A coroner has told the NHS to take action on “nonexistent” ME care in the wake of a 27-year-old’s death.

       Maeve Boothby O’Neill died of malnutrition as a result of myalgic encephalomyelitis in October 2021.

       The coroner in her inquest has now made the unprecedented step of issuing a prevention of future death notice in relation to the condition, also known as chronic fatigue syndrome.

       Deborah Archer called on Wes Streeting, NHS officials and other health bodies to take action to prevent more deaths.

       Ms Archer presided over the inquest into the death of Boothby O’Neill, which has become a landmark case highlighting the lack of treatment available for sufferers.

       The 27-year-old died three years ago having battled with the condition since her teens. It had left her bedbound, unable to speak or eat.

       In the lead up to her death she had been admitted to Royal Devon and Exeter Hospital on three separate occasions, but doctors had been unable to treat her despite her begging for help. She chose to die at home with loved ones rather than return to the hospital.

       Ms Archer wrote: “During the course of the inquest 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 had concluded in August that Boothby O’Neill died from natural causes when doctors were “unable to treat the consequences of her severe ME”.

       The report published on Monday and sent to NHS England and ministers at the Department of Health, declared that her care had been insufficient, and hospital admissions “very difficult for Maeve to endure” because of the lack of expertise on wards.

       The report highlighted the absence of specialist beds across the country for severe ME patients, and called attention to the fact there is no funding available for research into ME.

       Ms Archer said there would be further deaths unless action was taken.

       The coroner also highlighted shortcomings in guidelines from the National Institute of Health and Care Excellence (Nice) regarding how nutrition support should be handled for patients with severe ME.

       The NHS, Nice, Mr Streeting and health minister Andrew Gwynne, have a statutory 56 days to respond to the report.

       Sean O’Neill, father to Maeve and a journalist at The Times, said the report was “short, stark and shocking”.

       “The report is addressed directly to Wes Streeting and I urge him to respond in a constructive and meaningful way,” he said.

       “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.

       He added: “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.”

       In August, Mr Gwynne pledged to boost research, improve attitudes and “better the lives of people with this debilitating disease”.