Despite the devastating toll of the condition, people with ME have endured decades of substandard and sometimes downright unsafe healthcare, with pitifully little funding for research. In spite of the lack of robust evidence to this effect, ME is treated as though the condition is psychiatric.
Tessa Munt MP
A Westminster Hall debate was held on 19th November 2025 at the behest of Tessa Munt MP entitled ‘Government support for people with myalgic encephalomyelitis’. This not the first such debate as one was held on 1st May 2024 on the topic ‘“That this House has considered World ME Day’. In general, these non-contentious events allow MPs an opportunity to raise local or national issues and to receive a response from a government minister. The forum can be useful to facilitate political discourse as well as gauging likely supporters for a topic, and to highlight areas of common concern. Debate outcomes and motions, however, have no legislative effect. All MPs can access a debate pack from the Commons Library which provides (very) basic information on ME/CFS.
Scheduled to last an hour the debate (transcript) raised a number of salient points with notable contributions from many MPs who raised examples of real life experiences of their constituents. The debate’s salient points are most simply encapsulated in a series of quotes.
Tessa Munt MP explained the current situation to MPs by stating that approximately half of those with long – COVID could progress to meet the diagnostic criteria for ME, and so it is now estimated that 1.35 million people live with ME or ME-like symptoms in the UK.
As for the Delivery Plan, Ms Munt commented that the cross-Government strategy aimed to improve attitudes, bolster research and better lives and, indeed, included some positive steps: new small grants for research into repurposed medications, and the development of a new service specification for mild and moderate ME. “However, overall, the consensus of the charities and patient advocates I have spoken to is clear: the delivery plan falls far short of what was needed.”
She laid out four areas for action
- Funding.
“If the delivery plan felt threadbare, that is because no substantive new funding was attached to it.”
On an economic basis, MPs heard that the most recent estimate of the economic impact of ME was for 2014-15 (a decade ago) carried out by 20/20 health with the economic cost estimated at £3.3 billion annually, based on only 260,000 people living with ME. With many more affected following the pandemic and a decade of inflation, that cost will now be much higher. “Even the most conservative estimate of current numbers living with ME, excluding cases linked to long covid, puts them at 404,000 patients. Does the Minister accept, using that conservative estimate and adjusting for inflation, the annual economic impact of ME today is likely to be at least £7 billion? If those living with ME-like symptoms following covid are included, we could be approaching an annual cost of £20 billion.”
“The case for investment is clear. I urge the Minister to see this not as a sunk cost, but as an investment in a group of people who are desperate to contribute to society.”
She continued by highlighting the recent announcement by the German government of €500 million— around £440 million —over the next decade into research to understand the causes of post-infectious diseases and to develop treatments and challenged Ministers in saying “I would love nothing more than to see the UK Government come up with a comparable level of commitment — or will the Government wait a decade for the German Government’s conclusions before taking action?” - Support for people with severe and very severe ME.
Ms Munt highlighted that it is estimated that around one in four people with ME are severely affected. two prevention of future deaths reports have been issued related to severe ME. I have already referred to one of them, regarding the case of Maeve Boothby O’Neill and Sarah Lewis yet “Neither report has yet resulted in satisfactory action. The risk of death, specifically from malnutrition, is real and ongoing.”
“ME is perhaps the only condition where the sicker someone becomes, the less care they receive from the NHS.”
Reverting to the Delivery Plan she highlighted that it does not clearly set out what actions the Department for Health and Social Care will take to guarantee patient safety. It charged the DHSC and NHS England to “explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS” asked the Minister to clarify what progress has been made in commissioning such a service. Developing a new service from the ground up , she stated, is, “at best, a medium-term solution. It may take years. It is astonishing that no interim solution has been proposed to ensure that patients with very severe ME, whose lives are at risk right now across the country, do not become tomorrow’s mortality statistics. How many more preventable deaths will it take?” - Accelerating ME research.
