[The following was a question for short debate in the House of Lords. I can only put the start here due to the word limits of the forum, but the full debate can be read here:
https://www.theyworkforyou.com/lords/?id=2026-06-18a.376.1]
To ask His Majesty’s Government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis.
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 tolerate food and are dependent on nutritional and hydration support. We need to be clear about the scale and the seriousness of this issue.
There have been some welcome developments recently with regard to ME. The Government’s ME/CFS delivery plan, published in July last year, was an important step. It finally recognises the needs of people with ME and has signalled a greater willingness to address an illness that has been neglected for so long. However, that recognition, welcome though it is, is not delivery. In March this year the Department of Health and Social Care confirmed that work to explore a specialist NHS service for people with severe ME will not begin until at least April 2027. That is not delivery of the service; it is simply the exploration of one.
For many illnesses a delay of a year would be troubling, but for people with severe ME it may be devastating, leading to further deterioration in their health and, crucially, signalling to them that once again their illness is being forgotten. In practice, the delay will mean that patients continue to be passed between services that simply do not know what to do, or, even worse, continue being harmed by care that is totally inappropriate to their needs. Recent prevention of future deaths reports into the deaths of Maeve Boothby O’Neill and Sarah Lewis raise serious concerns about the lack of specialist services, insufficient clinical understanding and failures to meet even the most basic care needs. These reports should weigh heavily on all of us and, I am sure, also weigh heavily on the
Minister.
Those reports make it clear that it is not just a question of future improvement but of patient safety now. More deaths from ME must be prevented. 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.
I would like the Government to set out what interim support will be available for patients with severe ME before exploratory work on a specialised service begins in April next year. We need clear interim measures, dedicated accountability within the department and within the NHS, and proper co-design with people with severe and very severe ME, along with their families, carers and the charities that support them.
There is also the question of research. I welcome the Government’s recent announcement to invest £4.75 million to enable the Sequence ME and Long Covid study to completely sequence the whole genomes of the 6,000 ME patients already collected. However, ME remains significantly underresearched when compared with its prevalence, severity and economic impact. For comparison, the UK spends 20 times less on ME research compared to multiple sclerosis, despite the fact that ME is twice as prevalent. Private investment has historically been limited because of the lack of established biomarkers and an underdeveloped clinical research pipeline, and this is precisely why the Government need to act. There is an opportunity here for the UK to lead in post-infectious disease research, with ME as a central part of that agenda. Along with Action for ME, I call on the Government to commit to accelerating biomedical research into ME through the life sciences sector by 2027, and this should include targeted support for diagnostics, biomarkers, treatment development, clinical trials and research into severe and very severe ME. The proposed innovation and research duty in the NHS modernisation Bill provides a clear opportunity to strengthen that commitment.
There is a very practical problem with data. At present, poor coding and inconsistent diagnosis mean that the NHS does not have a reliable picture of how many people have ME, where they are, how severe their illness is or what support they need. This makes proper service planning almost impossible, and it makes it too easy for people with ME, particularly severe and very severe, to remain invisible to the system, and they are left without adequate and safe care. I am very conscious that there are excellent clinicians, researchers, carers and voluntary organisations doing everything they can to support people with ME. My criticism is not of those individuals but of a system that has not given those with ME, especially severe ME, the services and the care they need.
I want to finish with a number of questions for the Minister. First, can she outline what interim support will be put in place for people with very severe ME before April next year? Will she consider setting up an expert advisory panel on severe ME which can give guidance to hospitals when they admit severe ME patients? Will the department look at providing clear nutritional guidance for patients with severe ME? Perhaps it could think about establishing a remote, virtual ME clinic along the lines of virtual wards. Will the Government commit to accelerating biomedical research into ME, including research into severe and very severe ME? How will the Government ensure that the delivery plan is backed by clear accountability, funding, timelines and local commissioning duties? People with ME have waited far too long, first to be believed and now for research and treatment.
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 the consultant’s retirement, with no handover to an alternative service. Our experience with primary care has been equally concerning. Most GPs we have encountered have little understanding of severe ME, how profoundly disabling it can be or best practice for care. To give one example, a GP recently suggested to me that my partner try ‘talking therapies’ when he was unable to tolerate sound”.
