Myalgic Encephalomyelitis

Tessa Munt Excerpts

Wednesday 19th November 2025 Westminster Hall

[Tessa Munt (Wells and Mendip Hills) (LD)]

I beg to move,

That this House has considered Government support for people with myalgic encephalomyelitis.

It is a pleasure to serve under your chairship, Mr Mundell. Myalgic encephalomyelitis is a complex, chronic condition affecting multiple body systems. There is currently no cure or established treatment. The symptoms of ME go far beyond chronic fatigue or being very tired; the sickest patients lie alone in darkened rooms, sometimes unable to move or to speak—or, in the very worst cases, to swallow or to digest food. Even at the mildest end of this condition, people with ME who once had lives, hopes and dreams for the future live a shadow of their former lives.

More than five years on from the start of the covid pandemic, it is timely to note how the numbers affected have increased. Approximately half of those with long covid go on to meet the diagnostic criteria for ME, so it is now estimated that 1.35 million people live with ME or ME-like symptoms. That includes healthcare workers, teachers and other key workers who kept our country running at the height of the pandemic. Add in carers, and even more are directly affected.

Importantly, there is a gendered dimension, with women five times more likely than men to develop ME. 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.

[Cameron Thomas (Tewkesbury) (LD)]

I thank my hon. Friend for giving way, and for securing this important debate. According to at least one survey, about 66% of sufferers require some form of social care and, as is the case for some of my constituents, it is their own families who put their life on hold to provide that care. Will my hon. Friend join me in stating that this is just one example of how the Government must address social care if they are going to get health and social care right?

[Tessa Munt]

I could not agree more. For far too long, patients have been dismissed, and that care element is incredibly important, because it affects so many people.

In July, the Department of Health and Social Care published the final delivery plan for ME, a cross-Government strategy aiming to improve attitudes, bolster research and better lives. It 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.

[Wendy Chamberlain (North East Fife) (LD)]

I am interested in what my hon. Friend says about plans in England, because in my constituency we were privileged to have an incredible ME specialist nurse, Keith Anderson, who helped countless people. Sadly, he passed away two years ago, and since then there has been no specialist support in Fife—indeed, there is no specialist ME doctor or nurse in the whole of Scotland. Does my hon. Friend agree that one of the things any plan needs to consider is training, so that, no matter where someone is in the country, they can get access to a specialist?

[Tessa Munt]

I agree. In fact, we do not just need specialists; we also need training for GPs and other healthcare workers.

I will highlight four areas in which we need to see much more from the Government going forward. Given the gravity of the situation, I would appreciate it if the Minister could arrange for written responses to a number of my points.

The first area is funding. If the delivery plan felt threadbare, that is because no substantive new funding was attached to it. Before the plan was published, all 72 Lib Dem MPs signed a letter expressing our concerns about the anticipated lack of funding, which of course came to pass. To put it bluntly, what patients need is transformed NHS care and a step change in research. Neither is likely to happen without investing some money.

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. We know that one in five working-age adults are out of the workforce, many because of health problems, yet remarkably there was no modelling of the demography of those living with ME for the delivery plan exercise, and neither the Department of Health and Social Care nor the Department for Work and Pensions has an estimate of what the neglect of people with ME is costing our economy.

I would like to look at some of the figures. The most recent estimate of the economic impact of ME was for 2014-15—10 years ago—and was carried out by 20/20health. The cost was then calculated 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. Surely it is time for the Government properly to cost the impact of a condition that affects so many, rather than brush it under the carpet, and to invest accordingly.

[Andrew George (St Ives) (LD)]

My hon. Friend is making a very strong case. She will be aware that there is still significant uncertainty among many clinicians as to whether this should be treated a medical rather than a psychological condition. Does she agree that, because of the gravity and extent of cases around the country, it is important that medical services are supported to deal with those patients and their symptoms?

[Tessa Munt]

I accept my hon. Friend’s point. Most people I speak to say that ME has nothing to do with psychiatry. We now have evidence from Edinburgh, which I will go on to in a moment, to explain exactly why that is the case.

Our counterparts in Germany have grasped the importance and scale of the challenge. Just last week, the German Government announced a national decade against post-infectious diseases, with a particular focus on ME and long covid. In Germany, an estimated 1.5 million people are living with ME or long covid. The German Government have rightly recognised post-infectious diseases such as ME as one of the greatest public health challenges of the 21st century. Last week, they committed €500 million—around £440 million—over the next decade into research to understand the causes of post-infectious diseases and to develop treatments.

