DismissedWhy people with ME/CFS are still being let down, and what the evidence now says

The crash comes later

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term illness that affects many systems in the body. The World Health Organization classifies it as a post-viral fatigue syndrome under diseases of the nervous system.

Tiredness is not what sets it apart. Its defining feature is post-exertional malaise: a worsening of symptoms after even small amounts of physical, mental or emotional effort. The effort can feel manageable at the time.

The crash is often delayed by hours or days, and it can last days, weeks or longer. That delay is why pushing through looks reasonable to others, and why it can do so much harm.

NICE lists post-exertional malaise as one of four core symptoms, alongside fatigue made worse by activity, unrefreshing sleep, and problems with thinking and memory often called brain fog. Around one in four people with ME/CFS are housebound or bedbound.

What did not change

Maeve Boothby O'Neill died at home in Devon in October 2021, aged 27, after three hospital admissions failed to treat the consequences of her severe ME. In 2024 the coroner, Deborah Archer, found that England had no specialist hospital beds or services for severe ME, no funding available for research into its causes or treatment, and only extremely limited training for doctors.

The government's final delivery plan, published in July 2025, expanded NHS training to three modules and listed several funded research projects. It did not ring-fence new money, and said a specialised service for very severe ME/CFS would be explored subject to funding.

In September 2026 the Guardian columnist George Monbiot asked people with ME/CFS about their recent care and received hundreds of replies. He describes people still steered towards graded activity under new names such as pacing up, parents of ill children accused of fabricating illness, and a freedom of information response showing that, a year after launch, only 74 practitioners had completed the new NHS learning module. He called for a public inquiry. Read the column.

The biology is arriving

In August 2025, DecodeME, the largest genetic study of ME/CFS so far, shared initial results, not yet peer reviewed. It compared the DNA of 15,579 people with ME/CFS with 259,909 people without it, and found eight regions of the genome linked to the illness.

Several point to the immune and nervous systems, at least two to how the body responds to infection, and one had previously been linked to chronic pain. Among the genes the researchers thought most likely to matter, none were linked to depression or anxiety.

A 2025 study of NHS records for more than 62 million people in England estimated that about 404,000 people across the UK have ME/CFS. The lifetime rate in women was about 3.7 times that in men, and diagnosis depended heavily on where people lived: nearly 200 GP practices, mostly in deprived areas, had no recorded patients at all.