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.
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 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.
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 improvement, and it focuses on three key ambitions: boosting research, improving understanding and education, and strengthening the care and support people receive.
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.
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 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?
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.
The noble Baroness, Lady Scott, and the noble Lord, Lord Evans, raised a number of questions about funding timelines and accountability. I confirm that the department has overall responsibility for progress against the final delivery plan, and officials are actively tracking progress. It is very much worth noticing that three-quarters of the plan’s actions have been completed or commenced or are currently ongoing. I say to the noble Lord, Lord Evans, that an update on the delivery of the final delivery plan will be communicated next month.
We know, as has been spoken about, that a lack of research has meant that those with ME/CFS have been left feeling undervalued, frustrated and overlooked. That is why the final delivery plan commits to stimulating research, including through new funding opportunities, better support for researchers and building capacity and research. We have gone beyond the actions in the final delivery plan, as all noble Lords were good enough to reference, by investing £4.75 million in SequenceME, which will create the first high-resolution genetic map for ME/CFS. I believe that this will offer new hope to patients and pave the way for better diagnostics and future treatment, which, after all, is what we need.
All noble Lords asked for further commitments. To the points I have just made, I add that the Government are investing in turbocharging clinical trials research. Key to this is enabling new treatments to get to patients faster; and the NIHR has funded projects to explore the feasibility of a clinical trial for treatments for ME/CFS and other post-acute infection conditions, as noble Lords have asked for. Of course, funding and support is available for researchers, and the Medical Research Council and the NIHR welcome funding applications for research into ME/CFS and other post-acute infection conditions. Addressing gaps in knowledge and awareness around this condition is also crucial, because people who live with ME/CFS have to be seen and feel seen. They need to be reassured, and they need evidence that they are going to be taken seriously. I am therefore glad to say that NHS England has developed an e-learning programme, which consists of four modules and seeks to improve the understanding of healthcare professionals, and to support them to provide the right care at the right time for those who need it, including those with severe ME/CFS.
Experiences of care vary widely—that should not be inevitable, but we recognise that they do—but I believe that those with ME/CFS deserve a high standard of care, no matter who they are or where they are. We will seek to improve that through the development of a new template service specification for mild and moderate ME/CFS, and that will expand to include the severe nature of the condition. The template will focus minds and demonstrate to integrated care boards the ways in which NICE guidelines can be implemented. Key here too is that it will provide good practice examples for ICBs, so they can model their own services on where it is being successful.
There is, as I said at the beginning, much more to be done. We are working at pace to implement this final delivery plan, and we will work continually with stakeholders to make sure that it meets the mark. The noble Baroness, Lady Scott, and the noble Lord, Lord McCrea, asked about interim support. We are not just committed to considering a specialised service for those with a very serious version of the condition; we are also exploring what preparatory work can be taken forward ahead of April next year. We want to progress the work at pace once the transformation in respect of NHS England has been concluded. In the meantime, we are considering a range of potential interim measures to support those with severe ME/CFS, including further promotion of the e-learning modules that I referred to, making sure they span very severe and severe ME/CFS, alongside the recommendations that have been presented to government directly by patient groups.
The noble Baroness, Lady Scott, asked about setting up an expert advisory panel. We do not currently have plans for such a panel for those with severe ME/CFS, but I assure the noble Baroness that we engage very closely with experts from NHS England, clinicians and experts in the charity sector so that we can develop a much broader approach to supporting patients with ME/CFS.
In response to the question about exploring whether a specialised service should be commissioned for very severe ME/CFS, any decision on whether this committee would be convened remains at the discretion of the Secretary of State. I say to the noble Lord, Lord Evans, that we recognise that ME is more likely to affect women and that early results in the DecodeME study have found that women with ME/CFS tend to have more symptoms and co-occurring conditions than men. That will be taken into account. Again, I am most grateful to the noble Baroness, Lady Scott, for her work and advocacy in this area.