My first question to the
Minister is therefore: do the Government know how many ME services are implementing the NICE guidelines? If not, what is being done to find out? What is being done to support those that are not implementing the NICE guidance to do so? Obviously, we need to take several steps back from the quality of care to find out how this disease develops. Clearly, the Government should commit to accelerating biomedical research into ME, including the severe and very severe conditions. This should include targeted funding for diagnostics, biomarkers, treatment development, clinical trials and other post-infectious disease research, as my noble friend demanded. But there are also off-label, low-risk interventions, including cannabis-based medicines, which patients may be willing to try but cannot access on the NHS.
As we have just heard, ME remains significantly underresearched relative to its prevalence. Severe sufferers often cannot work from an early age. Those who are bed-bound require constant care at home, which also limits the economic activity of their carers. Improving economic evidence is important as it encourages grant-making decisions. Better cost of illness data would help demonstrate the wider social and economic impact of ME, including costs to the NHS, social care, the welfare system, families and carers, and the wider economy. State-funded research into this would pump-prime investment by charities, academics and pharmaceutical companies. It sends a message that ME matters.
The condition is increasingly being understood within the broader field of post-infectious conditions such as long Covid, but we must avoid the danger of the two conditions being confused. However, I welcome the announcement of a £1.4 million NICE research programme to explore the cost effectiveness of existing healthcare for ME and long Covid to improve the quality of care. Major UK research studies, including DecodeME, LOCOME and Sequence ME & Long Covid, are helping to build momentum. As my noble friend said, there is now an opportunity for the Government to position the UK as a leader in post-infectious disease research, with ME right at the heart of it. Is there a coherent plan for a broad range of research to cover all aspects of ME, or is it a bit here and a bit there? Are we lagging behind other countries and losing an important economic opportunity?
We will also need targeted support to translate biomedical science into commercially viable diagnostics and treatments. In this context, a recent report from your Lordships’ Science and Technology Committee into the need for more support for science-based companies trying to scale up is certainly worth a read. It is called Bleeding to Death: the Science and Technology Growth Emergency. In other situations, there has been successful repurposing of pharmaceutical interventions developed for other diseases. Dexamethasone was an example during the Covid pandemic, and it certainly saved lives. There is a new funding opportunity for an NIHR award focused on evaluating repurposed pharmaceutical interventions. I wonder whether these grants might be applied to treat post-acute infection syndromes and associated conditions, including ME. Can the Minister say whether there has been any progress on this?
We have a once-in-a-lifetime opportunity to do something for ME patients now. The sensory overload suffered by some sufferers means that they must restrict their stimulus by lying in a quiet, dark room, and their care needs to be physically gentle. This means that the environment in which care is delivered is as critical to their health outcomes as the treatment itself. The current definition of patient information in the NHS modernisation Bill risks creating a significant safety blind spot. While the single patient record is welcome and designed to consolidate a patient’s medical history, current guidance omits the contextual clinical data providing accommodations to make services accessible to all patients. Without formal, recorded and transferable data on reasonable accommodations, these patients face preventable harm, wasted clinical resources—when no sensory adjustments mean that appointments fail—and having to re-advocate for their safety needs at every new touchpoint.
By amending the definition of patient information to include reasonable accommodations, we could ensure that the SPR acts as a true safety net, not just for ME patients but for those with learning or communication difficulties. Including this provision does not merely add data; it formalises the duty of care, ensures clinical safety and embeds equity into the very architecture of the future NHS digital infrastructure. Will the Government accept an
Amendment to correct this omission?
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Baroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords)
Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
Shockat Adam Independent, Leicester South
Sharon Hodgson The Parliamentary Under-Secretary for Health and Social Care
Lee Dillon Liberal Democrat, Newbury
Helen McDade Reform UK
Angela Constance Scottish National Party
Lord McCrea of Magherafelt and Cookstown DUP 
Baroness Walmsley Chair, Childhood Vaccinations Committee, Chair, Childhood Vaccinations Committee 
James Naish Labour, Rushcliffe
Preet Kaur Gill The Parliamentary Under-Secretary for Health and Social Care
Tom Morrison Liberal Democrat Deputy Chief Whip
Zarah Sultana Your Party, Coventry South
Jo Platt Labour/Co-operative, Leigh and Atherton