Severe Myalgic Encephalomyelitis

Baroness Scott of Needham Market Excerpts

Thursday 18th June 2026 Lords Chamber

Asked by

[Baroness Scott of Needham Market]

To ask His Majesty’s Government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis.

[Baroness Scott of Needham Market (LD)]

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.

Terminally Ill Adults (End of Life) Bill

Baroness Scott of Needham Market Excerpts

Committee stage
Friday 5th December 2025 Lords Chamber

[Lord Falconer of Thoroton (Lab)]

In this group, which is group 3, there are a number of amendments put forward by me but also two amendments put forward by Back-Bench Peers that are in the same sort of area. These are drafting changes. If anybody objects to any of the drafting changes, I will not move them when the time comes. If there is no objection, I will move them as long as there is going to be no vote at this stage.

Can I just go through them very quickly? Amendment 6 makes it clear that the person, who has to be over 18, has to have the preliminary discussion referred to in Clause 5, and it is making clear something that I say is already explicit in the Bill. Amendments 8 and 9 in the names, respectively, of the noble Lord, Lord Moylan, and the noble Baroness, Lady Goudie, seek to make explicit the same thing, and I hope they will accept that I am giving effect to what they are saying in relation to that.

Going on to another topic of drafting changes, Amendments 290, 366 and 931 in this group get rid of a duplication issue. Everybody wants domestic abuse to refer to coercion and control, and financial abuse. That has been achieved by incorporating the definition of domestic abuse in the Domestic Abuse Act 2021. In some parts of the Bill, as it is currently drafted, we have left in the wider definition of domestic abuse, which is now duplicative because of bringing in the definition of domestic abuse that is at the top of page 1 of the Bill; so Amendments 290, 366 and 931 remove the duplicative effect.

Amendments 332, 417, 418, 419 and 425 deal with the situation where the doctor—one of the two doctors who has got to give the assessment—cannot or will not continue to act. As currently drafted, you can get a replacement doctor only if the doctor who will no longer agree to act or cannot act has either died or suffered illness. These amendments delete the word “illness” and simply provide for a mechanism where, if the doctor cannot or will not continue to act, you can get a new doctor.

On Amendment 405, Clause 12(5) requires that the doctors who are doing the assessment make sure that there is appropriate adjustment for language and literary barriers. I am putting forward a new draft that is clearer but does not in any way change the sense.

Under Amendment 413, where a doctor has a doubt about something and is one of the two assessing doctors, he has to get a second opinion on the clinical diagnosis for the person. In relation to the second doctor, the Bill said that, if he had a doubt, he could rely on the opinion obtained by the first doctor, but that seems to us to be illogical. If the second doctor has a doubt, even after reading that opinion, he should get an opinion of his own, and that is the effect of Amendment 413.

Amendment 416 is the final drafting amendment. It redrafts Clause 13(3), which deals with the situation where the second doctor has said no, he does not think the conditions are satisfied. In those circumstances, you can get another doctor to come in. We have redrafted Clause 13(3) to make it clear that, if the second doctor says yes, he has to give explicit reasons why he is disagreeing with the first second doctor. I commend these drafting changes and beg to move Amendment 6.

[The Deputy Chairman of Committees (Baroness Scott of Needham Market) (LD)]

My Lords, I must inform the Committee that, if Amendment 6 is agreed to, I will not be able to call Amendment 9 by reason of pre-emption. We now come to Amendment 7, which is an amendment to Amendment 6.

Amendment 7 (to Amendment 6)

Moved by