Six things you’d like to see in the Delivery Plan for ME
Sharing feedback from our readers about their priorities for the Delivery Plan
We’re back again with another post about the Delivery Plan for ME. To recap, in March 2025 the Department of Health and Social Care (DHSC) will publish a cross-government delivery plan for ME/CFS, aiming to improve attitudes, bolster research and better lives. Last week DHSC gave us permission to share the list of organisations invited to join the Task & Finish group for the plan and we’ll be joining the group’s second meeting today.
A couple of weeks ago we shared our priorities for the Delivery Plan and asked the community for feedback. As ever, you did not disappoint. It was great to see that many of our priorities resonated for you, alongside plenty of new ideas and helpful challenges. Here’s some of the themes we’ve pulled out from the ideas that were shared, which we’ll be taking forward as we join the discussions today.
1. Leaving behind debunked approaches and adopting a UK-wide approach
Several suggestions focused on the big picture of the Delivery Plan. First and foremost, it was clear that many of our readers would like to see the delivery plan framed as a clear step away from the psychiatry-led approaches that have dominated care and research for decades, framing ME as a primarily psychosomatic condition. It was suggested that the Delivery Plan should make a clear statement on this, articulating that it is putting forward a complete break from the past.
There were plenty of suggestions for concrete actions to achieve this ambition, such as the complete removal of debunked approaches such as graded exercise therapy (GET) from medical textbooks, NHS services (including the lingering concept of ‘pacing up’), and literature used by healthcare workers (such as the Cochrane Review).
Thinking of the UK-wide picture, readers suggested that they’d like to see the Delivery Plan go beyond England to cover devolved nations, asking the important questions: what about Scotland? What about Wales? While healthcare is devolved, we’d certainly like to see a Delivery Plan that puts forward a framework for a consistent UK-wide approach.
2. Prioritising research funding
For many of you, a commitment to ring-fenced funding for biomedical research is the number one priority for the Delivery Plan. Some of you shared ideas for how you’d like this funding to be prioritised. For example, by using additional funding to support the development of a diagnostic blood test. It was raised that our call to establish a Centre of Excellence for ME research echoed long-standing advocacy to expand ongoing work at the Quadram Institute in Norwich, funded by Invest in ME Research, to develop a European hub for ME research.
3. Going further on healthcare worker education
Many of you also emphasised the importance of educating healthcare workers, which was stressed in the Interim Delivery Plan. There were several comments highlighting the need to go further in this area. For example, by making training mandatory (similar to new training for autism), ensuring that ambitions on education are accompanied by measurable goals and adding a greater focus on PEM (Post-Exertional Malaise) into NHS e-learning materials already developed.
For many readers, a focus on PEM was the main element that should be emphasised in any training, including reasonable adjustments that may be needed. Some also stressed the need to educate healthcare workers on severe ME and the latest biomedical research.
4. Focusing on prevention, monitoring and managing symptoms
There was also lots of feedback on the overall focus of NHS services. Many of you emphasised that you’d like to see services focused on monitoring symptoms and preventing deterioration to more severe forms of ME. Handily, this mirrors the government’s own shift in focus from “sickness to prevention”.
There were several suggestions emphasising the need for ongoing monitoring and personal care plans, similar to long-term support for other conditions (for example, asthma). We appreciated the practical suggestion to officially designate ME a “long-term condition”, generating NHS Quality and Outcomes Framework payments to support GP surgeries to monitor patients in the long-term.
Many of you would also like more support in managing symptoms. Several readers echoed our call for NHS uptake of technology-enabled solutions (such as wearables) for at-home symptom monitoring and management. We also saw many comments focused on off-label prescribing of low-risk medications. We think the clinical consensus guidelines we’ve recommended would be a step in this direction, balancing the need for patient safety with learnings from existing practice.
5. Easily accessible services
It was clear that many of you are wanting to see services that are easily accessible within energy limitations - you’ll be seeing more from us on this soon!
While our emphasis on care in community seemed to resonate, many stressed a particular need for domiciliary care (or, as one reader put it, an NHS that’s #HereForME). Some of you wanted to see the most severe patients supported at home by trained specialist nurses. It was, however, emphasised by some that any care should be overseen by doctors, working as part of specialised multidisciplinary teams.
It was suggested that, where inpatient care is required, this could be provided in a hospice setting, avoiding the need for stays on busy hospital wards. Several readers stressed the need for reasonable adjustments such as at-home and remote appointments, ventilation and air filtration, darkened lighting and better support with transport when in-person assessment is essential (a shout out to one reader for spotting these dementia-friendly calm ambulances).
6. Beyond healthcare: public education and wider support
Last but by no means least, several comments addressed how the Delivery Plan can tackle challenges for people with ME across society. There were several calls for a public education campaign, going beyond healthcare to counter stigma and misguided understandings of ME in society, educating the public about the symptoms of ME, the severity of the condition and its impact on people’s lives.
Several readers stressed the need for better support for unpaid carers for people with ME, who are often left on their own without medical input or practical guidance. This was emphasised in comments from patients as well as carers, who wanted to see their carers better supported and listened to as their advocates.
Finally, several comments reflected how approaches from the Department for Work and Pensions (DWP) have posed challenges for people with ME. Our readers highlighted how language matters, and that current DWP rhetoric has made people with ME feel like a burden to society amidst a ‘back to work’ squeeze on disability benefits (despite being offered little meaningful care and limited research into treatments). Readers also stressed the need for DWP assessors to be better trained to understand ME and its impact on day-to-day life.
Looking ahead
So there you have it - six things you’d like to see in the Delivery Plan for ME/CFS.
We’re looking forward to keeping you updated as the process unfolds. There will be one more Task and Finish group meeting after today, following which the plan will be finalised.
We’ll keep sharing what we can about how we’re seeing the plan develop. Until next week!
Thank you for this. You’ve been listening and have presented the feedback incredibly clearly for us all.
It seems that for decades ME has been organised by an outdated business model which replaced the primarily scientific plan. I understand that finance is at the root but since the late 80s business models have prevailed often presented as scientific treatments but are basically business. This has stymied innovation of all kinds. I believe this is intentional but it succeeds in simply going round in circles.
The current government’s threats about benefits have been used before by previous governments. Apart from being cruel and dangerous they are incredibly short sighted.
I’m not expressing this very well, sorry. Brain fog rules today!
Starmer and reeves have both disgracefully written in the Tory media about the need for ruthless cuts to benefits. Let's be clear benefit cuts kill people. The current labour government is stigmatising disabled people claiming benefits through it's reactionary rhetoric that we are a burden on society.
I have no faith whatsoever that the DWP will change it's murderous policies towards disabled people. I would urge people to read John Prings new book, The Department, which chronicles in forensic detail how the DWP has caused the deaths of hundreds of disabled people.
As John McDonnell MP has stated recently there needs to be a public enquiry into the actions of the DWP. I would add that the UN has severely criticised the DWP for it's repressive actions in its April 2024 report into the UK.
Unless disabled people with ME can access benefits, when they are too ill to work, then that will make their health much worse.
Sadly, the self appointed spokespersons of the ME community such as the ME Association, ME Action don't take this issue seriously.
One last thing. No one in the ME community wants to tackle the taboo issue of suicide amongst people with ME. I've interviewed scientists doing research into this area but no one wants to touch this issue which is very unhelpful.