No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition. What has the delivery plan really changed for people with myalgic encephalomyelitis in the United Kingdom?
July marks the first anniversary of the publication of the U.K. government’s delivery plan, outlining how it promises to better serve people with myalgic encephalomyelitis (ME). Sadly, it is not one to celebrate. So far, the plan has failed to meaningfully improve care, research, or professional understanding of the disease. It reveals that only an avalanche of political support will force real change for people with ME.
It’s no surprise that the ME community greeted the final delivery plan (FDP) with dismay. I’ve had cognitive dysfunction from ME for over five years, so reading often feels like driving a car with the handbrake on. But synthesizing the FDP was like trying to do so uphill. The actionable commitments — those with funding, timelines, and accountability attached — are few. And to make it worse, they are buried within a sea of vague, nonbinding pledges, broader government policy actions, and hollow acknowledgments of patient experiences.
The FDP laid out three focus areas: “research,” “attitudes and education,” and “living with ME/CFS.” Each had a flagship element. For research, this was an unspecified number of research grants for repurposed medications valued at £200,000 ($270,000) each, far from the £100 million a year ($135 million) that the campaign group #ThereForME had called for. In the U.S., ME advocates have called for $50 million for an ME “roadmap,” and people with Long COVID have demanded billions per year for the disease.
The U.K. plan acknowledges that the research grants are enough only to “help researchers prepare for a larger, more advanced study.” However, it does not commit to funding any such study, making it difficult to see how this could have a major impact.
In May 2026, the U.K. government provided £4.75 million ($6.3 million) for the SequenceME & Long COVID study, which will sequence the genomes of 6,000 people with ME. A government press release describes this investment as “building on” the delivery plan. Although welcome, it has still not committed to providing the consistent, ring-fenced funding necessary to build real momentum.
For the second focus area, “attitudes and education,” National Health Service (NHS) England developed four e-learning modules designed to educate healthcare providers about ME, two of which focused on severe ME. Despite advocates’ calls to make them mandatory for health professionals, the NHS made them optional when it published them in 2024 and 2025.
A recent Freedom of Information request by a patient-advocate revealed that fewer than 400 NHS professionals had accessed the educational resources. There are more than 150,000 doctors and 360,000 nurses working in the NHS in England alone. Knowing how little importance doctors generally place on ME, expecting them to complete the modules voluntarily was, to put it mildly, optimistic.
For the third focus area, “living with ME/CFS,” advocates hoped to see the NHS establish a specialized service for those with very severe ME. In the foreword to the plan, Ashley Dalton, then parliamentary under-secretary of state for public health and prevention, committed to making avoidable deaths from ME “never events.” This was a rare statement that, at least rhetorically, provided a basis for holding the government to account.
But in March, nine months after publication, the government announced it would postpone discussions about this proposed specialized service until at least April 2027. Since the death of Maeve Boothby O’Neill in 2021 after three unsuccessful hospital admissions, cases have continued to emerge that raise questions about the safety of NHS care for hospitalized ME patients. These include Alice Barrett, Millie McAinsh, Carla Naoum, and Savannah Victora-May. Until the NHS establishes clear, adequate protocols around this, there will be more crisis cases, and another preventable death remains a risk. At a minimum, the plan could have put forward measures to prevent the NHS from potentially making things worse for these patients in the short term.
Until the NHS establishes clear, adequate protocols around this, there will be more crisis cases, and another preventable death remains a risk.
It is right that the needs of those with very severe ME are at the forefront of both the delivery plan and ME advocacy. However, NHS care across all severities of the condition requires major improvement, not least because it sometimes leads to people becoming very severe. This is reflected in the experience of Annalise Stubbs, 23, who developed moderate ME in late 2021.
Stubbs’s local NHS Long COVID clinic did not offer remote appointments, forcing her to attend in person. She knew traveling made her ill but thought it was worth it to get some help. However, the staff recommended only breathing techniques and yoga, which she and her father felt was patronizing and tokenistic. At no point did they advise her on pacing, the cornerstone of managing ME.
After a lengthy wait to see a neurologist, he asked Stubbs, “What’s the wheelchair for?” When she explained she could not have walked from the car, he made an incredulous face. He then told her she needed to overcome her “fear of exercise” and suggested antidepressants.
“Imagine how crushed Annalise was after,” said her dad. “This is what we’d been waiting for for two years.”
In April 2024, Stubbs became bedbound after an attempt to shower triggered a major crash. She remains barely able to speak and requires round-the-clock care from her dad, while the NHS is providing her with no specialist care.
