Myalgic Encephalomyelitis

Carla Lockhart Excerpts

Wednesday 19th November 2025 Westminster Hall

[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.