Will the Minister confirm whether Ministers in the Department of Health and Social Care have discussed that recent funding announcement and the logic behind it? 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?

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady on bringing this debate forward. In Northern Ireland, the figures for ME have unfortunately risen from 7,500 to 12,500 in the past few years. We have no clinical lead, no specialist services and no commission care pathways. We need research. Queen’s University Belfast is really good with research partnerships. Does the hon. Lady agree we should spend the money on research and find the cure? It has been said that the cure for cancer will come in 10 years’ time. The cure for ME could come too if research money were put into it.

[Tessa Munt]

I absolutely agree, and I thank the hon. Gentleman. The second area where I would urge the Government to go further is support for people with severe and very severe ME. It is estimated that around one in four people with ME are severely affected. ME is perhaps the only condition where the sicker someone becomes, the less care they receive from the NHS. The recent prevention of future deaths report focused on the tragic case of Maeve Boothby O’Neill, describing NHS care for severe ME as “non-existent”.

In my work on this issue, I have collaborated closely with #ThereForME, a campaign founded by two women, Karen and Emma, who are carers to partners with very severe ME. It can be difficult to comprehend the depth of suffering that ME can bring in its most extreme forms. With his permission, Karen has shared details with me about of her husband James’s day-to-day life.

Before developing ME, James, in his 30s, lived a full life and was a civil servant. Today he is completely bed-bound and spends 99% of his day alone in a dark room, unable to tolerate any noise, light or stimulation. He is hardly able to communicate and is so sensitive to touch that, despite his suffering, his wife Karen is unable to give him a hug or hold his hand. Despite an acute level of need, James is receiving next to no care from the NHS. Karen tells me that her biggest fear is that he deteriorates to the point of needing lifesaving care. She cannot feel confident that the NHS will provide it.

[Mark Sewards (Leeds South West and Morley) (Lab)]

The hon. Member is making an incredibly powerful speech. One of my constituents, an NHS nurse, suffers with ME. He cannot play with his children, walk his dog or undertake basic activities. When he went to the NHS, he got a referral, but was told that it would be nine months before he got an appointment, which forced him to consider private options. An NHS nurse is having to use private healthcare to get results—this situation is untenable, is it not?

[Tessa Munt]

It is not only untenable, but completely absurd. In September 2024, on World Patient Safety Day, over 200 healthcare workers were so concerned about NHS care for ME, and particularly care for severe and very severe ME, that they wrote a letter to the Health Secretary calling for immediate action to save lives. That letter was sent 14 months ago. I am sorry to say that very little has changed since, and they did not receive a response.

[Jayne Kirkham (Truro and Falmouth) (Lab/Co-op)]

I want to quickly mention one of those 25% of people with ME who are severely affected: my constituent Alice. She cannot leave her room, and is scared to call for treatment in case she has to go into hospital: she has been into hospital twice, but people there are not sure how to treat her and they make it worse. I simply want to empathise on behalf of my constituents, one of whom is one of the very severe cases the hon. Lady is talking about.

[Tessa Munt]

Probably most of us have constituents in exactly the same situation. In just over a year, 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; the other was on the case of Sarah Lewis. Neither report has yet resulted in satisfactory action. The risk of death, specifically from malnutrition, is real and ongoing.

Earlier today I spoke with Dr Binita Kane, a private sector clinician with a special interest in ME and long covid. She told me about the case of a 25-year-old woman, a medical student, who developed severe ME after a viral infection in 2018. The young woman has been in an acute NHS hospital for 17 months with nutritional failure and has deteriorated to the point that palliative care is being instituted. Her family is being prepared for the worst—it is dreadful. She has been disadvantaged not because of the individual clinical decisions, but because she suffers from a condition for which there is no safe or established service model. There have been multiple missed opportunities to prevent her condition progressing to this stage.

Sadly, that young woman is not alone. I have heard of many other cases today, and before today. What is being done to help patients like her? In the foreword to the final delivery plan, the Minister stated that

“tragically avoidable deaths of people with ME/CFS, in England…must become never events.”

However, the plan does not clearly set out what actions the Department will take to guarantee patient safety. No one is being held to account. The plan committed 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”.

I hope that the Secretary of State will do the right thing and commission that service, but it is frankly astonishing that the option of leaving this group of patients without specialist NHS care, as they are now, is even on the table.

