Address ‘non-existent’ severe ME care or risk further deaths, UK health minister told

A coroner has urged the UK health secretary, Wes Streeting, to urgently address the “non-existent” care available to people with severe ME or risk further deaths like that of 27-year-old Maeve Boothby O’Neill.

The Devon coroner, Deborah Archer, who heard Boothby O’Neill’s inquest, also called on the UK government and NHS leaders to make sure there is more training for medics on treating patients with myalgic encephalomyelitis, and additional funding for research on the condition.

In her prevention of future deaths report, believed to be the first of its kind involving ME, Archer wrote: “The inquest heard that provision of care for patients with severe ME such as that which Maeve suffered from was and is non-existent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure.”

Boothby O’Neill died in October 2021 at her home in Exeter after living with ME, also known as chronic fatigue syndrome (CFS), for more than a decade. The coroner heard there was not a single bed in England set aside specifically for the treatment of a patient with severe ME.

Archer wrote: “The evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”

She said: “It became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME. This meant that the Royal Devon and Exeter hospital [where Boothby O’Neill was admitted] had no commissioned service to treat Maeve and patients like her.”

The coroner also said: “During the course of the inquest it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME/CFS.”

Archer said it had emerged that there was “extremely limited training for doctors on ME/CFS and how to treat it – especially in relation to severe ME.”

Boothby O’Neill’s father, Sean O’Neill, a Times journalist, described the report as stark and shocking.

He said: “She [the coroner] has found that NHS care for people with severe ME is non-existent, that medical training is extremely limited and research budgets inadequate. She warns there will be further deaths from ME unless action is taken.

“The report is addressed directly to Wes Streeting and I urge him to respond in a constructive and meaningful way. People with the post-viral illnesses ME and long Covid have been neglected for too long; if ministers are serious about tackling the problem of long-term sickness they must improve care and treatment for sufferers.

“The coroner has also sent copies of her report to the NHS, the Medical Schools Council, the medical research funders and NICE. It is my plea, as a grieving and heartbroken father, that these bodies step up and take steps to prevent future deaths from this awful illness.”

Boothby O’Neill’s mother, Sarah Boothby, said: “Maeve was an A* scholar who loved to learn. She knew from living with the condition how ME affects every part of the body, metabolism included, but also how every institution supposed to help did nothing but fail her.

“There were countless times when professionals should have intervened to prevent her premature death. Maeve knew it. I knew it. ME is a post-infection illness. Since Covid there are hundreds of thousands of people who know it.”