Severe Myalgic Encephalomyelitis

Lord Evans of Rainow Excerpts

Thursday 18th June 2026 Lords Chamber

[Lord Evans of Rainow (Con)]

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 Health and Social Care. I therefore hope the Minister can tell the House today when the promised progress report will be published and who will be responsible for ensuring delivery across government and the NHS.

Nowhere are these questions more urgent than for those living with severe and very severe ME. These are often the patients with the greatest needs and the least ability to advocate for themselves. It is therefore concerning that the only delayed action within the delivery plan relates to consideration of specialised services for this group, with the decision now not expected until April 2027. The evidence presented by charities and campaigners illustrates why this matters. Preliminary findings from Action for ME’s recent survey suggest that many people with severe and very severe ME are unable to access existing specialist services because they are simply too unwell to attend them. Large numbers report receiving little or no ongoing support from either specialist services or primary care, while many face serious challenges in meeting basic needs, including nutrition. This matters not only because of the immediate impact on the patient’s quality of life but because early intervention and appropriate support can prevent longer-term deterioration.

If people have access to advice, treatment, system management and practical support at an earlier stage, there is a greater chance of helping them maintain their independence and remain connected to education or employment where appropriate. Delays in accessing support can leave people becoming progressively more unwell, making recovery and participation in everyday life considerably harder. That is why timely and effective services are so important, not only for those who are already severely affected but for those at risk of reaching that point.

It is also important to recognise that ME disproportionately affects women. Evidence consistently suggests that women are significantly more likely to be diagnosed with ME than men. Can the Minister therefore say what assessment the Government have made of the reasons behind this disparity and whether the needs of women living with ME are being specifically considered as the delivery plan is implemented?

Recent prevention of future deaths reports have also highlighted serious concerns regarding the care available to some of the most severely affected patients. The Government have stated that integrated care boards remain responsible for commissioning appropriate services in the meantime. Can the Minister therefore explain what assessment has been made of the current provision for severe and very severe ME, whether significant variation exists across the country, and what interim support will be available before any decision on a nationally commissioned service is reached in 2027?

We must also not lose sight of the critical importance of research. We welcome the support provided for the DecodeME survey. Its early findings identify potential genetic links involving the immune and nervous systems, representing an encouraging step forward in understanding the biological mechanisms underlying this condition. Yet ME remains significantly under-researched relative to its prevalence and impact. The Government have rightly spoken about the UK’s ambition to lead in life sciences and post-infectious disease research. There is a strong case for ensuring that ME forms part of that agenda, including through support for research into diagnostics, biomarkers, treatments and clinical trials.

In closing, I ask the Minister three questions. When will the Government publish their next formal update on the delivery of the ME plan? What interim support will be provided for people with severe and very severe ME before April 2027? Can she assure the House that the decision on specialised services will not be subject to further delay? Those living with ME have waited a long time to be heard. They deserve not only recognition and promises, but delivery.