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

Long Covid

Baroness Scott of Needham Market Excerpts

Thursday 17th November 2022 Lords Chamber

[Baroness Scott of Needham Market (LD)]

My Lords, I thank the noble Baroness, Lady Thornton, for bringing this important subject to the House. I have a very close relative who has had ME for a number of years, and I have seen at first hand how debilitating and life changing it can be. I have become the vice-chair of the APPG for ME and I have talked to hundreds of ME patients who have had their condition ignored or ridiculed. They have been subject to inappropriate and sometimes dangerous medical intervention, and they are struggling with an employment and benefits system that simply does not acknowledge the realities of their condition. Those 250,000 ME patients are now, in effect, being joined by over 2 million long Covid sufferers.

It is worth starting by pointing out that debilitating post-infection syndromes such as long Covid are not new clinical entities. In American medical literature, ME-like symptoms are described as far back as 1934. When ME was first noticed in this country it was described as “yuppie flu”, but in fact these syndromes affect millions of people suffering from a range of viruses, including those living in poor, third-world countries.

The Institute for Fiscal Studies estimates that one in 10 people with long Covid have given up work, with “persistent labour market effects”. This month’s Lancet said that

“post-acute infection syndromes could pose a substantial public health burden in the near future if appropriate measures are not … taken”.

Despite the huge economic cost they inflict, as the noble Lord, Lord Bethell, said, post-viral illnesses have been neglected, dismissed and under-researched for far too long. We still have no diagnostic blood tests for either long Covid or ME.

As well as the breathlessness, chest pains and loss of taste or smell which characterise long Covid, patients exhibit a cluster of symptoms such as the debilitating fatigue, post-exertional malaise, cognitive dysfunction, PoTS and sleep disturbances that are also diagnostic of ME and other post-infection syndromes. While all the funding for research into long Covid must be welcomed, it is disappointing that some researchers are still ignoring or are not aware of what has already been learned about what may be causing ME and how this could help us to understand the causes of long Covid.

Almost 40 clinical trials into possible treatments for long Covid have been registered, some involving interventions that have already been assessed in ME. Some of these treatment trials have small sample sizes or no control groups. The lessons do not appear to have been learned from the use of poor-quality methodology in many clinical trials involving ME. Some health professionals who are managing people with long Covid are unaware of or ignoring what we have learned about the management of ME and other post-infection syndromes, on activity and energy management particularly. The ME charity sector produces excellent information on symptom and energy management, as does the new NICE guideline, but people with long Covid are often simply unaware of this information, as are many health workers.

Another important lesson that needs to be learned from ME is that misdiagnosis can occur when people with chronic fatigue are not properly assessed and are labelled as having a post-viral syndrome. There are some very disturbing cases being reported of people having long Covid when, in fact, they have another medical condition. A Suffolk councillor recently featured in the news when, it turned out, her long-standing diagnosis of long Covid actually proved to be lung cancer.

Research into the cause and diagnosis of, and effective treatments for, long Covid could help those with ME. The ME Association has requested that clinical trials for long Covid treatments include a group with ME. What has been learned about the management of ME can help many people with long Covid.

Harlan Krumholz, a cardiologist at Yale, said:

“No one wanted the pandemic, but sometimes a jolt to the system can create innovation in ways that wouldn’t have occurred otherwise”.


That should be our guiding principle.

Health: Chronic Fatigue Syndrome

Baroness Scott of Needham Market Excerpts

Tuesday 12th October 2021 Lords Chamber

[Lord Kamall (Con)]

I understand that NICE wants to publish these guidelines as quickly as possible. It is very aware that there have been two delays: first, to make sure that it took on board the various comments; and secondly, the current delay because of issues raised by some clinician groups. As noble Lords will understand, NICE is independent from the Government. It hopes to progress this issue by having the roundtable, hearing all the different views and seeing if some consensus can be reached before the guidelines are published.

[Baroness Scott of Needham Market (LD)]

Does the Minister accept that the prevailing view in some quarters that ME is a psychological disease is causing untold harm, including to children and young people, who are being forced to accept treatments which are damaging to them, and to their parents, who are sometimes accused of abuse? Taking time to achieve consensus is one thing, but the Minister should be aware that there is a huge cost to this.

[Lord Kamall (Con)]

It is always important to recognise the unintended consequences and the costs of any delay. I can understand the frustration of many who have ME/CFS at the delay to the publication of the guidelines. It is important that we try to get as much consensus as possible. If noble Lords feel that there are further delays, I hope they will write to and put pressure on me and wider stakeholders, so that we can put pressure on NICE, but it is important that we try to achieve as much consensus as possible.

Social Care and the Role of Carers

Baroness Scott of Needham Market Excerpts

Thursday 24th June 2021 Lords Chamber

[Baroness Scott of Needham Market (LD) [V}]

My Lords, I will focus my remarks on the wonderful work done by voluntary and community groups during the pandemic—as well as the rest of the time—particularly in the area of social care. We owe them an enormous debt of gratitude.

