Parliamentary Debate on ME/CFS: ‘I will hold the minister’s feet to the fire’ MP Tessa Munt

Read the response to the debate from Ashley Dalton, Parliamentary Under-Secretary of State for Health and Social Care:

“I congratulate the hon. Member for Wells and Mendip Hills (Tessa Munt) on securing this debate and pay tribute to her for her continued advocacy on behalf of people living with myalgic encephalomyelitis. Her work has ensured that the voices of those affected are heard at the highest levels of Government, and I am happy to accept her invitation to meet her and stakeholders, and the invitation from my hon. friend the Member for Leigh and Atherton (Jo Platt), the chair of the APPG.

“I thank all hon. Members who have contributed today, and I particularly acknowledge all the constituents they have referred to. They all deserve the very best care from our NHS. I will endeavour to respond to as many of the issues raised as I possibly can. If I have not covered something, my officials will take notes and follow up in writing.

“Myalgic encephalomyelitis—better known as ME—and chronic fatigue syndrome, which I will refer to from now on as ME/CFS, is a condition that affects an estimated 390,000 people in the UK. Its symptoms can be profoundly debilitating, impacting every aspect of daily life, from work and education to family and social life.

“For those with severe or very severe ME/CFS, even basic tasks such as sitting up, eating or speaking can become impossible. We recognise the devastating impact this condition has on individuals and families. For too long, people with ME/CFS have faced stigma, misunderstanding, disbelief and inconsistent care.

“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.

“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.

“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.”