Myalgic Encephalomyelitis

Helen Maguire Excerpts

Wednesday 19th November 2025 Westminster Hall

[Helen Maguire (Epsom and Ewell) (LD)]

It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Wells and Mendip Hills (Tessa Munt) for securing this vital debate on such an important issue as myalgic encephalomyelitis. This chronic condition completely changes people’s lives, as we have heard today.

My constituent, who loved her job as a nurse, was diagnosed with ME in 2019. She has been left unable to work, relies on a mobility scooter to get around and is often confined to her bed for days on end. Since her official diagnosis, she has experienced constant muscle pain all over and severe headaches that frequently prevent her from sleeping. Despite her battle with myriad health challenges, one GP asked her, “What do you expect me to do about it?” Reading that stopped me in my tracks but—even worse—that reaction is not isolated. I contacted the local NHS trust on behalf of my constituent, and its locally commissioned NHS chronic fatigue services, which include ME, have been suspended as they cannot cope with the number of referrals.

[Chris Murray (Edinburgh East and Musselburgh) (Lab)]

The experience of the hon. Lady’s constituent mirrors that of my constituent Emily in Edinburgh. Even though health is devolved, we face the same situation. Does the hon. Lady agree that even though Edinburgh is leading the way in research—as the right hon. Member for Godalming and Ash (Sir Jeremy Hunt) said—we need to look into people’s experience of dealing with health services?

[Helen Maguire]

I absolutely agree.

[David Mundell (in the Chair)]

Order. I should say that interventions on the spokespeople will not lead to them having any additional time.

[Helen Maguire]

My constituent’s experience builds into the bigger picture of a healthcare system that is simply not set up to support those with the most complex and devastating conditions. People with ME who rightly rely on health professionals for advice, support and solutions cannot be abandoned just because their diagnosis does not fit into a one-size-fits-all treatment plan.

[David Chadwick (Brecon, Radnor and Cwm Tawe) (LD)]

We have heard just how little money is being spent on research, comparatively speaking. As has already been mentioned, the DecodeME study is identifying genetic signals linked to immune and neurological pathways, offering real clues to the biological mechanisms of this disease. Does my hon. Friend agree that the Government must finally adopt a strategic and properly funded research programme?

[Helen Maguire]

I absolutely agree with my hon. Friend.

Although I welcome the Government’s final delivery plan for ME and chronic fatigue syndrome, and I recognise the contribution of the ME community in shaping it, I remain deeply concerned that the plan falls short of delivering the meaningful change that is urgently needed by people living with those conditions. I therefore reaffirm the calls rightly made by my hon. Friend the Member for Wells and Mendip Hills. In particular, the plan fails to set out dedicated funding to encourage early career researchers to specialise in ME research, or strategies to keep established researchers in the field. Those things are vital to develop new pathways that enable people to better cope with their diagnosis and, most importantly, improve their quality of life.

Funding is also needed to step up education and training to improve understanding of the condition across the public sector and to pilot new approaches that strengthen the quality of care. Recent figures estimate that over 400,000 people in the UK have ME, and around 50% of the 1.9 million people in the UK with long covid are thought to have symptoms that are similar to ME. Those figures make it clear that there is a desperate need for research to develop better treatment options and training for doctors, carers and wider healthcare workers.

We cannot ignore the fact that making those changes is a big task. Under the previous Conservative Government, cuts only made supporting people harder—from slashing health services to letting wait times pile up and overseeing a horrifying breakdown of community services—so it is no wonder that more people are suffering without support. That is why I urge this Government to make sure that the final delivery plan delivers real change for people living with ME and invests properly in research to change the course of diagnosis and treatment for good. For my constituent and for people living with ME across the country, we must take serious action to ensure that their experience with the healthcare system is rooted in dignity and care.