Maeve Boothby-O'Neill

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. 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

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. 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. 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

• August 2024, Maeve Boothby O'Neill Good Morning Britain ITV breakfast TV, 15 minute live segment with Dr Charles Shepherd and Sarah Boothby
• 9 August 2024, The Times view on ME: Legacy of Change An inquest reveals the need to address systemic failure in the UK's treatment of ME, The Times Leader
• 22 July - media coverage, thanks to Adam of Broken Battery (links to X account)
• December 2023, Daughter's death 'could have been avoided' by Jen Smith BBC News Devon; Death prompts Devon Hospital Chief to speak out on 'ignored' illness by Anita Merritt Devonlive
• November 2023, Hospitals have no services for most severe ME cases, Coroner told, by Will Humphries, The Times
• 2023, When the doctor doesn't listen - David Tuller
• 2022, Mum's heartbreak as daughter, 27, loses severe ME battle - Somerset Live
• 2022, Chronic fatigue syndrome patient told: 'You're making it up' - by her father Sean O'Neill, The Times

Learn more

• December 2023, Conversation with Sarah Boothby Dr David M Tuller (audio only)
• August 2023, The writing of Maeve Owen with Sarah Boothby (part 1) Post-Exertional Mayonnaise podcast

• May 2022, A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS archived copy)
• May 2022, Woman's Hour - BBC Radio - Sean O'Neil is interviewed about his daughter, Maeve, who died after years suffering from ME/CFS and not being believed by the medical system. Heartbreaking (second interview)
• 2017, Will I keep getting my Personal Independence Payments? - London Review of Books, written anonymously by Maeve Boothby-O'Neill

See also

• Medical neglect and abuse
• Causes of death
• List of deaths caused by myalgic encephalomyelitis or chronic fatigue syndrome
• Severe and very severe ME
• Malnutrition
• Pediatric
• Severe and very severe ME

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

See post-exertional malaise.

See myalgic encephalomyelitis.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

See chronic fatigue syndrome.