Myalgic Encephalomyelitis

Kerry McCarthy Excerpts

Wednesday 19th November 2025 Westminster Hall

[Sir Jeremy Hunt (Godalming and Ash) (Con)]

It is a privilege to speak under your chairship, Mr Mundell. I thank the hon. Member for Wells and Mendip Hills (Tessa Munt) for calling this debate.

I would like to use my short time to tell the story of a young man who made me understand the tragedy of ME six years ago. He was a very promising first-year student at Durham University called Tom. He was on track to get a first in maths. He was a big hockey player, but in his second year, he started struggling, first to walk upstairs and to climb hills, and eventually he found that he could not wash himself, eat by himself or even read. Then, to his enormous frustration, he dropped out in his third year. When all his friends were starting a new life with their first job, he had to stay at home and go through the nightmare of first trying to get a diagnosis and get someone to agree that he had a problem, and then trying to get treatment for it.

Tom felt that he was going in circles: doctors were not really persuaded and he was not getting any answers. He was very lucky because he had two remarkable parents, Alex and Denise, who could afford to go to America. In fact, they moved to America and they got him enrolled on clinical trials. This story has a positive ending, because six years on, he is doing incredibly well. He is actually thriving; he has a job and a partner, and his life is back on track—except, sadly, in America rather than here.

As the hon. Member for Wells and Mendip Hills said, there are 400,000 people with ME or with long covid symptoms that are like severe ME. For some of them, it is already too late. Maeve Boothby O’Neill and Sarah Lewis tragically lost their lives, and coroners issued prevention of future deaths notices.

[Kerry McCarthy (Bristol East) (Lab)]

Sarah Lewis was my constituent. I have here the prevention of future deaths report that was issued after the inquest. She took her own life, but was severely ill with ME. One thing that comes through very strongly is that she did not feel she was believed or taken seriously, or that her symptoms were recognised by the medical profession. It is so important that we challenge the medical profession to take this more seriously.

[Sir Jeremy Hunt]

I thank the hon. Lady for talking about that very sad case. I actually think that the NHS is better than it was because of long covid.

The real cause for hope is Edinburgh University’s DecodeME study, which the chief executive of Action for ME, Sonya Chowdhury, described to me as being like a treasure hunt map with eight crosses where there is a genetic code that matches ME, but where we then have to go and dig up that treasure. That is what is now waiting to happen, and why funding is so important.

Ultimately, with the quality of research in this country, there should be no need for anyone to have to go to the United States or Germany for their treatment. During the pandemic, more lives were saved through treatments and vaccines discovered in this country than any other country in the world. We have amazing research happening here.

My plea to the Government is this: the last Government started the process by ignoring some of the scepticism in the medical community about whether ME was really a serious condition. It would be fantastic, and it would give so much hope, if this Government could now finish the job and invest in research that will transform the lives of so many people like Tom.