Chronic ME sufferer knew she would starve to death, mother tells inquest

A woman suffering from severe chronic fatigue syndrome knew she was going to starve to death, an inquest has heard.

Maeve Boothby-O’Neill, 27, had suffered with myalgic encephalomyelitis ( ME ) for a decade and was being treated at the Royal Devon and Exeter Hospital before she died at home in October 2021.

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

The hearing is focusing on the last 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.

Her mother, Sarah Boothby, said her daughter’s death was “premature and wholly preventable” as malnutrition in cases of severe ME was “common”.

“I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME,” she said.

“I therefore believe her death was both premature and wholly preventable.

“As it is likely that her death could have been prevented, I’m hoping the inquest will try to ascertain how three separate admissions to the Royal Devon and Exeter NHS Hospital Trust failed to save her life.

“As an unqualified but concerned observer, it seemed to me the hospital did not respond to the severity of Maeve’s presentation and failed in its duty of care and missed important opportunities to preserve the right to life.

“It did not refer to published guidance on ME and it did not take available specialist expert advice on how to prevent malnutrition in severe ME.”

Miss Boothby said her daughter needed more nutrition and hydration than she could provide as her full-time carer at home.

“We all relied upon the hospital to instigate this treatment. Why they did not do this I cannot say,” she said.

“They seem to be helpless, even though they had direct access to the best qualified expert advice available in the UK.”

The inquest has heard Miss Boothby-O’Neill was placed on a nasogastric tube for artificial feeding but due to complications it was removed.

An alternative – parenteral feeding through a vein – was rejected because it would be unsafe in her case.

“After being discharged from her final admission, Maeve was deeply distressed,” Miss Boothby said.

“She had not been given the treatment she needed. At home she realised she would not survive another admission without the appropriate tube feeding persistently denied her.

“The hospital would not commit to this. Maeve said she did not want to die in hospital.

“We had tried our best with three hospital admissions, she said, but had failed each time.

“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, she said, for a loving hug.”

Miss Boothby added: “By this stage Maeve was starving to death. She knew it, I knew it, her father knew it, we knew it, the GP knew it.

“How the hospital did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer.

“After Maeve died, GP Dr Lucy Shenton told me she had never seen anyone so badly treated by the NHS.”

Rhys Hadden, representing the hospital trust, told assistant coroner Deborah Archer his client did not accept all of Miss Boothby’s evidence.

“The hospital does not consider that Maeve’s death was preventable,” he said.

“It disagrees with the criticism that it failed its duty of care to Maeve or that there were missed or important opportunities.

“At the time Miss Boothby made her statement in March 2022, it was her recollection of what Dr Shenton had said.

“I am mindful that Dr Shenton has since reflected and said she didn’t say that. She can’t recall saying that. That will be read in in due course.”

Miss Boothby-O’Neill’s father, Sean O’Neill, told the inquest he believed doctors thought ME was a psychological illness.

“ Medicine and medics did not know what to do. Maeve encountered treatments that made her worse, such as exercise programmes, delayed diagnoses, ignorance, apathy and stigma,” he said.

“The medical orthodoxy is that ME is a behavioural problem or a psychological illness and that belief is deeply rooted in the NHS despite growing scientific evidence that it is a physical illness.

“For many years I myself questioned whether ME was a physical condition. I believed the orthodox views expressed in books and articles about ME.

“My scepticism undoubtedly fractured my relationship with Maeve, to my lasting regret and pain.

“It is too late for Maeve but there are signs of attitudes changing.”

Mr O’Neill, a journalist with The Times, added: “I have little faith in the ability of institutions to learn lessons.

“Experience has taught me they tend to guard reputations, individual and corporate, rather than embarking on reform.”

The inquest continues.