I ask the Minister to clarify what progress has been made in commissioning such a service. That is not to mention that developing a new service from the ground up 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? I ask the Minister to commit to work with groups such as #ThereForME to rectify the situation immediately, for example by convening a national advisory group to advise in these cases and by undertaking a full review of the lessons learned from ME deaths. Will the Minister clarify what data is being collected to better understand the number of those with ME who are affected by life-threatening complications?

The third area on which I would like to see the Government do much more is accelerating ME research. I spoke earlier about the need for investment in research and improving healthcare. For many patients, biomedical research represents their 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.

[Carla Lockhart (Upper Bann) (DUP)]

Will the hon. Lady give way?

[Tessa Munt]

Forgive me, but I am going to carry on.

The final delivery plan rightly points to the need to build capacity in ME research, given the small UK research community and very few funded research projects. The University of Edinburgh’s DecodeME project has been a notable exception, recently reporting groundbreaking findings that revealed distinct genetic signals in people living with ME—medical, not psychological. This gives us a solid and compelling foundation for future research. Can the Minister explain what plans are in place for future funding to capitalise on this research? Again, the delivery plan is light on actions to build UK capacity in any research. A consensus recommendation for a post-infectious disease research hub was not funded.

A joint showcase event was held earlier this month by the National Institute for Health and Care Research and the Medical Research Council, with the goal of stimulating research, yet it is not clear whether this will yield tangible results or how its outcomes will be monitored. Again, I ask the Minister what the plan is if, as seems possible, it is not a lack of information holding back capacity, but secure long-term finance to encourage researchers to build a career in the field.

The final delivery plan gestured to 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?

The fourth and final point on which I would like the Government to go further is support from wider Departments, particularly the Department for Education and the Department for Work and Pensions. Children and young people are uniquely affected by ME. 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. Can the Minister outline what engagement has taken place so far and commit to speaking with colleagues in the Department for Education to ensure that they will engage with the delivery plan moving forward and ensure that children and young people with ME receive appropriate accommodations?

Meanwhile, welfare benefits are the most common issue that constituents with ME raise with me. Many have struggled for years to access the benefits they are entitled to, feeling that they are fighting a system that works against them. Like most people living with disabilities, my constituents are terrified at the prospect of future welfare reforms and losing the support that they have and rely on to meet their basic needs.

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 multisystemic 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.”

I am particularly concerned about the proposals to replace the new-style employment and support allowance with a time-limited unemployment insurance and to abolish the work capability assessment. Replacing the new-style ESA would disproportionately harm individuals who are not eligible for means-tested support, for example because their partner works. Among other harms, that would increase the risk of domestic abuse while heightening financial dependence—a particularly pressing concern, given that ME is considerably more prevalent in women.

Abolishing the work capability assessment removes critical safeguards in regulations 29 and 35 of the Employment and Support Allowance Regulations 2013 for those whose health would be seriously harmed by work or work-related activity. Those protections are vital for people with ME, who are at particular risk of harm and long-term health consequences if they push beyond their energy limits.

Time prevents me from providing more detail, but I will conclude my observations by saying that, on the whole, what people with ME want most is to recover their capacity to contribute to their families, their community and wider society. They hate being ill. An appropriate benefits system must acknowledge that and treat them with dignity and fairness. The way to get people with ME and those caring for them back into work is not to take away crucial support, but to invest in helping them to get better.

Many will be watching this debate from home, desperately hoping that we are doing everything we can to build them a better future. They deserve the assurance that the Government are committed to a clear, ambitious and, crucially, properly funded vision for change across healthcare, research and all forms of Government support. I ask the Minister for a meeting to discuss myalgic encephalomyelitis and the way forward for the 1.35 million people affected. I very much hope that today’s debate represents a big step forward in delivering that for them.

[Several hon. Members rose—]

--- Later in debate ---

[Tessa Munt]

Thank you, Mr Mundell, but I have little to say. I am delighted to hear what the Minister had to say, and I will be holding her feet to the fire. I wish to continue this campaign, and I will work with others on it. One of the things I omitted to say at the beginning was that I am a member of the APPG on ME. I should have declared that, so I seek your forgiveness for not having said so.

I am delighted by a number of the things that the Minister has been able to say. I thank everyone who contributed to the debate—I should probably have asked for a two or three-hour debate. In particular, I point to a phrase of the former Secretary of State, the right hon. Member for Godalming and Ash (Sir Jeremy Hunt), about digging for treasure, I think. It is so moving to have heard so many important stories of people who are suffering. We really have to do something about this.