Ms Mund correctly identified that for many people affected by ME/CFS, biomedical research represents the best hope of regaining their former life, yet the condition has historically received very low levels of research funding from the UK Government.
“Based on parliamentary answers and official announcements, I estimate that around £10 million has been invested in ME research over the past 12 years. To put that figure into context, on the current numbers that is about 60p per person living with ME per year. Four times as much was spent on a helicopter for the former Prime Minister as has been spent on ME. We spent £125 million—12 times as much—on a bat tunnel for HS2. We spent £10 billion—about 1,000 times as much—on personal protective equipment that turned out to be unusable. Money talks, and the record of the past decade makes it clear to people with ME that their collective futures have been valued by successive Governments at astonishingly little.”
“On the need to build capacity in research, the work of deCODE ME was highlighted with the much-heralded initiatives in the Delivery Plan being dismissed – “HERITAGE and PRIME, which were effectively pre-existing funding announcements. The only genuinely new funding announced through the plan from the National Institute for Health and Care Research for research into repurposed therapies was capped to grants of £200,000. The Government’s response on this issue, including in the letter sent in response to concerns raised by the 72 Lib Dem MPs, tends to be that it is not usual practice to ringfence funds for specific conditions, and that researchers can apply for funding in open competition. Yet historical funding imbalances mean that it is not realistic to expect ME researchers to compete with researchers of diseases that benefit from more advanced research and much stronger institutional capacity.”
“The UK Government do, in fact, set aside funding for specific conditions when they are considered a strategic priority. Just this June, £50 million of funding was announced for cardiovascular disease research to be awarded through open competition. In 2021, £50 million was committed to research into motor neurone disease. If we can award ringfenced funding through open competition for those conditions, why not ME? To echo a question asked at a recent research showcase event, why is ME not considered a strategic research priority? Can the Minister clarify that?”. - Support for wider Departments, particularly the Department for Education and the Department for Work and Pensions especially when dealing with the unique challenges faced by children and young people.
“The condition disrupts and can derail key life stages and developmental milestones. Among educational professions, poor understanding of ME contributes to a lack of adjustments, limiting access to education and increasing school absences. The final delivery plan acknowledges the need for access to education and improved life chances among children and young people with ME, but while this is in theory a cross-Government plan, engagement from the Department for Education seems to have been extremely limited.”
As for benefits generally “Looking at the current situation, I am indebted to a benefits adviser focusing on ME for her summary.
“People with ME face intersectional and compounding barriers when interacting with the Department for Work and Pensions (DWP). These include structural flaws in benefit design, widespread misunderstanding of their conditions, systemic disbelief, inaccessible systems, poor-quality assessment practices, and the cumulative harm of being required to repeatedly prove their illness. The current benefit system and emerging reform agenda both fail to reflect the fluctuating, energy-limiting multi-systemic nature of these conditions.
And then, the Universal Credit Act 2025, together with the proposed abolition of the Work Capacity Assessment (WCA) and on-going threats to PIP eligibility, signals a fundamental shift in how disabled people meet entitlement to financial support.”
The Government’s response was provided by The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I want to set out the steps that this Government are taking to change the misunderstanding, stigma and inconsistent care that patients have experienced. Through our ME/CFS final delivery plan, we will deliver better care, boost research and ensure that every person living with ME/CFS is treated with dignity and compassion.
First, let us acknowledge the reality. ME/CFS is a complex multi-system condition. Its fluctuating nature makes diagnosis and management challenging. Historically, services have been extremely varied, and in some cases patients have felt dismissed or rejected by the healthcare system. That is unacceptable. We have heard those concerns loud and clear through our extensive consultation on the interim delivery plan and through ongoing engagement with patients, carers, clinicians, researchers and charities. Last year’s prevention of future deaths report following the tragic death of Maeve Boothby O’Neill further highlighted the urgent need for reform, pointing to a lack of specialist beds and inadequate training for clinicians. We cannot and will not allow such failings to continue.