I declare an interest as a trustee of Community Action Suffolk, the infrastructure body for the county. I am also a member of the advisory body of the Institute for Volunteering Research in Norwich. I can recommend that all Peers with an interest in these matters take a look at the research being done there.

Volunteers bring a user-based focus and use their personal commitment, time and skills to make the social care system more resilient. In this way, society becomes more resilient. However, they are complementary to—and not a substitute for—properly resourced public services and professional staff. Volunteers can play a significant role, but government needs to use the existing knowledge and evidence as the basis on which to build effective and sustainable volunteering efforts.

Covid-19 has highlighted much of what we already knew from this evidence. The voluntary sector best supports individuals when it is linked with statutory services and not kept disconnected from them. A key achievement of Community Action Suffolk throughout the pandemic has been to have a seat at the table to ensure that the response of all the voluntary organisations in the county is dovetailed with statutory services. That way, we have been able to link volunteers with shielded individuals, support food banks, assist school testing programmes, and much more.

The Institute for Volunteering Research has shown just how important these infrastructure bodies are. As the demand for their services and the volunteer base grew, their role became more important. But not all areas have these. They are underfunded and not universal.

As people return to work, the sustainability of the volunteer base is in question. Older people are re-evaluating their lives in the same way as are so many of us. Further research by the IVR has shown that attempts by national government since 1948 to direct volunteer efforts centrally have been largely ineffective. Further research by the ESRC has shown how the devolved Administrations have taken a significantly different approach during the pandemic.

Levelling up should not just be about infrastructure in certain geographic areas. There are huge variations in social capital, access to community assets and people’s capacity to help one another. Government departments need to use the available evidence and consider working with funders to create an observation study to find a clearer picture of the disparities which exist and to build a response to them.

Health Protection (Coronavirus, International Travel) (England) (Amendment) (No. 7) Regulations 2021

Baroness Scott of Needham Market Excerpts

Monday 22nd March 2021 Lords Chamber

[Baroness Scott of Needham Market (LD) [V]]

My Lords, the noble Baroness, Lady Thornton, has already mentioned the Joint Committee on Statutory Instruments. I have served on that committee for about two years now. It is one of the less well-known workhorses of the parliamentary scrutiny system. It is very technical in nature and staffed by a very effective and thorough legal team. It is always a busy committee but recent years have been particularly active, with the continued volume of EU exit SIs and those, such as the measure today, relating to the pandemic. When you strip away all the legal technicalities, at root the committee is concerned to see that the law is correctly applied and that agreed parliamentary procedure is adhered to.

This SI and others like it are a very good example of the kind of issues that the committee highlights because it is rather exercised by them. In this case, “variant of concern” and “variant under investigation” are used but with no definition or meaning. The department has said that they do not need to be defined here because they have a commonly understood meaning in the scientific and health community. In practice, that may be true but there is an important point here: the law should be unambiguous and understandable to everyone. There are other examples where the department has included a definition, so it is not even being consistent.

Secondly, without going into the detail of our report there are drafting errors, which the department acknowledges. Three of them have had to be corrected by a subsequent instrument and the fourth, it says, will be. This is not a criticism of the department—drafting at pace is challenging—but it highlights how hard it is to keep track of exactly what Parliament is passing.

The committee has concerns about many trends and will shortly produce a special report which highlights them. The conflation of statute and guidance has exercised the committee and other noble Lords. This, compounded with the practice of government announcements and their attendant publicity, followed by regulation that does not match, is a major concern.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

The noble Lord, Lord Desai, has withdrawn so I call the next speaker: the noble Lord, Lord Naseby.

Covid-19 Vaccines Deployment

Baroness Scott of Needham Market Excerpts

Thursday 11th February 2021 Lords Chamber

[Lord Bethell (Con)]

As ever, my noble friend is extremely perceptive in his insight. The Moderna vaccine is indeed an interesting one that may well prove to be a useful complement to the Pfizer and AstraZeneca vaccines, which are the bulwarks of our vaccination deployment at the moment. As he probably knows, the MHRA has already sanctioned the use of existing vaccines in some children where there may be a strong clinical need, and under the advice of their clinicians. However, it is our aspiration to spread the vaccines as widely as possible. Unfortunately, children are a vector of infection and it may be that there are strong arguments for vaccinating not just vulnerable children, but perhaps a large number of children. We will look at various different vaccines for that, and Moderna may possibly be a candidate for the kind of A-B double-dose vaccine that I alluded to earlier.

[Baroness Scott of Needham Market (LD) [V]]

My Lords, as we move towards group six, we are getting into a rather complex situation where vaccination is not determined only by age but by health conditions and their severity. Can the Minister say something about how we will communicate to the public the kind of conditions and the level at which they have them that will lead them to be vaccinated so that people have a clear understanding and GP practices are not inundated by the task of having to give that information out?

[Lord Bethell (Con)]

The noble Baroness is entirely right. We are entering a different phase of the rollout where definitions are not based so clearly on age and where more choices have to be made. Noble Lords have raised special groups and interests for which they have made a good case for them to be prioritised. We are reaching the moment when that communication will be made more clearly. I cannot say for certain what it will be because I do not yet have the information in my gift. However, I reassure the noble Baroness that, when that moment comes, the communication will be done very clearly and all the arguments that have been made in this Chamber will be listened to.

