“The more ill you become, the less care you receive” - Severe ME Inquiry Report 2026, UK Action for ME and 25% ME group

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Trish

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Quote from AfME article introducing the report.

A major new report from Action for ME and the 25% ME Group exposes the devastating reality facing people with severe and very severe ME, revealing systemic failures in health and social care and calling for urgent action from Government, the NHS and public services.

For many people living with severe and very severe ME, the more ill they become, the less support they receive.

Today, Action for ME and the 25% ME Group have released a report following an inquiry, initially started by the APPG on ME, into the experiences of people with severe and very severe ME across the UK. Drawing on evidence from people with lived experience, families, carers, clinicians, researchers and organisations, the report paints a deeply troubling picture of unmet need, exclusion and harm.
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The report concludes:
"The current system is not only failing to meet need but is, in some cases, causing harm. Without urgent and coordinated action, people with severe and very severe ME will continue to experience avoidable suffering, exclusion, and risk."
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AfME article | Report
 
2. Key Recommendations

Immediate patient safety actions (within 6 months)
These actions are needed urgently to prevent avoidable harm and improve the safety of people with severe and very severe ME while wider reforms are implemented.

1. Ensure urgent and equitable access to life-sustaining care
Introduce national standards for rapid access to nutritional support, specialist input, and hospital care where needed, with clear “red flag” criteria.

2. Establish a national framework for severe and very severe ME
Develop and implement a nationally mandated service model, including a clear service specification and referral pathway, specialist provision, and community care standards.

3. Protect patients and families from inappropriate safeguarding interventions
Strengthen statutory safeguarding guidance to prevent the misinterpretation of ME symptoms as (for example) self-neglect or fabricated and induced illness.

Priority system reforms (within 12 to 24 months)
These reforms are needed to address the underlying causes of poor care and ensure
consistent support across England.

4. Introduce mandatory training across health, social care, and education
Require all relevant professionals to undertake ME-specific training when they are caring for a person with severe and very severe ME to enable safe, suitable care.

5. Strengthen national leadership, accountability, and data
Introduce stronger national oversight of severe and very severe ME through dedicated clinical leadership, annual reporting on implementation and
outcomes of the ME/CFS Delivery Plan, improved national data collection, and the inclusion of ME within wider health inequalities monitoring and workforce planning.

6. Improve support for children and young people
Ensure children and young people with severe ME can access appropriate healthcare and education that is flexible, based on individual need, and does not require them to exceed their energy limits.

7. Accelerate ME research and innovation
Recognise severe and very severe ME as a national research and innovation priority, supporting the development of diagnostics, treatments and clinical trials while positioning the UK as a global leader in post-infectious disease research.
 
Midnattsol said:
That is very similar wording to the Norwegian ME association’s report on jow the severe is treated.
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A copy-paste approach leading to copy-paste outcomes, failing identically everywhere, for all the same reasons. Funny how that works.

Kind of unsaid but mild patients get no care, so it's "less care" from a starting point of none, which makes it even worse. Always worse in context, and always worse the more context is added.
 
rvallee said:
A copy-paste approach leading to copy-paste outcomes, failing identically everywhere, for all the same reasons. Funny how that works.
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I have no idea if the efforts leading to the two reports were the same or different but I don't see how either of them failed if they reported what they found faithfully, and the fact that two independent reports came to the same conclusions highlights the desperate need for change in severe ME/CFS care.

rvallee said:
Kind of unsaid but mild patients get no care, so it's "less care" from a starting point of none, which makes it even worse. Always worse in context, and always worse the more context is added.
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Being inaccurate doesn't help our advocacy efforts. In the UK at least, some patients, who will tend to be mild or moderate, do actually get some care, however inadequate or inappropriate it actually is, and the fact that even that meagre and often undesirable offering isn't accessible for the vast majority of those most severely affected is an important thing to highlight.
 
Andy said:
I have no idea if the efforts leading to the two reports were the same or different but I don't see how either of them failed if they reported what they found faithfully, and the fact that two independent reports came to the same conclusions highlights the desperate need for change in severe ME/CFS care.
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That might have been a reference to how ME/CFS is treated, not how the reports were made.
Andy said:
Being inaccurate doesn't help our advocacy efforts. In the UK at least, some patients, who will tend to be mild or moderate, do actually get some care, however inadequate or inappropriate it actually is, and the fact that even that meagre and often undesirable offering isn't accessible for the vast majority of those most severely affected is an important thing to highlight.
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If you want to classify being sent to a rehab shop, being told to use an app, or look at a few generic websites as «care», sure.

None of that would pass as «care» for a patient with MS, PD or any other debilitating disease. We’re being pawned off to the fringes and people that don’t know what they are doing, so we stop clogging up the systems.
 
Utsikt said:
That might have been a reference to how ME/CFS is treated, not how the reports were made.
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Yes, it might have been, but it wasn't how it read.

Utsikt said:
If you want to classify being sent to a rehab shop, being told to use an app, or look at a few generic websites as «care», sure.

