Severe Myalgic Encephalomyelitis
House of Lords · Lords Chamber · 18 Jun 2026 · 10 speeches · Official Report
Question for Short Debate
Asked by
Baroness Scott of Needham Market
To ask His Majesty’s Government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis.
Baroness Scott of Needham Market
My Lords, I am grateful to have secured time for this debate on the treatment of and research into severe ME. I am particularly grateful to Action for ME, whose work with those living with ME and advocacy to improve care, treatment and understanding has been tireless. Someone very close to me has ME, and I know from our personal experience what so many other families know: that ME is not just a matter of policy documents, clinical pathways or departmental responsibilities; it is about lives changed beyond recognition. It is about people who were active, engaged, ambitious and full of plans who suddenly find that the most ordinary of tasks become impossible. ME is a complex, chronic and disabling condition that affects multiple systems in the body, characterised by debilitating fatigue that does not improve with rest, cognitive dysfunction, pain and hypersensitivity to light, sound and movement. Even the most minimal activity can cause a serious worsening of symptoms in some people. Around 1.35 million people in the UK are estimated to be living with ME, although the true number may well be higher because of underdiagnosis and limited research. Around one in four of those with ME are severely affected. To be clear, that means they are housebound or bedbound, unable to carry out daily independent activities and totally reliant on others for personal care. Those with very severe ME may have extreme symptoms and are dependent on full-time care. Many are unable to process or...
Lord McCrea of Magherafelt and Cookstown
My Lords, I want to make a very short intervention in this debate. I thank the noble Baroness, Lady Scott, for introducing a very important debate. As she pointed out, an estimated 1.25 million people across the United Kingdom are living with ME. Many of those are suffering severely affected and unable to carry out the daily activities which others take for granted and therefore require significant support with personal care. The level of care services is inconsistent across the United Kingdom, leaving those in need with major gaps in provision, causing serious deterioration in their personal well-being. I therefore join in asking the Minister whether she can tell the House what interim support will be provided for people with severe ME, bearing in mind the delay to the expiration of the nationally commissioned service until April 2027. ME remains significantly underresearched considering how prevalent it is within society. Therefore, can the Minister’s department take action to accelerate ME research, thereby gathering the necessary evidence base for better care? The dignity of many suffering from severe ME depends on appropriate services across the UK. I trust that this short debate highlights the importance of the issue, and I wholeheartedly support the noble Baroness, Lady Scott, in her debate today.
My Lords, I congratulate my noble friend Lady Scott of Needham Market on her very moving speech. She comprehensively covered the major issues that are before patients with ME. The prevention of future deaths report into the death of Maeve Boothby-O’Neill emphasised that there is no known cure into myalgic encephalomyelitis-not only no cure but no known cause, no known reason why some are susceptible to developing ME and no known reason why one in four sufferers develop severe problems. It was clear that despite three periods in hospital, the NHS was unable to reverse Maeve’s malnutrition and sadly she died. One might think that apart from lots more research into causes, prevention, diagnosis and effective treatment, there is nothing that can be done to care for sufferers appropriately. But there is. I note that in a recent survey by Action for ME, just 10.8% of respondents with severe or very severe ME said they felt supported by the NHS. I began to wonder what “good” looks like, so I looked at the NICE guidelines and there it was. But I recently heard from a carer of a patient with severe ME. She said: “There is almost no help available on the NHS for patients of this severity. We waited six months for an NHS specialist appointment. The consultation lasted 10 minutes over the phone. The consultant, whose primary speciality was diabetes, reviewed blood tests, said they were normal and suggested my partner take a multivitamin. The clinic was disbanded the following day due to...
My Lords, I thank the noble Baroness, Lady Scott, for securing this important debate. I join others in paying tribute to the patients, families, clinicians, researchers and charities who have worked tirelessly to improve understanding of myalgic encephalomyelitis. For too long, people living with this condition have faced scepticism and inadequate support. While significant challenges remain, it is right to acknowledge that progress has been made. There is now a much greater recognition that ME is a serious and often profoundly debilitating condition requiring appropriate clinical care and support. We on these Benches welcome the publication of the ME delivery plan in 2025. Many of the origins of that work lie in the commitments made by the previous Conservative Government in 2022 to develop a cross-government approach to ME. It is encouraging that the plan contains a broad range of actions across health services and educational research. We also welcome reports that a substantial number of those actions are complete or in progress. However, publication of a plan is only the beginning. What matters to patients is whether they experience tangible improvements in their daily lives. The plan contains 44 actions, but patients and charities have raised understandable concerns about how delivery will be monitored in practice, who will ultimately be accountable for implementation, and how responsibilities will be managed as NHS England functions transfer into the Department of...
My Lords, I am most grateful to the noble Baroness, Lady Scott, for securing this important debate, which matters so much to so many, and for her clear introduction to these matters. I am also grateful to all the other noble Lords who spoke for their thoughtful and probing insights. The debate has certainly underlined the profound impact that myalgic encephalomyelitis-ME/CFS-has on those living with the condition, but also on their families, friends, carers and communities. Noble Lords have spoken very movingly about the reality, and I am grateful for the welcomes across the House for a number of government actions. I recognise what noble Lords have described, which is-to pick up a few points-a lack of awareness, variability in services, the stigma faced by those with ME/CFS and the need to go further. We recognise all of that. The fact is that the system has not worked as it should for people. But that is why, early on, the Government prioritised publication of our final delivery plan on ME/CFS, which we published in July last year. I assure noble Lords that we work closely with those most impacted by the effects of this debilitating condition, including those with lived experience. I add my thanks to charities and campaigners for their work, because they have given voice to this subject. We want to ensure that patients are truly heard by a system that can respond to those voices, because historically that has not been the case. So the plan sets out a clear direction for...
Before the Minister sits down, I asked what support is being given to those services that are unable to fulfil the NICE guidelines, and about the Government’s attitude to including reasonable adjustments in the information on the single patient record.
I would be pleased to take those two points away and look at them, particularly the second, which is a very practical suggestion. I am grateful to the noble Baroness, as ever, and I will gladly write to her.