Why has ME/CFS research been underfunded, and what does the illness cost?

Why has ME/CFS research been underfunded? Historically, research funding for ME/CFS has been far below that of diseases with comparable impact. A study using rough estimates of disease burden found that US National Institutes of Health funding for ME/CFS was only 3% to 7% of the average disease per healthy life year lost between 2015 and 2019. Worldwide, multiple sclerosis, which affects fewer people and results in disability no worse than ME/CFS, received 20 times as much funding between 2007 and 2015.

Why the gap? Analysts have proposed several reasons, none proven. It has been proposed that the historical belief that ME/CFS is caused by psychological factors may have contributed to its low funding. It has also been proposed that gender bias may play a role, because the NIH spends less on diseases that mainly affect women in relation to disease burden.

In the UK, BBC Sport reports that more than 400,000 people are thought to have ME, although the true figure could exceed one million. Between April 2019 and March 2024 the UK government invested around £6.5 million in research into ME. On 12 May 2026 it announced £4.75 million for SequenceME, which will sequence the genomes of up to 6,000 ME/CFS patients. The chief executive of Action for ME said the new investment must be only a start, because ME/CFS research has been neglected for decades.

In October 2026, the former Olympic sprinter Beth Dobbin wrote to Prime Minister Andy Burnham asking him to fund more research. She said ME has received so little government funding for research over the years compared to other illnesses. As of 21 October 2026, BBC Sport had contacted No 10 for comment on the letter. And the cost? In the United States, estimates of the cost of ME/CFS range from $36 to $51 billion per year, and a 2017 estimate for the United Kingdom was £3.3 billion a year.