None of that would pass as «care» for a patient with MS, PD or any other debilitating disease. We’re being pawned off to the fringes and people that don’t know what they are doing, so we stop clogging up the systems.
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No, I don't want to classify it as such, which is why I used the words " inadequate or inappropriate" to describe it. However, other people will think it is care, and they won't understand why we don't view it as such - and it doesn't help our arguments with such people if we deny the existence of those services.
 
Andy said:
Yes, it might have been, but it wasn't how it read.
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I was going off the context of it being said by rvallee. I can see how it might read otherwise.
Andy said:
No, I don't want to classify it as such, which is why I used the words " inadequate or inappropriate" to describe it. However, other people will think it is care, and they won't understand why we don't view it as such - and it doesn't help our arguments with such people if we deny the existence of those services.
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For virtually all cases, it’s at best ineffective, but it’s mostly harmful. We can’t call what’s essentially medical abuse «medical care» because that’s what someone thinks it is.

And an important point in 5.2 is that many types of generic healthcare is inaccessible, like dentistry, imaging or tests, because they don’t know how to handle ME/CFS, or are unwilling or unable to do it. So we are actually getting less than what we would be getting if we had no specific care needs from an illness.
 
Utsikt said:
That might have been a reference to how ME/CFS is treated, not how the reports were made.
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Andy said:
Yes, it might have been, but it wasn't how it read.
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It was, though it wasn't clear. More generally to the approach of trying the same idea in loops, leading to the exact same outcomes everywhere. Every single report of how things are awful in X differ only in the names of places, because it's roughly the same everywhere. Reports like this are useful, but it's maddening how they themselves are basically copy-and-paste with a name change. Every single local story is the same global story within a border, and no one ever does a damn thing about it that isn't just copy-pasting the same failed approach.

And the same for time. Pick any place, any decade, and it's the same, because the ideas are all the same. And again with LC. Almost every study, for sure every 'pragmatic' trial, is a copy of thousands done before, so obviously the outcomes are also the same. Intentionally, is what is most infuriating.
Utsikt said:
That might have been a reference to how ME/CFS is treated, not how the reports were made.

If you want to classify being sent to a rehab shop, being told to use an app, or look at a few generic websites as «care», sure.

None of that would pass as «care» for a patient with MS, PD or any other debilitating disease. We’re being pawned off to the fringes and people that don’t know what they are doing, so we stop clogging up the systems.
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Also pretty much what I poorly said. It might check boxes of what health care looks like, but it isn't, and that's the best case, as most of us have no such thing, will have never even talked about ME/CFS with a physician who knows more about it than us. It's like the experience of a restaurant but without the food, or we're expected to eat printed pictures of a meal. It doesn't count to me.
 
Andy said:
In the UK at least, some patients, who will tend to be mild or moderate, do actually get some care, however inadequate or inappropriate it actually is
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I agree the difference is important. Thank you for making it. Even here I see milder/moderate people talk about doctors appointments or medical procedures or whatever. I have sympathies for the challenges they face but they are receiving care, as you say even if inadequate. It may be for for non me/cfs issues and doesn’t adequately take into account their me/cfs but they can still get it. If you’re severe you generally seem to get nothing. That lack of any support means very bad outcomes over time,
 
hotblack said:
I agree the difference is important. Thank you for making it. Even here I see milder/moderate people talk about doctors appointments or medical procedures or whatever. I have sympathies for the challenges they face but they are receiving care, as you say even if inadequate. It may be for for non me/cfs issues and doesn’t adequately take into account their me/cfs but they can still get it. If you’re severe you generally seem to get nothing. That lack of any support means very bad outcomes over time,
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I agree in the sense that what we don't want is people saying 'look we done something - and found there is a clinic down the road from you' and then you have to explain 'it's not a real clinic but the fake 'non-medicine' pathway to manage the outcasts to stay away and be harmed'.

If only because that load we all have to endure that is determined to make us iller than we'd need to be even if we'd just been left alone and they weren't influencing normal sane people behind our back that we weren't the people they thought we were so trashing our reputations and just how no healthy person could endure the load of how thoroughly ehxuasting and intrusive these parasites (inadvertent as some claim they might be or actually might be) and won't go away and get everywhere it all is.

ANd so this has been the worst possible design to put a foot on the neck and make people who never needed to become severe not just severe but severe and crushed with a foot on their neck and haunted by how horrible so many humans are (and no that's not trauma, it is just dark realising how selfish people are when they realise they've been given permission).

If only from a severe perspective that not only are we then not just left to die once put there, which clearly seems to be the policy now I'm afraid, but pushed over the edge by such services and help services for them then upping the ante but we've had more than anyone should have endured already. There is an argument for how much of our disability is injury really - the only question on that for many of us not saying they did it is the cleverness that they did it by making sure it was so many people involved then no one person can be named even if they were the original influence telling them all to do the wrong thing with every encounter etc.

The idea someone would say 'these nice people who ran these mild/moderate services will now try and expand to help you' is a living nightmare for those who are as harmed as they are because those same people determinedly won't see the consequences of what they insist in doing ie callous indifference and so hate you for being some living failure of what they call themselves 'helping profession' and nonsense untrue by what they do terms as identity.

