Severe Myalgic Encephalomyelitis

Baroness Walmsley Excerpts

Thursday 18th June 2026 Lords Chamber

[Baroness Walmsley (LD)]

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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[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

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.

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.

[Baroness Walmsley (LD)]

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.

[Baroness Merron (Lab)]

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.