A coroner has concluded that a young woman who suffered from severe ME for years died from malnutrition as a result of her illness.
Maeve Boothby O’Neill, 27, died at her home in Exeter in October 2021. She had been living with the debilitating disease, also known as chronic fatigue syndrome, for more than a decade.
An inquest in Exeter heard that Boothby O’Neill was bedridden towards the end of her life, unable to chew food and had difficulty drinking because she could not sit up.
At the end of a two-week inquest, Deborah Archer, assistant coroner for Exeter, Plymouth, South Devon and Torbay, concluded that Boothby O’Neill had died from natural causes “as a result of severe myalgic encephalomyelitis (ME)”.
Boothby O’Neill had suffered from fatigue since she was 13. This fatigue became worse after she finished her A-levels.
The inquest in Exeter heard that Boothby O’Neill had been admitted to the Royal Devon and Exeter Hospital three times in the year before her death for treatment of malnutrition, but refused a fourth admission after being told there was no treatment to alleviate her condition.
She was placed on a nasogastric tube for artificial nutrition in the hospital, but this was removed after complications. An alternative – parenteral nutrition 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 a letter to her GP asking: “Please help me get enough food to live”, adding: “I am hungry, I want to eat.”
Her mother, Sarah Boothby, told the inquest that eventually she could no longer even hug her daughter. “If she was going to starve to death with severe ME, she wanted to do it in the comfort of her home and in the care of her loved ones. She wanted a loving hug more than anything,” she said.
“By then it was too late for that; hypersensitivity made all touch unbearably painful. Maeve was starving to death.”
Her daughter 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 she did not find that any of the doctors who treated her did not believe ME was a “real illness”.
Speaking after the inquest, Andrew Gwynne, the Minister for Health and Prevention, said: “My deepest condolences 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 heartbreaking example of a patient slipping through the net.
“Maeve and her family were forced to battle the disease alongside a healthcare system that repeatedly misunderstood and rejected her.”
He said he was “determined to improve 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 improving the lives of people living with this debilitating disease”.
But Sean O’Neill, Maeve’s father, rejected suggestions his daughter had “fallen through the cracks”. “Andrew Gwynne has spoken about his own battle with long Covid and I know he understands post-viral illness. But Maeve hasn’t just fallen through the cracks, she’s fallen into a huge hole in our health system,” he said.
He added: “The inquiry heard that none of the medical staff who treated her had any training or education in the management of severe ME. Several professionals did not believe her illness was ‘real’. Towards the end of her life, palliative care was delayed because of that disbelief.
“The coroner was told that there were no specialist units, no departments, not even a bed anywhere in the NHS for the treatment of severe ME. There were no policies, protocols or guidelines for the treatment of ME in 2021 and there still are none today.
“Imagine if this were also true for any other serious, life-limiting or life-threatening illness.”
O’Neill said this was “the definition of a systemic failure. It’s not about the failure of individuals or a single hospital. It’s about the whole system that should be protecting, or at least trying to protect, people with severe ME.”
He added: “The health and social care system failed Maeve. It must not fail others in the future.
“There needs to be a radical change in the treatment of ME – starting with medical education, vastly improved research and specialist care for the most dangerously ill.”
Andrew Gwynne, Health Secretary, said: “Maeve and her family were forced to battle the disease alongside a health system that repeatedly misunderstood and rejected her.
“I am committed to improving care and support for all those affected and we plan to publish a final delivery plan this winter that will focus on stimulating research, improving attitudes and education, and improving the lives of people living with this debilitating disease.”
A hearing will be held next month to determine whether the coroner will issue a report on preventing future deaths.