My experience echoes Stubbs’s. I developed mild ME in 2020 and also saw my local NHS Long COVID clinic. Over the phone, an occupational therapist I had never met advised me to increase my activity, starting by sitting outside for several minutes longer each day. I was already crashing weekly by then, so in hindsight, trying to do more was ill-advised.
Eventually, in 2022, a major crash left me bedbound, which lasted 18 months. By then, I had sought help from numerous separate NHS specialist services (ME, Long COVID, psychological medicine, and neurology), and none had advised me on pacing either. Could pacing have prevented Stubbs and me from becoming very severe? Why is the NHS still failing to prescribe it? And how many others has this happened to?
Could pacing have prevented Stubbs and me from becoming very severe? Why is the NHS still failing to prescribe it? And how many others has this happened to?
Within the plan, the government and NHS committed to creating a “template service specification” to fundamentally improve NHS care for mild and moderate ME patients. It aims to increase access to local ME clinics, encourage use of the 2021 NICE guidelines, and move care from hospitals into the community. When this template is published, it must ensure that the relevant services provide basic pacing advice to all patients.
The delivery plan has revealed that the current level of political attention to ME is insufficient to drive meaningful change. The U.K. government faces tight fiscal circumstances, so only the top priorities receive serious attention and, crucially, funding.
People with ME have always had broad cross-party support — but to drive real change, we need sustained, large-scale political pressure. Members of parliament (MPs) can influence government policy in many ways. One way is via all-party parliamentary groups (APPGs), where MPs from all political parties examine or campaign on specific issues. These groups have no direct power over legislation but can indirectly influence policy. Other ways include parliamentary questions and letters to ministers. These could partly compensate for the plan’s lack of built-in accountability mechanisms.
Having more MPs advocating for ME is only part of the advocacy we need. Within that cohort, we need leaders who are relentless and unafraid to ruffle feathers. One example is Tessa Munt, a Liberal Democrat MP. She chairs the APPG on ME, secured and led a Westminster Hall debate on government support for ME in November 2025, and secured signatures from all 72 Lib Dem MPs on a letter urging the government to fund the delivery plan.
Speaking to The Sick Times over the phone from a corridor in the Houses of Parliament, Munt said the plan had suffered from a distinct lack of “ministerial push.” She spoke with urgency about the need to “carry on confronting” government ministers and said it would be a shame if ministers had to be “embarrassed” into doing the right thing. People with ME are easy for the government to ignore; MPs with this indefatigable attitude are not.
The real danger now is not just that the plan fails to deliver, but that we, the community, disengage. It’s easy to feel hopeless, but momentum is growing, both politically and scientifically. Bigger, more ambitious studies are happening. This includes DecodeME and its follow-up, SequenceME & Long COVID, along with Rosetta Stone.
Recent media coverage has been more frequent and sympathetic than in the past. More MPs are taking an interest. Long COVID has brought unprecedented attention to infection-associated chronic conditions. And importantly, the plan is not dead yet. Although delayed, the government has still committed to discussing whether to prescribe a specialized service for very severe ME. Sharon Hodgson, who replaced Ashley Dalton, has campaigned on ME for decades and may help push things forward. We must keep up the pressure.
Karen Hargrave, co-founder of the #ThereForME campaign, is part of a committee that informed the policymakers who developed the delivery plan. Like Munt, she stresses that the government needs to feel pressure to act, pointing out that governments act when it’s easier to do so than to ignore an issue.
Issues usually reach this critical mass “slowly, slowly, then all at once,” she said, “and what ME needs is that moment to come.”
To make that happen, we need more political firebrands fighting for the cause. I encourage all U.K. advocates and their allies to write to their MPs. Every letter builds momentum, and if we can get a couple more Tessa Munts on our side, that critical moment might come sooner.
Issues usually reach this critical mass “slowly, slowly, then all at once,” she said, “and what ME needs is that moment to come.”
Karen Hargrave, co-founder of #ThereforME
Nick Benton is a freelance writer based in Stockport, England. He has had ME since 2020 and writes about the condition on his Substack, The Personal ME. You can follow him on Instagram and Bluesky.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
More commentary articles
- The U.K.’s plan for ME has failed us. Members of parliament must step up.
- Work until you disappear: Long COVID ensnared me in an exploitative health system
- We must free Long COVID and the people living with it from the mind-body trap
- Research ethics boards need urgent training on Long COVID and myalgic encephalomyelitis