In July, we published the ME/CFS final delivery plan, marking a significant milestone in our commitment to improving lives. The plan is built around three core themes: boosting research, improving attitudes and education, and enhancing care and support. With a clear commitment to ensure that people with ME/CFS can live as independently as possible and see their overall quality of life enhanced, that plan will help us to take an important step towards achieving that, but we acknowledge that there is more to do. We will continue to build on the foundation of those actions well beyond the publication of the plan. It is the springboard—the beginning, not the end.
Although the final delivery plan does not include every suggestion received through the consultation responses or through the task and finish group, it does not mean that those proposals will not be considered in the future, subject to resource and funding. We look forward to continuing those conversations.
Research is the key to unlocking better treatments and improving quality of life. As has been mentioned, we have seen progress through projects such as DecodeME, the world’s largest genetic study of ME/CFS, which is funded by the National Institute for Health and Care Research and the Medical Research Council. Preliminary findings from the study indicate genetic differences in eight areas linked to the immune and nervous systems in people with ME/CFS. That discovery of specific genetic signals may help us to understand the biological pathways involved in ME/CFS in the future.
However, we need to go further. That is why the plan includes a funding offer and a commitment to continue working with researchers, industry and patient groups. New awards announced this year include funding for repurposed treatments and £845,000 for a large infrastructure project called PRIME, or, to give it its full name, Building Infrastructure for Patients, Researchers and Industry for ME/CFS.
Together with the MRC, we are actively exploring next steps in ME/CFS research. For example, earlier this month we co-hosted the research showcase event for post-acute infection conditions, including ME/CFS. It brought together people with lived experience, researchers, clinicians and funders to help to stimulate further research in this field. We are now considering the discussions that took place at the showcase to explore the next steps to stimulate further research. The output of that event will be circulated as soon as possible.
The final delivery plan also sets out actions to improve access to specialist services—to provide better support for children and young people, and their families, and to address employment challenges. It aligns with our 10-year health plan, which includes the roll-out of neighbourhood health services, bringing care closer to home and ensuring that multidisciplinary teams can support people with complex conditions such as ME/CFS.
Provision varies across the country and we are determined to reduce those inequalities. The final delivery plan includes actions to improve service mapping and workforce training so that every patient, regardless of postcode, can access the care they need. NHS England is working closely with the Department to support ICBs in commissioning equitable evidence-based services. Two of the most important actions in the plan are focused on NHS services. NHS England has already started its work on co-designing resources for systems to improve services for mild and moderate ME/CFS.
Changing attitudes is as important as changing services to many people with ME/CFS who have faced disbelief or stigma. As outlined in the plan, we will address that by launching a public awareness initiative to improve understanding of the condition and the support available. We will work with schools, employers and social care providers to ensure that children and adults with ME/CFS receive the information and support that they need.
To support healthcare professionals in diagnosis, as set out in the final delivery plan, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for all healthcare professionals. The aim is to support staff so that they can provide better care and improve patient outcomes.The plan was not developed in isolation. It reflects thousands of consultation responses and the input of the cross-sector task and finish groups. We repurposed the task and finish groups into a new post-publication stakeholder engagement group, and we look forward to working closely with it during the all-important implementation phase.
I recognise that some stakeholders feel that the plan does not go far enough, but let me be clear: this is not the end of the journey; this is simply the foundations. Our work does not stand alone; it stands on the broader ambition to transform the NHS from a sickness service into a health service. We are working with the DWP and the Department for Education to ensure that all the issues raised are considered, in particular during the Timms review.
ME/CFS has been overlooked for far too long. We are determined to change that. To everyone living with ME/CFS and to your families and carers, I say this: we hear you; we value you; we believe you; and we are committed to making the system work better for you and with you. Together, we can build a future where everyone receives the care, respect and support that they deserve.
