The inquest into the events surrounding the death of Maeve Boothby O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular, ME Research UK selects quotes from each day’s proceedings and provides links to newspaper and media reports. The Inquest will be adjourned on 2nd August and reconvene on 9th August when the Coroner will record her conclusions.
Day 6 – 29 July 2024
non-sitting day
Day 7 – 30 July 2024
I expect that placements at specialist ME units are very hard to get, if this was treated as an ED [Eating Disorder]/MH [Mental Health] presentation then it might be easier to get her a long term bed.
Steve Blackburn, community dietitian at the Royal Devon and Exeter (RD&E) – testimony to Inquest
Day 8 – 31st July 2024
…. [they] can’t find anything medical – feel it is functional – can drink if she wishes to. She is happy to go home but mum not at all happy.
Case Note of conversation between Hospital Consultant and GP – testimony to Inquest
Day 9 – 1st August 2024
I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME,” ….. 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.
Testimony of Sarah Boothby (Maeve’s mother) as reported in The Independent
If she had to die from starvation with severe ME, she (Ms Boothby O’Neill) wanted it to be in the familiarity of home and the care of those she loved. She wanted more than anything a loving hug. By then it was too late for that; hypersensitivity made all touch excruciatingly painful. Maeve was starving to death.
Testimony of Sarah Boothby as reported in The Guardian.
She wanted more than anything, she said, a loving hug. By then it was too late for that, hypersensitivity made all touch excruciatingly painful.
Testimony of Sarah Boothby as reported in Daily Mail
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. Medicine and medics did not know what to do….. This orthodoxy led to Maeve being stigmatised in a way that so many patients are. The view is taken that they are malingerers or feigning illness or somehow parents are responsible. It is a view held by many powerful individuals in the NHS……. She was desperate to live and was full of dreams and hopes. But nor did she want to live a life in the shadows, confined to bed being fed through a tube. I feel her loss every hour of every day.
Statement read on behalf of Sean O’Neill (Ms Boothby O’Neill’s father) by Coroner – The Guardian
Day 10 – 2nd August 2024
Regarding severe ME there needs to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from, …… There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision…. Medicine is driven by the evidence and the paucity of evidence and therefore guidelines surrounding ME, and in particular severe ME, make decision making and management more complicated.
Ms Boothby O’Neill’s GP’s written response to questions – reported in The Irish News.
This is so far out of their comfort zone… the first time people come across this case there is doubt and misunderstanding and it seems to take a variable amount of time for the penny to drop this is ME. It can take months/not at all.
Ms Boothby O’Neill’s GP’s written evidence concerning nurses – reported in The TelegraphInquiry Opens | Week 1 Quotes and Media Coverage | Inquiry Ends | Inquiry Conclusions | Coroner to Issue Prevention of Future Death Report | Actions Reported
Media Coverage
| Woman with ME ‘would have lived if she had been suffering from eating disorder’ | The Telegraph, 30 July 2024 |
| ME patient ‘would have received better care if she had eating disorder’ | The Times, 31st July 2024 (paywall) |
| Maeve Boothby O’Neill inquest: Doctor had ‘never seen’ ME patient with such severe symptoms | itv website , 31st July 2024 |
| Consultant could not find anything medically wrong with woman who died of ME months later | The Telegraph, 31st July 2024 |
| Chronic ME sufferer knew she would starve to death, mother tells inquest | Independent, 1st August 2024 |
| Chronic ME sufferer knew she would starve to death, inquest hears | The Standard, 1st August 2024 |
| Daughter’s death ‘wholly preventable’, says mother | BBC news website, 1st August 2024 |
| Hugs were too painful for ME patient before she died, mother tells Exeter inquest | The Guardian, 1st August 2024 |
| Woman, 27, who died of debilitating ME was desperate for a ‘loving hug’ in her final months but found it too painful to be held, inquest told | Daily Mail, 1st August 2024 |
| GP calls for better funding of research into ME, inquest hears | Irish News, 2nd August 2024 |
| NHS staff treating woman with ME ‘didn’t understand condition’, says doctor | The Telegraph, 2nd August 2024 |
| Family medic who tried to save woman, 27, who died of debilitating ME tells inquest other NHS staff trying to give her care were not even doctors and had ‘lack of understanding’ | Daily Mail, 2nd August 2024 |
| GP who treated woman with severe ME tells inquest more funding is needed | The Guardian, 2nd August 2024 |
| Doctors didn’t accept ME was a medical condition, inquest told | The Times, 2nd August 2024 (paywall) |
| ME: we need more funding and more research | The Guardian, 4th August 2024 |
| Sean O’Neill’s Inquest Statement | Virology Blog, 6th August 2024 (Opinion piece) |
| Whitney Dafoe and Naomi Whittingham Reflect on Severe ME and the Inquest into the Death of Maeve Boothby O’Neill | Virlogy Blog, 8th August 2024 (Opinion piece) |
