Coroner highlights lack of specialist ME care

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

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

The coroner said there was no current available funding for research into and treatment for the chronic fatigue syndrome and there was “extremely limited” training for doctors treating patients.

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

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

Maeve's father, Sean O’Neill, described the coroner’s report as "short, stark and shocking".

He said: "She has found that NHS care for people with severe ME is ‘non-existent’, that medical training is ‘extremely limited’ and research budgets inadequate. She warns there will be further deaths from ME unless action is taken."

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Source: BBC News, 7 October 2023