Myalgic Encephalomyelitis

Jim Shannon Excerpts

Wednesday 19th November 2025 Westminster Hall

[Tessa Munt]

I accept my hon. Friend’s point. Most people I speak to say that ME has nothing to do with psychiatry. We now have evidence from Edinburgh, which I will go on to in a moment, to explain exactly why that is the case.

Our counterparts in Germany have grasped the importance and scale of the challenge. Just last week, the German Government announced a national decade against post-infectious diseases, with a particular focus on ME and long covid. In Germany, an estimated 1.5 million people are living with ME or long covid. The German Government have rightly recognised post-infectious diseases such as ME as one of the greatest public health challenges of the 21st century. Last week, they committed €500 million—around £440 million—over the next decade into research to understand the causes of post-infectious diseases and to develop treatments.

Will the Minister confirm whether Ministers in the Department of Health and Social Care have discussed that recent funding announcement and the logic behind it? I would love nothing more than to see the UK Government come up with a comparable level of commitment—or will the Government wait a decade for the German Government’s conclusions before taking action?

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady on bringing this debate forward. In Northern Ireland, the figures for ME have unfortunately risen from 7,500 to 12,500 in the past few years. We have no clinical lead, no specialist services and no commission care pathways. We need research. Queen’s University Belfast is really good with research partnerships. Does the hon. Lady agree we should spend the money on research and find the cure? It has been said that the cure for cancer will come in 10 years’ time. The cure for ME could come too if research money were put into it.

[Tessa Munt]

I absolutely agree, and I thank the hon. Gentleman. The second area where I would urge the Government to go further is support for people with severe and very severe ME. It is estimated that around one in four people with ME are severely affected. ME is perhaps the only condition where the sicker someone becomes, the less care they receive from the NHS. The recent prevention of future deaths report focused on the tragic case of Maeve Boothby O’Neill, describing NHS care for severe ME as “non-existent”.

In my work on this issue, I have collaborated closely with #ThereForME, a campaign founded by two women, Karen and Emma, who are carers to partners with very severe ME. It can be difficult to comprehend the depth of suffering that ME can bring in its most extreme forms. With his permission, Karen has shared details with me about of her husband James’s day-to-day life.

Before developing ME, James, in his 30s, lived a full life and was a civil servant. Today he is completely bed-bound and spends 99% of his day alone in a dark room, unable to tolerate any noise, light or stimulation. He is hardly able to communicate and is so sensitive to touch that, despite his suffering, his wife Karen is unable to give him a hug or hold his hand. Despite an acute level of need, James is receiving next to no care from the NHS. Karen tells me that her biggest fear is that he deteriorates to the point of needing lifesaving care. She cannot feel confident that the NHS will provide it.