A coroner has highlighted the lack of specialist care for myalgic encephalomyelitis (ME) patients following the death of a 27-year-old woman.

Deborah Archer has spoken out following the death of Mae Boothby-O’Neill, who suffered from ME for a decade before dying from severe malnutrition at home in Exeter in October 2021.

The coroner said there is currently no funding available for research and treatment of chronic fatigue syndrome and there is “extremely limited” training for doctors treating patients.

Ms Archer, assistant coroner for Devon, Plymouth and Torbay, wrote a report recording her concerns about preventing future deaths.

The coroner had previously concluded that Miss Boothby-O’Neill had died of natural causes “due to severe myalgic encephalomyelitis (ME)”.

The inquest heard she was admitted to the Royal Devon and Exeter Hospital three times in 2021 for treatment for malnutrition.

The 10-day hearing focused on the last few months of her life, during which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit.

Miss Boothby-O’Neill had suffered from fatigue since the age of 13, which became worse after completing her A-levels.

The coroner said the evidence showed there were no specialist hospitals or hospices, beds, wards or other health care provisions in England for patients with severe ME.

She wrote: “This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.”

Ms Archer said the 2021 GOOD guidelines on ME do not provide any detailed guidance on how severe ME should be managed at home or in the community.

“And whether there are any necessary adaptations needed to the 2017 guidance on nutrition support specifically for adults: oral nutrition support, enteral tube feeding and parenteral nutrition,” she wrote.

The coroner has sent his report to the Department of Health and Social Care, 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.

Maeve’s father, Sean O’Neill, a journalist for The Times newspaper, described the coroner’s report as “concise, harsh and shocking”.

She said: “They found that NHS care for people with severe ME is ‘non-existent’, medical training is ‘extremely limited’ and the research budget is inadequate. She warns that unless action is taken, there could be more deaths from ME. Will be.”

“The report is addressed directly to (Health Secretary) Wes Streeting and I urge him to respond in a constructive and meaningful way.

“People suffering from post-viral diseases ME and Long Covid have been neglected for too long.

“If ministers are serious about tackling the problem of long-term disease they must improve the care and treatment of sufferers.

“The coroner has also sent copies of his report to the NHS, the Medical Schools Council, medical research funders and Nice.

“As a heartbroken and heartbroken father it is my plea that these organizations step forward and take action to prevent future deaths from this terrible disease.”

A Department of Health and Social Care spokeswoman said: “Our deepest sympathies go to Maeve’s family and friends in this tragic case.

“Every patient has the right to have their condition understood and treated to the highest standard, and this is a heartbreaking example of a patient falling through the cracks.

“Maeve and her family were forced to fight the disease along with a health care system that repeatedly misunderstood and rejected her.

“It is important that we learn lessons from each report to prevent future deaths, and we will consider reports carefully before responding appropriately.

“We are committed to improving care and support for all those affected, and we intend to publish a final delivery plan this winter that will promote research, improve attitudes and education, and prevent and treat this debilitating disease. Will focus on improving the lives of the affected people.”

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