Care for people with severe ME is “nonexistent,” says coroner in call to action

The complete lack of specialist care in England for patients with severe myalgic encephalomyelitis (ME or chronic fatigue syndrome) could cause deaths in future unless urgent action is taken, a coroner has warned.

The hard hitting prevention of future deaths (PFD) report by assistant coroner Deborah Archer on the death of Maeve Boothby O’Neill, 27, also highlighted the lack of research funding, training, and guidelines on treating the condition.

The report, thought to be the first such report on the death of a patient with ME, has been sent to the health and social care secretary, Wes Streeting, and health minister Andrew Gwynne; NHS England; the National Institute for Health and Care Excellence (NICE); the Medical Research Council; the National Institute for Health and Care Research; and the Medical Schools Council.

O’Neill, who was bedbound, died at home in October 2021 after three admissions to the Royal Devon and Exeter …