Health Protection (Coronavirus, Restrictions) (Self-Isolation and Linked Households) (England) Regulations 2020

Baroness Scott of Needham Market Excerpts

Thursday 7th January 2021 Lords Chamber

[Baroness Scott of Needham Market (LD) [V]]

My Lords, there is no doubt that the appearance of this new variant has taken us into a very difficult situation. As welcome as the vaccine is, we have to acknowledge that getting the whole country protected will not be a very quick process. Therefore, the measures that we take, individually and collectively, while we wait to be vaccinated are absolutely key.

I want to ask the Minister two questions. First, what work is going on to reassess the protocols and procedures that have been developed for workplaces, schools, places of worship and so on to ensure that systems which were fit for purpose with the original virus continue to be so with one that is more transmissible?

Secondly, on an individual basis, I acknowledge that this is anecdotal but I am hearing a lot of stories about people who contract Covid and say that they have no idea how they caught it because they have been really careful and have followed all the guidance and procedures. Is any reassessment going on of the sorts of behaviours that many of us have fallen into the habit of adopting? Are those preventive measures still fit for purpose or should we be protecting ourselves and others differently?

Finally, on a different matter, there is a huge role to be played in a vaccine rollout by volunteers, not just as injectors but in a whole range of ways. My plea to the Government is not to rely on a centralised system of the kind we saw last year, as that just does not work. There is a lot of good will but it needs to be harnessed and used locally, because that is where it can be used to best effect.

Covid-19

Baroness Scott of Needham Market Excerpts

Thursday 3rd September 2020 Lords Chamber

[Baroness Scott of Needham Market (LD) [V]]

Is the noble Lord aware of the situation at Banham Poultry in Norfolk where, as of this morning, 104 people at the factory have tested positive and the public health director has reported that only 52% of contacts have been traced? This has led to the local authority bringing in a company to see if it can improve that figure. What conclusions are being reached as to why, in this instance, there is such a low rate of positive contact with people who may be affected?

[Lord Bethell (Con)]

The truthful answer to the noble Baroness is that I know that there is an outbreak at Banham but I do not know the operational details of the kind she describes. What I can say is that the system is deliberately constructed so that a local director of public health, or the local authority, has the option, if they think it has local relevance, to bring in the resources that are needed for any particular arrangement. If, for some reason, a local director of public health, or the local infection control team, sees an opportunity for bringing in outside resources—a charity, a company, a technology—that is entirely appropriate and welcome. That is exactly the kind of local intelligence and expertise that we depend on to be effective. A central track and trace operation cannot do everything; that point that has been made in this Chamber hundreds of times and is a point that we entirely embrace. I am, in fact, hugely encouraged by the anecdote the noble Baroness tells.

Health Inequality: Autism and Learning Disabilities

Baroness Scott of Needham Market Excerpts

Thursday 10th May 2018 Grand Committee

[Baroness Scott of Needham Market (LD)]

I too thank the noble Lord, Lord Touhig, for tabling today’s debate and pay tribute to him and other noble Lords around this House who champion the cause of people with learning disabilities and learning difficulties and those on the autistic spectrum. As we have heard, that group includes some of the most vulnerable people in our society, for whom our advocacy and that of others is essential in ensuring their basic safety, that their needs are met and that their quality of life is the very best it can be.

I wish to focus my brief remarks on this question of advocacy, and to do so from the perspective not of someone with clinical or personal experience, but as the patron of a Suffolk charity, Ace Anglia, which does wonderful work in this field. In this world of care pathways, detailed measurements and performance indicators, there is a danger of creating care by algorithm, which loses sight of the individual. I heard from a specialist nurse about the difficulties of defining learning difficulty and learning disability. The result of that nuance is that you can end up with your name not on the learning disability register, so you do not get called for a health check, and then the danger of undiagnosed health conditions can increase.

A learning disability adviser to the NHS told me that, as someone with a mild learning disability himself, he was convinced of the need for more people like him in paid NHS roles because, “They know how things should be like”. That is why it is crucial to have high-quality local advocates, such as Ace Anglia, which work with individuals on a one-to-one basis to improve their lives then, crucially, turn that experience into valuable learning, which can then be used to help others. I have been told by a number of people in health and social care in Suffolk that the work of Ace has been a real catalyst for cultural change and has created what they have described as “real-world understanding”.

Ace holds regular get-togethers around the county for its users, which are used to share experiences of services such as the NHS or public transport. It provides good qualitative evidence to local service providers. The organisation has become expert in facilitating that sort of event so that users can feel genuinely empowered in what can be a hostile system. Ace has been commissioned by its local clinical commissioning group to produce 20 easy-read resources to support people with learning disabilities in navigating their way through primary care services. These will give people more knowledge and control over their health and allow for better communications. So much depends on having a local group as effective as Ace and on the personal relationships that they can build with the key people locally in the NHS, or social services. Could the Minister reflect on how these local support networks can be helped to thrive right around the country?