Father of ME sufferer calls for ‘radical’ reform in the treatment of the illness

The father of a young woman who died from malnutrition due to having severe chronic fatigue syndrome has called for a “radical” change in the treatment of the disease and said his daughter fell through a “huge hole” in the NHS.

Sean O’Neill spoke out after a coroner found Maeve Boothby-O’Neill, 27, had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.

Miss Boothby-O’Neill had suffered with ME for a decade before she died at home in Exeter in October 2021.

An inquest in Exeter heard Miss Boothby-O’Neill had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.

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.

She had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels.

Her father, a journalist with The Times newspaper, said his daughter’s case was “enormously complicated and distressing” and said the coroner’s findings reflected that.

“Importantly she found that Maeve’s death was as a result of malnutrition caused by her severe ME,” he said.

“Equally importantly she has expressed the hope that care for ME sufferers can improve in future, that the Royal Devon and Exeter Hospital will change its procedures, and such tragic outcomes might be averted in the future.”

Mr O’Neill said there needed to be reform in the treatment of people with ME to avoid another similar case.

“Maeve didn’t just fall through the cracks, she fell into a huge hole in our healthcare system,” he 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 for 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. Imagine a doctor telling a Parkinson’s sufferer or a cancer patient that they had no idea how to treat their illness.

“This is the very definition of a systemic failing. It is not about the failings or negligence 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.”

The inquest heard her mother, Sarah Boothby, was her full-time carer who struggled to look after her daughter on her own.

In June, Miss Boothby-O’Neill had written to her GP asking for help, telling Dr Lucy Shenton: “I don’t understand why the hospital didn’t do anything to help when I went in. I am hungry, I want to eat.

“Please help me get enough food to live.”

She had been admitted three times to hospital for help with her feeding.

A nasogastric tube had been removed due to her vomiting and she was not considered suitable for total parenteral nutrition feeding.

Doctors said they did all they could to help Miss Boothby-O’Neill, who had mental capacity and wished to be treated at home – trying to persuade her to stay at the hospital.

The inquest heard there was a severe shortage of specialist hospital wards to treat ME patients.

Dr Willy Weir, an expert in ME, had written to the chief executive of the hospital a month before Miss Boothby-O’Neill died about her case and the “outdated” views some doctors held about the disease.

Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, recorded a conclusion of natural causes.

“In making the findings I have, I hope that important lessons for future treatment of ME can be learned from her death,” she said.

“No doubt with the benefit of hindsight things will be different in many respects.”

Adrian Harris, chief medical officer at the Royal Devon University Healthcare NHS Foundation Trust, said: “Maeve’s case was an extremely complex and tragic one, and we would like to express our deepest sympathy to her family for their loss.

“We have learned from Maeve’s case and strengthened the information available to staff caring for patients with severe ME.

“The trust will take time to consider in full the coroner’s detailed findings and will take forward learning identified once the coroner has heard evidence on the progress made since Maeve’s tragic death.”

Health minister Andrew Gwynne added: “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.

“I am committed to improving the care and support for all those affected, and we intend to publish a final delivery plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”

A further hearing will take place on September 27 where the coroner will hear evidence about making a Preventing Future Deaths report.