You might have gathered I haven't yet come up with the just as strong but better-worded version of this, but I don't see any way forward to survival with tiptoeing around the fake offense of people who gave me no chance of existing even with my little bits of energy I did have. They aren't the type where us not putting on the table what they've done doesn't mean it won't be taken advantage of to twists things, and we know because we've watched them and done that giving them benefits of doubts and kindness they didn't deserve to 'play nice' in the hope they'd be appreciative and instead they took advantage.

But also because there is always some new generation coming in pretending they are the first to do it to you instead of the 2000th and impose another round of harm on you unless we start insisting this harm is actually properly not swept under the carpet in order that we can be blamed. There are some who just became severe or very severe through bad luck. Sadly most of us there is a heck of a lot of moments of truth where some human being chose to do the 'deaht by 1000 papercuts that aren't jsut papercuts' to us for their own reasons.

I also think we need to stop splitting the spectrum and that starts with those mild and moderate realising its vital that severe and very severe are listened to because without them understanding we are the consequences, not 'different to them', and stopping just using us as some 'example of not wanting to end up like that' but as real people with voices and a lot of experience we need their strength to back our voices for then we will be played forever, and I'm fed up of the same mistakes being repeated over and over.
 
hotblack said:
I agree the difference is important. Thank you for making it. Even here I see milder/moderate people talk about doctors appointments or medical procedures or whatever. I have sympathies for the challenges they face but they are receiving care, as you say even if inadequate. It may be for for non me/cfs issues and doesn’t adequately take into account their me/cfs but they can still get it. If you’re severe you generally seem to get nothing. That lack of any support means very bad outcomes over time,
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If they are receiving care for non-ME/CFS issues, then they are not receiving care for ME/CFS. So the original statement by rvallee is still right - the starting point is none. There is no ME/CFS care for anyone except a few lucky outliers, and the more severely affected are locked out from generic care as well.
 
hotblack said:
I have sympathies for the challenges they face but they are receiving care, as you say even if inadequate
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I deliberately steer clear of certain standard treatments since I am moderate because I’ve found that my body no longer responds to them. They literally have no idea what they’re doing when it comes to us, and lot of things has become dangerous or ineffective, but instead of acknowledging this and take time to have a reflexion about the unknown, they carry on making assumptions based on what they know – just like those governments that supposedly prepared for climate change and planned for everything needed during a heatwave, but… for July.
 
Bluesky post by @hopefullizzy.bsky.social:
One of the most necessary and accurate (to my and many others’ experiences) reports I’ve ever seen.​
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I wish all friends, family and certainly medical teams would read it. 1/7​
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www.actionforme.org.uk/wp-content/uploads/2026/08/Severe-ME-Inquiry-Report-August-2026-Action-for-ME-and-the-25-ME-Group.pdf​

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“There is an urgency to this issue that cannot be overstated.​
The evidence presented here shows that current failures are not benign – they have serious, sometimes life-threatening consequences.​
Delay is not a neutral act.” - @tessamunt.bsky.social​
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Trying to access an outpatient appointment with my consultant for example, has taken FIFTEEN people to sort out accommodating me because the hospital outpatient department cannot safely take stretcher patients…​
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Me & mum are called all the time by the hospital to ask us to make the go-between phonecalls - to people in the same building.​
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It takes a lot of our time, a heck of a lot of stress, and all of our energy. It’s wiped us out.​
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My GP has requested all my care be done in one trip. It gets refused.​
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And this is before we even leave the house.
I’m already in PEM… the appointment is in a week.​
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I have waited 20weeks for it.​
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It’s a huge risk to go, but the biggest risk is getting there on the day and this not being set up to go smoothly.
Which is why we try to avoid that at all costs.​
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And despite us working with the hospital for months and being assured this would be ironed out, here we are, again.​
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I am so unwell, & yet the burden of making these things as safe as possible for me is mine and mums to bare.
We are left to coordinate everything, constantly.​
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And it chips away at your health bit by bit… just to access (the irony) healthcare.​
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It is deafeningly clear that no-one understands.​
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It should not be this hard to safely access healthcare.​
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It shouldn’t be dangerous, but it is for so many of us.​
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It’s not ok.​
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I am treated like my medical needs are an inconvenience to them.​
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Like I’m asking too much just to get basic care.​
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Like it’s a lot of unnecessary work for them, (not taking into account the work we put in!) - rather than a simple need which will prevent severe ongoing consequences to my life.​


Lizzy has recently co-produced a remarkable video for severe ME day:
Chandelier

Post in thread 'United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)'

Beautiful reel on Instagram for severe ME day.

No account required:

August 8th is Severe ME Awareness Day in recognition and remembrance of so many enduring the debilitating and relentless reality of living with this condition.

Lizzy, who left a message for Trooper’s Hill in Bristol, has written and recorded a piece for today.
“It was somewhere close…almost within reach, if it wasn't for Severe ME.”
Thank you for your words.

This project holds many of their messages - messages for the places they love but are now absent...
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