Maeve Boothby-O'Neill

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picture of a smiling young woman with curly brown hair
Maeve Boothby O'Neill on her 18th birthday.

Maeve Boothby O'Neill was a young British woman who died from very severe ME on October 3, 2021, aged just 27 years old.[1][2] Maeve Boothby O'Neill was a promising writer, a natural scholar and talented at languages. She was diagnosed after 4 years of unrecognised illness, shortly before her 18th birthday. She was writing The Alchemists, the first of a series of novels, set on Dartmoor where she grew up in Devon, England, when she died. Maeve's father, Sean O'Neill, used his position as senior writer at The Times to write about how Maeve died, attracting the interest of his peers and extensive coverage of the inquest in July and August 2024.

Illness[edit | edit source]

Medical neglect was a major contributing factor in her death: Boothby O'Neill became too unwell to consume enough calories and became progressively malnourished and dehydrated, but NHS hospital doctors refused to weigh the risk of death with the risks from tube feeding.[1] After eventually inserting a NG tube, medical staff then insisted on attempting to feed her triple what she had previously been taking orally, compounding post-exertional malaise that then prevented all forms of activity, including taking any nourishment and speech.[3] The hospital had already refused to consider alternative types of feeding tube such as a TPN, continuing to wrongly believe blood tests which showed she was physically fit and therefore capable of spontaneous recovery. NHS hospital doctors were blind to her steady deterioration, ignoring her inability to move, chew, or swallow more than 15ml at a sip. An inquest was opened immediately by Exeter and Devon Coroners. At a pre inquest hearing in November 2023 it emerged that the NHS has no policy and no facilities for treating severe (housebound) or very severe (bedbound) patients anywhere in the United Kingdom.

The full inquest was heard over 14 days in July and August 2024. Hundreds of people from across the globe followed the hearings online every day, causing the court's IT to crash repeatedly. The Assistant Coroner, Ms Deborah Archer, concluded on Friday 9 August; Maeve died from natural causes (malnutrition secondary to ME). Ms Archer's findings were published on Tuesday 13 August (Devon Coroner's Court, case ref 8057264). UK news outlets reported on the inquest daily, attracting subsequent interest from mainstream outlets where the absence of any NHS provision and/or biomedical research into ME was sympathetically discussed. A leader in the Times optimistically commented Maeve's death had contributed a 'legacy of change'. Meanwhile the ongoing refusal of other NHS hospitals to deliver parenteral feeding, to equally unwell young women struggling to survive very severe ME, went unreported [Karen Gordon - citation needed].

A Prevention of Future Death's report is due to be considered 10am Friday 27 September 2024. The public is welcome to apply to join the proceedings online, coroner@devon.gov.uk case ref 8057264

Media coverage[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 Merritt, Anita; Rogers, Paul (September 29, 2022). "Mum's heartbreak as daughter, 27, loses severe ME battle". SomersetLive. Retrieved July 25, 2023.
  2. ↑ Sandeman, George (July 25, 2023). "Chronic fatigue syndrome patient told: 'You're making it up'". ISSN 0140-0460. Retrieved July 25, 2023.
  3. ↑ Tuller, David (January 27, 2023). "When the doctor doesn't listen". Coda Story. Retrieved August 13, 2023.
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