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

[Trish]

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.
....

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

 

[Andy]

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]

That is very similar wording to the Norwegian ME association’s report on jow the severe is treated.

 

[Adam pwme]

I couldn’t find any reference to the prevention of future death reports.

 

[rvallee]

That is very similar wording to the Norwegian ME association’s report on jow the severe is treated.

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.

 

[Andy]

A copy-paste approach leading to copy-paste outcomes, failing identically everywhere, for all the same reasons. Funny how that works.

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.

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.

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.

 

[Utsikt]

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.

That might have been a reference to how ME/CFS is treated, not how the reports were made.

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.

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.

 

[Andy]

That might have been a reference to how ME/CFS is treated, not how the reports were made.

Yes, it might have been, but it wasn't how it read.

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.

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.

 

[Utsikt]

Yes, it might have been, but it wasn't how it read.

I was going off the context of it being said by rvallee. I can see how it might read otherwise.

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.

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.

 

[rvallee]

That might have been a reference to how ME/CFS is treated, not how the reports were made.

Yes, it might have been, but it wasn't how it read.

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.

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.

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.