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.

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 or 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 physical illness, 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 inquest continues to gather evidence. Two full weeks of daily hearings are expected from 22 July 2024, with approximately 3 witnesses each day. The public are welcome to attend. A video link may be requested from the Devon Coroners office.

Media coverage

• 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, A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS - ME/CFS Medical Education
• 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

• February 2024, Sarah Boothby discusses second pre-inquest hearing Dr David M Tuller interview
• December 2023, Conversation with Saraah 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.