Young woman died following severe ME

A young woman who suffered for years with severe ME died from malnutrition because 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, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, Deborah Archer, 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 worsened after she completed her A-levels.

The inquest in Exeter heard that Boothby O’Neill was admitted to 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, in her case, it was judged to be unsafe.

The inquest heard that Boothby O’Neill wrote to her GP pleading less than three months before her death asking: “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. She said: “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. 

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

Sarah Boothby added that 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.”

Maeve’s father, Sean O’Neill said: “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.”

Mr 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.

“The health and social care system failed Maeve. It should not be allowed to fail others in future. There must be radical change in the treatment of ME – starting with medical education, greatly improved research and specialist care provision for the most dangerously ill.”