Myalgic Encephalomyelitis

Wendy Chamberlain Excerpts

Wednesday 19th November 2025 Westminster Hall

[Tessa Munt]

I could not agree more. For far too long, patients have been dismissed, and that care element is incredibly important, because it affects so many people.

In July, the Department of Health and Social Care published the final delivery plan for ME, a cross-Government strategy aiming to improve attitudes, bolster research and better lives. It included some positive steps: new small grants for research into repurposed medications, and the development of a new service specification for mild and moderate ME. However, overall, the consensus of the charities and patient advocates I have spoken to is clear: the delivery plan falls far short of what was needed.

[Wendy Chamberlain (North East Fife) (LD)]

I am interested in what my hon. Friend says about plans in England, because in my constituency we were privileged to have an incredible ME specialist nurse, Keith Anderson, who helped countless people. Sadly, he passed away two years ago, and since then there has been no specialist support in Fife—indeed, there is no specialist ME doctor or nurse in the whole of Scotland. Does my hon. Friend agree that one of the things any plan needs to consider is training, so that, no matter where someone is in the country, they can get access to a specialist?

[Tessa Munt]

I agree. In fact, we do not just need specialists; we also need training for GPs and other healthcare workers.

I will highlight four areas in which we need to see much more from the Government going forward. Given the gravity of the situation, I would appreciate it if the Minister could arrange for written responses to a number of my points.

The first area is funding. If the delivery plan felt threadbare, that is because no substantive new funding was attached to it. Before the plan was published, all 72 Lib Dem MPs signed a letter expressing our concerns about the anticipated lack of funding, which of course came to pass. To put it bluntly, what patients need is transformed NHS care and a step change in research. Neither is likely to happen without investing some money.

The case for investment is clear. I urge the Minister to see this not as a sunk cost, but as an investment in a group of people who are desperate to contribute to society. We know that one in five working-age adults are out of the workforce, many because of health problems, yet remarkably there was no modelling of the demography of those living with ME for the delivery plan exercise, and neither the Department of Health and Social Care nor the Department for Work and Pensions has an estimate of what the neglect of people with ME is costing our economy.

I would like to look at some of the figures. The most recent estimate of the economic impact of ME was for 2014-15—10 years ago—and was carried out by 20/20health. The cost was then calculated at £3.3 billion annually, based on only 260,000 people living with ME. With many more affected following the pandemic and a decade of inflation, that cost will now be much higher. Even the most conservative estimate of current numbers living with ME, excluding cases linked to long covid, puts them at 404,000 patients. Does the Minister accept, using that conservative estimate and adjusting for inflation, the annual economic impact of ME today is likely to be at least £7 billion? If those living with ME-like symptoms following covid are included, we could be approaching an annual cost of £20 billion. Surely it is time for the Government properly to cost the impact of a condition that affects so many, rather than brush it under the carpet, and to invest accordingly.