After a 27-year-old died, a coroner instructed the NHS to address the "nonexistent" ME care.

In October 2021, Maeve Boothby O'Neill passed away from myalgic encephalomyelitis-related malnutrition.

In her inquest, the coroner took the extraordinary decision to issue a notice of preventive mortality in the future regarding the illness commonly referred to as chronic fatigue syndrome.

Deborah Archer urged Wes Streeting, representatives of the NHS, and other medical organisations to intervene in order to stop further deaths.

Ms. Archer oversaw the inquest into Boothby O'Neill's death, which turned out to be a historic case exposing the dearth of care available to victims.

The 27-year-old, who had suffered with the illness since her adolescence, passed away three years ago. She was confined to her bed, unable to eat or talk.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.

"Ministers must enhance care and treatment for those suffering from the post-viral illnesses ME and Long Covid if they are serious about addressing the issue of long-term sickness. These patients have been neglected for far too long.

As a devastated and heartbroken parent, he continued, "It is my plea that these bodies step up and take steps to prevent future deaths from this awful illness."

Mr. Gwynne made a commitment to advance research, change perceptions, and “better the lives of people with this debilitating disease” in August.