I know the Minister will say the delivery plan is a starting point, and I accept that, but sadly it is a plan without funding, timelines or accountability, and it risks becoming just another document that people living with ME are told to welcome while their daily reality remains unchanged.
Baroness Scott of Needham Market
Yesterday’s Question for Short Debate (18th June 2026) instigated by Baroness Scott of Needham Market focussed on a single question “To ask His Majesty’s Government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis.
The discourse painted a stark and deeply human picture of what it means to live with severe ME. Three peers and Baroness Merton (Parliamentary Under-Secretary at the Department of Health and Social Care) described how severe ME transforms active, ambitious people into individuals who are house – or bed-bound, unable to tolerate light, sound, movement or even touch, and often dependent on others for the most basic aspects of daily life. Severe and very severe ME were repeatedly emphasised as conditions of profound disability, with some patients unable to eat normally and reliant on tube feeding or hydration support. They stressed that these patients are largely invisible to the healthcare system because they are too unwell to attend clinics, and that the NHS currently has no effective way of reaching them. This invisibility, combined with widespread misunderstanding of the illness, has led to dangerous gaps in care. Recent prevention of future deaths reports, including those concerning Maeve Boothby O’Neill and Sarah Lewis, were cited as tragic evidence that inadequate clinical understanding and the absence of specialist services can have fatal consequences.
A major theme of the short debate was the crisis in care for people with severe ME. Their Lordships described a system in which patients are passed between services that do not know how to help them, or worse, offer advice that actively harms them. Baroness Walmsley raised one carer’s testimony which illustrated this vividly: after waiting six months for an NHS appointment, their severely ill partner received only a ten‑minute phone call from a consultant whose specialty was diabetes, who simply suggested a multivitamin before the clinic closed the next day with no replacement service. Many GPs, she said, still lack even basic understanding of severe ME, and some continue to recommend inappropriate options such as talking therapy for a patient who could not tolerate sound. It was argued that the government’s ME Delivery Plan, published July 2025, was a welcome recognition of the problem but lacked funding, timelines and accountability. There was expressed particular concern that work to explore a specialist service for severe ME will not begin until April 2027. For people with such fragile health, peers warned, a year’s delay is not a bureaucratic inconvenience but a period in which their condition may deteriorate irreversibly.
Research was the second major focus of the debate, and the participating peers were unanimous in their view that ME is drastically underfunded relative to its prevalence and severity. It was highlighted that the UK spends twenty times less on ME research than on multiple sclerosis, despite ME being twice as prevalent. This chronic underinvestment has left the field without biomarkers, diagnostic tests or approved treatments, and has discouraged private investment because the scientific foundations remain underdeveloped. While the Lords welcomed the government’s recent £4.75 million investment in the SequenceME project, which will sequence the genomes of 6,000 patients, they stressed that this is only a starting point. What is needed, it was stated, is a long‑term, coordinated programme of biomedical research that includes diagnostics, biomarkers, treatment development and clinical trials, with specific attention to severe and very severe ME—groups that are often excluded from research because they are too ill to participate in standard study designs.
Baroness Walmsley noted that ME sits within a broader category of post‑infectious illnesses, including Long Covid “but we must avoid the danger of the two conditions being confused”, and that the UK has an opportunity to become a global leader in this field if it invests now. Without such investment, she warned, the country risks falling behind other nations and missing both scientific and economic opportunities and urged targeted support to translate biomedical science into commercially viable diagnostics and treatments. She pointed to other situations where there have been successful repurposing of pharmaceutical interventions developed for other diseases and informed the chamber of a new funding opportunity for an NIHR award focused on evaluating repurposed pharmaceutical interventions. and wonder whether these grants might be applied to treat post-acute infection syndromes and associated conditions, including ME signposting the House of Lord’s Science and Technology Committee – Bleeding to Death: the Science and Technology Growth Emergency.
Lord Evans of Rainow‘s speech also raised the point that ME disproportionately affects women. and that evidence consistently suggests that women are significantly more likely to be diagnosed with ME than men. His pleas for the Minister to outline what assessment the Government has 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 went unanswered.
On NHS care provision he noted that
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.
Lord Evans continued and informed those present that the Delivery Plan plan contained 44 actions, he stated “… 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.”
Another major concern raised was the lack of reliable NHS data. Poor coding and inconsistent diagnosis mean that the health service does not know how many people have ME, how severe their illness is, or what support they need. This makes proper service planning impossible and allows the most severely affected patients to remain invisible. Speakers argued that this invisibility contributes directly to unsafe care, wasted resources and preventable harm. There was a call for interim measures to support patients before 2027, such as a virtual ME clinic, an expert advisory panel for hospitals, clear nutritional guidance for severe ME, and the inclusion of reasonable adjustments—such as the need for dark, quiet environments—in the NHS single patient record so that patients do not have to repeatedly explain their needs.
In response, the Minister acknowledged that the system has not worked for people with ME and that services are inconsistent and often inadequate. She highlighted the government’s investment in the SequenceME project, the development of NHS e‑learning modules, and ongoing work on a template service specification for ME services. She confirmed that a progress update on the ME Delivery Plan would be published next month but that “It is very much worth noticing that three-quarters of the plan’s actions have been completed or commenced or are currently ongoing.” and said that interim measures for severe ME were being considered. However, she did not commit to new ring‑fenced research funding, an expert advisory panel, or immediate specialist services, and she did not provide clear timelines or accountability structures. Peers expressed concern that without these commitments, the delivery plan risks becoming another document that acknowledges the problem without changing the reality for patients.
Overall, the debate conveyed a powerful message: severe ME is a medical emergency that has been neglected for decades. Research funding remains far below what is needed, and delays to specialist services risk further preventable deaths. The Lords called for urgent biomedical research, immediate interim support, and a system that finally sees, understands and responds to the needs of people with severe ME. They argued that patients have waited far too long—first to be believed, and now for meaningful action.
