Campaign Update #24: Responding to the Final Delivery Plan for ME

After a long delay, the UK Government's Final Delivery Plan for ME/CFS was finally published last Tuesday. As you may already be aware, the plan fell far short of our expectations. This week we’re taking a closer look at the plan, sharing some highlights from last week’s media coverage, and taking a step back to remember why all of this matters.

A closer look at the plan

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.

When we were first involved with the final stages of the Delivery Plan process earlier this year, Karen and Binita shared six things they wanted to see in the Delivery Plan. How does the plan compare?

1. We wanted strong action on patient safety

We’ll start with a positive. The Delivery Plan does at least mention patient safety (once). In the plan’s foreword Health Minister Ashley Dalton writes:

“ I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events.”

This nod to patient safety and avoidable deaths gives a clear statement that can be used to hold the government to account. Commitment to concrete action on this front is, however, lacking: the plan commits only to ‘explore’ whether a specialised service for Very Severe ME should be prescribed, leaving this task in the hands of Health Secretary Wes Streeting.

2. We wanted the government to accelerate research

We’d hoped to see the government ring-fence significant funding for biomedical research, while working with patient advocates, philanthropy and industry partners to leverage additional funds. Instead, the plan announced two research projects (HERITAGE and PRIME), worth £2.2 million combined, which were billed as new investments but in reality independent of the plan. The plan’s flagship NIHR investment for repurposed interventions remains limited to grants of £200,000.

The plan points to the need to build capacity in ME research. However, concrete actions consist only of a Decode ME showcase event and the offer for researchers to receive support from MRC/NIHR with funding applications. Structural weaknesses in the research sector due to decades of underfunding remain unaddressed.

3. We wanted more to be done with existing tools

The new NIHR funding is limited in value and likely to move at a slow pace, but we were nonetheless pleased to see a focus on repurposed pharmaceutical interventions. One of our campaign’s key recommendations is for greater uptake of tools like off-label medications — which are already routinely used to treat ME in the private sector — in NHS practice.

Unfortunately, the plan offers next to nothing that would change clinical practice in the immediate term. The consensus guidelines for the treatment of ME that we called for do not feature. Nor does a focus on tech-enabled solutions, despite the government’s focus on moving ‘from analogue to digital’ in its newly released 10 Year Health Plan

4. We wanted to see better care in the community, especially for those most severely affected

DHSC’s press release on the Delivery Plan centred on care in the community, promising to bring ‘care closer to home’ for people with ME, in line with the 10 Year Health Plan. While people with ME — just like those affected by other conditions — require specialist care infrastructure that goes far beyond the community, high quality, safe and appropriate care closer to home is key to accessibility. This is particularly true for the sickest patients.

However, as in other areas, the plan is light on the details, failing to flesh out what this would look like beyond a vague commitment to implementing the 10 Year Health Plan. We’d hoped to see commitment to support in areas such as domiciliary care, specialist nursing and access to Continuing Healthcare (CHC) funding. We hope that the government’s focus on care in the community means these remain on the table for future discussion.

5. We wanted a plan backed by institutional ownership and resources

The plan also does little in terms of driving forward progress in NHS care and research through institutional ownership; the Centre of Excellence we and others called for was not included. Ultimately, between this and a lack of resources to implement the plan, the government’s claim that it will ‘transform’ care is feeling somewhat hollow. While the plan was billed as stepping up training on ME, these ambitions were not backed by financial investment, with actions in this area largely revolving around an optional NHS e-learning.

6. We wanted a plan with clear targets and accountability

Finally, while we’d called for a plan with measurable targets in each of its focus areas, SMART metrics are thin on the ground. The fact we can’t measure progress against the plan’s ambitions will make it difficult to assess whether they are being achieved.

The one sliver of light is that DHSC intends to continue to convene the Task and Finish Group, which #ThereForME is part of, to assess progress in implementing the plan. This will include a new sub-group for health services, which we’ve requested to join. In her foreword, Health Minister Ashley Dalton wrote:

“I and the department, as well as other parts of government and the NHS, are happy to be held to account by the ME/CFS community.”

