Doctors treating a young woman who died after suffering from debilitating ME for a decade have denied any medics claimed her illness was not ‘physical’, an inquest heard.
Maeve Boothby-O’Neill, 27, died at home in Exeter in October 2021 having suffered with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
The inquest in Exeter heard Miss Boothby-O’Neill had been admitted to Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.
On the first occasion, in March, she was sent home the same day. She was admitted for the second time in May and discharged a few weeks later with medics content about her nutritional intake.
As she continued to worsen, she was readmitted in July to the eating disorder ward but later sent home.
Maeve Boothby O’Neill, 27, was left bedridden and unable to eat in the final months of her life due to the severity of her myalgic encephalomyelitis (ME)
Sean O’Neill, a journalist for The Times, pictured with her daughter
The inquest in Exeter is focusing on the last few months of Miss Boothby-O’Neill’s 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.
Dr Ovishek Roy, a consultant gastroenterologist, told the hearing: ‘I do believe that everyone involved tried very hard to get the basics right, act in her best interest, discuss and get advice when needed and so on.
‘I do believe everyone tried their absolute best. It is deeply sad, all of this. Without getting too personal I lost a sister at similar age to Maeve, so I understand your loss to some extent.
‘This was very, very sad and we were trying very hard and that’s why I remained involved, as did the intestinal failure dietician.
‘It wasn’t part of our remit to remain involved, but we did because we knew how difficult it was and to try and to help each other.
‘This was a desperately sad case from the very beginning, and I got involved and remained involved because it was so challenging. Anyone who isn’t eating or drinking… their life is at risk… regardless of their underlying pathology.
‘There was huge concern that Maeve wasn’t going to survive because she couldn’t be nourished. In terms of accepting how at risk her life was, that was obvious from the start.’
The inquest heard Miss Boothby-O’Neill was placed on a nasogastric tube for artificial feeding during her third hospital admission but due to complications it was removed.
Despite being admitted three times to the Royal Devon and Exeter Hospital (pictured), Ms Boothby O’Neill was discharged each time and sent home
Dr Roy said the further use of the tube was ruled out because of Miss Boothby-O’Neill’s express wishes, and parenteral feeding through a vein was rejected because it would be unsafe in her case.
‘It would almost certainly lead to line sepsis and death,’ he said. ‘Having not been able to achieve the required sterile conditions parenteral feeding would have been fatal.
‘In this case we knew for sure we would not be maintaining a non-sterile environment. We can be pretty confident starting parenteral feeding would be dangerous and high risk of fatality.’
Miss Boothby-O’Neill’s father, Sean O’Neill, a journalist with The Times, asked Dr Roy: ‘I feel I didn’t do everything in my power to help her. Do you think the Royal Devon and Exeter Hospital did everything it possibly could to save Maeve’s life?’
Dr Roy replied: ‘Unfortunately we hit those two blocks – that of Maeve’s capacity which was intact and we could not go with the nasogastric feeding against her wishes, and that of hygiene so parenteral was not an option.
‘It is very sad, but I hope you get some reassurance that everything that could have been tried was tried.’
Dr Roy said he had never treated an ME case as severe as Mr O’Neill’s daughter before but rejected suggestions doctors at the hospital did not regard it is as a physical illness.
‘There was no debate whether ME was a real condition,’ he said. ‘I am not saying I thought it was a psychiatric problem. I am fully accepting of everyone advising me of what ME is.’
The inquest, which is due to last two weeks, continues.
