Myalgic Encephalomyelitis

Luke Evans Excerpts

Wednesday 19th November 2025 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

I try to take a positive outlook. The one thing the pandemic did was shine a spotlight on the likes of long covid and ME, and I know from my medical career how difficult that can be. I would like to thank Sajid Javid, who in 2022 announced the plan for ME, and I congratulate the Minister because she brought it to fruition on 22 July 2025. There are some similarities between the NHS 10-year plan and the ME plan: the ME delivery plan is fantastic, and a lot of people agree with it, but, importantly, there has been a lack of delivery. Action for ME has said:

“The Plan also lacks clear accountability structures with no mechanisms to measure impact or deadlines to hit. We are concerned that despite this well-meaning Plan being published, it will have no material impact on the historically stigmatised and ignored ME community. Action for ME wants to work with MPs, Ministers and Officials to improve its implementation.”

It went on to say that the delivery plan on ME/CFS fails to include a “strategic approach” to ME research. However, that was not the only group to say so; the ME Association said:

“There is no clear ambition or strategy to drive consistent implementation of the NICE guideline recommendations”

across ICBs. It went on to say:

“Severe and very severe ME receives minimal attention, despite known risks during hospital admissions”.

It also said:

“Several of the Plan’s own deadlines have already passed, and it is unclear what progress has been made.”

In the short time that I have, I want to focus my questions on two areas: action and accountability. The first concerns the questions that those living with ME will have, particularly when it comes to the changes around the Department for Work and Pensions and what that will look like in the light of the imminent Timms review. I would be grateful to understand what plans the Government have for both Departments to discuss what this will look like, given the scale of the problems facing the 400,000-plus people with ME/CFS in this country.

Secondly, turning to the actual plan, we need to look at what actions will be delivered. I am keen to look at the section called “After publication of the FDP”, because it goes on to say that

“we will monitor the actions included in it. The DHSC secretariat will continue to engage with the Task and Finish Group in an appropriate form as required”.

Given the debate today, is that required, and what form will it take?

The document also goes on to say that a

“sub-group will be created to focus on improving care for those with ME/CFS.”

Has that group been created, and how many times has it met? It further states:

“We recognise the needs of those with ME/CFS and we remain dedicated to developing our approach as new research emerges and as we seek further engagement.”

Could I press the Minister on what that engagement is? Who is it with, and what does it look like? At the end of the day, there is a plan here and we do agree with it, but it is the actions and accountability within it that are truly going to make a difference.

ME may challenge the body, but it never diminishes a person’s worth or their hope that they carry. That is critical. When we have such a great plan, it is the action that is going to take it forward.

--- Later in debate ---

[Ashley Dalton]

I recognise my hon. Friend’s points, and I will cover some of them in my remarks. She will be aware that the women’s health strategy is currently being refreshed, so we hope to dovetail wherever possible.

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.

[Dr Luke Evans]

The Minister attended the task and finish group, as did I. Will it meet again to consider that?

[Ashley Dalton]

I will come to the task and finish group in my remarks.

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.

[Dr Evans]

Given that NHS England is due to be abolished, who will take that on?

[Ashley Dalton]

While NHSE is in the process of being dismantled, all its functions continue, and the new Department of Health and Social Care will continue all its work. None of that is being got rid of; it is simply being brought together into a more efficient, new Department of Health and Social Care. The Department will continue to meet a group of key stakeholders to move the work forward on mild and moderate ME/CFS in the coming weeks. Additionally, I confirm that the DHSC has already started conversations with NHS England to explore a specialised service prescribed by the Secretary of State for Health and Social Care for severe ME/CFS. That work will continue.

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.