Devon woman died from malnutrition due to severe ME, coroner concludes

A young woman who lived for years with severe ME died from malnutrition as a result of her illness, a coroner has concluded.

Maeve Boothby O’Neill, 27, died in October 2021 at her home in Exeter after living with the debilitating disease, also known as chronic fatigue syndrome, for more than a decade.

An inquest in Exeter heard that at the end of her life Boothby O’Neill was confined to bed, unable to chew food and had difficulty drinking because she could not sit up.

At the conclusion of a two-week inquest, Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, found Boothby O’Neill had died from natural causes “because of severe myalgic encephalomyelitis [ME]”.

Boothby O’Neill had experienced fatigue from the age of 13, which got worse after she completed her A-levels.

The inquest in Exeter heard that Boothby O’Neill was admitted to the Royal Devon and Exeter hospital three times in the year before her death for treatment for malnutrition, but refused a fourth admission after being told there was no treatment to alleviate her condition.

She had been placed on a nasogastric tube for artificial feeding while in hospital but it was removed after complications. An alternative – parenteral feeding through a vein – was rejected because it would have been unsafe in her case.

Less than three months before her death, the inquest heard, Boothby O’Neill wrote to her GP pleading “please help me get enough food to live”, and adding: “I am hungry, I want to eat.”

Her mother, Sarah Boothby, told the inquest that by the end she was unable even to hug her daughter. “If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved. She wanted more than anything a loving hug,” she said.

“By then it was too late for that; hypersensitivity made all touch excruciatingly painful. Maeve was starving to death.”

Her daughter had wanted to live, she said. “She did everything she could to survive.”

The coroner said she hoped important lessons would be learned from Boothby O’Neill’s death, but did not find that any of the clinicians who treated her did not believe ME was a “true illness”.

Speaking after the inquest’s conclusion, Andrew Gwynne, the minister for public health and prevention, said: “My deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart wrenching example of a patient falling through the cracks.

“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”

He said he was “committed to improving the care and support for all those affected”, adding that the government would publish a plan this winter “which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease”.

But Sean O’Neill, Maeve’s father, rejected the suggestion his daughter had “fallen through the cracks”. “Andrew Gwynne has spoken of his own battles with long Covid and I know he understands post-viral illness. But Maeve didn’t just fall through the cracks, she fell into a huge hole in our healthcare system,” he said.

He added: “The inquest heard that none of the medical staff treating her had any training or received any education in treating severe ME. Several professionals did not believe her illness was ‘real’. At the end of her life palliative care was delayed because of that disbelief.

“The coroner was told there were no specialist units, no wards, not even a bed anywhere in the NHS treating severe ME. There were no policies, protocols or guidelines for the treatment of ME in 2021 and there are still none today.

“Imagine that being the case for any other serious, life-limiting or life-threatening illness.”

O’Neill said this was “the very definition of a systemic failing. It is not about the failings of individuals or a single hospital. It is about the entire system that should protect, or at least try to protect, those with severe ME”.

He added: “The health and social care system failed Maeve. It should not be allowed to fail others in future.”

A hearing will be held next month into whether the coroner will issue a prevention of future deaths report.