We look forward to holding Dalton to her word.

The Final Delivery Plan in the media

We were encouraged by the media response to the publication of the Final Delivery Plan. A number of brilliant voices from within the ME community are helping to construct a new public narrative about the condition. They speak with clarity and urgency about the realities of ME.

Changing how ME is understood, by both the public and policymakers, is essential for achieving meaningful, lasting reform.

Channel 4 aired a dedicated segment featuring #ThereForME Ambassador Dr Binita Kane, Nick Benton (a guest author), Nick’s father David, and former Health Secretary Sajid Javid. Nick and David shared their experience of living with Severe ME. David said:

“We didn’t see his eyes for over a year. It’s like dealing with someone almost in a coma.”

The segment raised serious concerns about the absence of specialist services and the persistence of debunked approaches, including Graded Exercise Therapy.

Binita also featured on a BBC Breakfast segment, alongside Sarah Boothby (mother of Maeve Boothby O’Neill). Sarah shared:

“I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”

Binita warned:

“There are no commissioned services [in the NHS], so clinicians can’t practise this medicine within it. That forces both doctors and patients into the private sector. If Maeve were still alive now, this plan wouldn’t have changed anything - and that will be very disappointing to people.”

Later in the day, Sarah Boothby spoke to BBC Radio 5 Live, where she criticised the plan’s inability to address systemic failings:

“The inquest found in its preparation that there is no expertise anywhere within the NHS - and this plan is not going to provide any.”

Sean O’Neill, Maeve’s father and reporter at The Times, published a searing commentary on the Delivery Plan titled “A plan without any actual plan”. In a Times Radio interview, Sean explained:

“I’ve never seen a plan that lacks detail quite like this. I don’t think you could really call it a plan at all - it’s a kind of wish list.”

Elsewhere, our very own Karen was quoted in a Times article on the Delivery Plan, where she highlighted the human lives at the heart of the plan:

“This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.”

Karen also spoke to BBC Radio 4’s The World at One about her husband James’ experience:

“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is, and for there to be basically no specialist NHS services to provide any kind of support.”

Later in the week, the ME Association’s Dr Charles Shepherd and #MEAction Scotland’s Janet Sylvester spoke to BBC Radio Scotland, where they underlined the lack of clinical expertise in the NHS and the urgent need for staff training, especially for those dealing with Severe ME.

A huge thank you as ever to Adam of @ABrokenBattery for recording these clips and uploading them for us all to see and share!

Why the Delivery Plan matters

The plan’s failure to propose concrete solutions matters because the systemic failures faced by people with ME have already had the most devastating consequences.

A recent Prevention of Future Deaths report in respect of the death of Sarah Jane Lewis concluded that she died after enduring prolonged and severe suffering from ME, without access to the specialist care and support she needed. This is the second Prevention of Future Deaths report issued in the past year relating to Severe ME. SJ’s story - and indeed the report’s findings - echoes that of Maeve Boothby O’Neill, whose inquest last year also exposed the consequences of institutional neglect.

Right now, the ME community is calling attention to three people with Severe ME who are currently being treated in UK hospitals, with serious concerns expressed about their care.

• Dill in Leeds (petition here).

• Savannah in Lewisham (petition here)

• Karen in East Sussex (petition here).

In this context, it is astounding that the Delivery Plan leaves the commissioning of a specialist service for Very Severe ME “subject to funding” and with no timeline, roadmap, or urgency.

A short #ThereForME pause

Karen and Oonagh have just returned home from a sunny week in Exeter visiting Emma - a rare and much-appreciated chance for the three of us to spend time together in person. Most of the time we’re spread out across the country, keeping in touch over WhatsApp, so it was great to finally be in the same place.

We’re taking August off to pause, rest, and regroup. We’ll be back in September, ready to keep pushing for change.

Until then, thank you for being #ThereForME.