Rethinking ME
2022 The James Lind Alliance: ME/CFS Priority Setting Partnership
2023 The interim delivery plan on ME/CFS -
2024 Maeve Boothby O'Neill: Prevention of Future Deaths Report

None of these were followed up, despite making much the same claims as in this delivery report and recommending urgent biomedical funding.

The DHSC delivery plan and the prevention of Future Deaths (PFD) reports for Maeve contain mostly "suggestions"

The problems are already well known, and the necessary actions well defined, and have been for over 22 years. We have gone from pressing for urgent funding and action to coroner’s reports.

You can't make a silk purse out of sow's ear and we (especially the charities) need to be saying that

This is wholly inadequate and frankly insulting; pwME have been messed about and disrespected for decades. Being polite and playing by the rules has got us nowhere.

I think we need much more strident tone. This Delivery Plan is frustrating, not good enough and doesn't go far enough, fast enough - and that's being polite

The government want people well and back to work but aren't willing to have the hard conversations about what that will take, and the meantime people are being mistreated and dying in hospitals.

Good people gave up a lot of time and very scarce energy in good faith to contribute to this and we are being expected to be diplomatic and be grateful for breadcrumbs and "vision" "aims" and "need to explore further" No, you don't; you need to listen to the people telling you what needs to happen and fund it. Now!

This is my life, my health and my income at stake, diplomacy isn't enough or the right approach when it is so existential.

I don't think I am an unreasonable person, but I am completely and totally burned out from fighting every battle and writing every email and consultation response no one ever reads and we are not making any progress.

I need the charities to say that not" we welcome.." and " good first steps.."

Stop protecting egos and start pointing out the emperor is naked, the elephant in the room, the blindingly flippin' obvious.
Click to expand...
I love this Jellybabykid.

Can we use it? We could send this to our MPs, the APPG, the charities, the press? (Not identifying you, just all repeating your words)
 
JellyBabyKid said:
The government want people well and back to work but aren't willing to have the hard conversations about what that will take, and the meantime people are being mistreated and dying in hospitals.
Click to expand...
There is a good angle here, when all others have fail, given the overall messaging around it: if you want to get us back to work, you need to do YOUR job, you haven't done your job, and that's why so many are out of the workforce, even more now with Long Covid.

Make it clear they are the holdup on an issue they are loudly putting front-and-center, and straight up refusing to even bother.

I would also go for the lack of professional pride. Having delivered nothing but misery and failure for decades, how can health care professionals not feel ashamed of it? Do they truly take no pride in their work at all? Because no one who does would be fine with the complete lack of results, with things being just as disastrous today as they were 50 years ago.

But it's not as if all of this hasn't been said and done before. Health care and medical systems are completely insulated. They don't have to mind any of this, there are no consequences anyway, and there is a general, sadly accurate, understanding that even in the most extreme case where a breakthrough happens, proves everyone wrong and shuts down all the deniers and doubters, no one will face any consequences. Not that it's something that can be changed, it's just how those systems are built. And it shows, because they make very little progress over time.
 
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my sister has just informed me that she heard that "the UK government has finally recognised ME"..............
So that's worked really well. :banghead:
People outside the ME bubble have no idea what has been going on for the last 30+ years and is still going on.
 
rvallee said:
There is a good angle here, when all others have fail, given the overall messaging around it: if you want to get us back to work, you need to do YOUR job, you haven't done your job, and that's why so many are out of the workforce, even more now with Long Covid.
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I made this point in a letter to the Times in 2006: https://archive.ph/wxgkO:
Sir, In 2003 a report commissioned by Action for ME from Sheffield Hallam University showed that the cost to the nation of ME (from benefits, lost taxes, healthcare, etc). is £3.5 billion a year. Yet I understand from Action for ME that the Government has not invested any money into any biomedical ME research programmes.

People like me who are diagnosed with ME are desperate to regain our health, come off benefits and return to normal lives. But no amount bonuses for GPs, threats of benefit deductions, or endless assessments by cogs in a hopelessly inefficient machine are ever going to be of any help to us.

[If the] Government is serious about getting people off benefit and back to work, it should start investing in biomedical ME research — if not to help those suffering from this debilitating condition, then perhaps for the benefit of the taxpayer.
ROBERT SAUNDERS

Balcombe, W Sussex
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Plus ca change.
 
MrMagoo said:
I love this Jellybabykid.

Can we use it? We could send this to our MPs, the APPG, the charities, the press? (Not identifying you, just all repeating your words)
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Absolutely..I have already sent most of it to my MP previously. Please use it wherever you can totally shout as loudly as possible

I have been advised that we need to add:

2025 2nd Prevention of Future Deaths order following inquest of SJ Lewis

And that the Delivery Plan says it will make these "never events" but how will that happen with this plan? Especially given there are currently 3 people with Very Severe ME in hospital (Karen, Savannah (Gigi), Dill, plus no idea how Carla is - and those are the ones we know about)

Ashley Dalton's Foreword stated that "in the worse cases some people feeling that their illness is not recognised... "

No, in the worse cases people are dying in hospital due to lack of suitable care, not to mention those who are severe and who whose carers manage alone 24/7 as best they can and those with VSME who struggle alone.
 
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