Inquest into death of Maeve Boothby O’Neill
Cause of Death - Malnutrition Because of ME
Content warning - Severe ME death
After a two week inquest the assistant coroner published a report finding that the cause of Maeve’s death was malnutrition because of ME.
This is a fairly obvious conclusion but with what we have seen in the past with this community being gaslit, it was a relief to see it in writing.
David Tuller attended the inquest and has published, Trial By Error: A Deeper Dive into the Inquest’s “Findings and Conclusions”, that covers the assistant coroner’s report and what comes next. The following quote in the article indicates there is one more step to be done:
“In making the findings that I have I hope that important lessons for the future treatment of ME can be learned from her [Maeve’s] death. No doubt with the benefit of hindsight things would be different in many respects and I look forward to considering these issues with Dr Hemsley on 27th September 2024 in the hope that future death from this disease may be prevented in the future.”
Where is the outrage?
In my opinion, most of the articles missed the mark in regard to expressing the outrage I feel about Maeve’s death (and the others who have suffered and died needlessly and are currently at risk of the same fate as Maeve), so I appreciated the article, Maeve's inquest was a whitewash and the coroner betrayed everyone living with ME/CFS, posted on August 14 written by Steve Topple in the Canary.
The following from the article underscores concerns I have as well. I hope we are proven wrong.
“However, crucially Deborah Archer [assistant coroner] has also set back the entire ME community. By saying there was nothing more the alleged medical professionals at Devon and Exeter could have done, she has given other hospitals a free pass to dismiss other very severe ME patients, their families, and people like William.”
I find it hard to imagine why Deborah Archer neglected to give a stronger response about a young woman being medically neglected to the point of starving to death.
Inquest testimony and findings
These other articles from David Tuller offer some good overall information about the inquest and testimony. (Listed chronologically with the most recent first.)
Trial By Error: Valerie Eliot Smith on the Inquest Findings - 12 August 2024
Trial By Error: Whitney Dafoe and Naomi Whittingham Reflect on Severe ME and the Inquest into the Death of Maeve Boothby O’Neill - 8 August 2024
Trial By Error: Sean O’Neill’s Inquest Statement - 6 August 2024
Trial By Error: Sarah Boothby’s Statement to the Inquest - 5 August 2024
Trial By Error: Dr Weir’s Letters on Treatment of Maeve Boothby O’Neill - 31 July 2024
Trial By Error: Guardian Publishes Response to Boothby O’Neill Inquest from Ranking Member of the CBT/GET Ideological Brigades - 29 July 2024
News coverage
The following is a collection of some of the media reports that arose from the inquest. While we still see some of the harmful psychologizing narrative, I have appreciated that there have been articles and news broadcasts that bring the harsh reality of Severe ME to the public in a way that may break through to those who have been in disbelief that ME can be deadly.
I have not read all of these articles but I thought a listing of the headlines would show what kind of picture was being painted for the wider society who would likely only read the headlines. Some of the articles are behind a paywall.
Listed in chronological order with oldest articles first.
Maeve Boothby O'Neill's inquest has already highlighted how little doctors understand ME/CFS It’s Only Day One - 22 July 2024 - The Canary (Nicola Jeffery)
Father of woman, 27, who died after being 'left bedridden and unable to move due to ME' claims NHS has 'absolutely no specialist service' for the condition - 22 July 2024 - Daily Mail (Jack Hardy and Cameron Roy)
Exeter woman died battling severe ME - 22 July 2024 - Devon Live / Yahoo News (Anita Merritt)
“At today's, July 22, full inquest hearing at Exeter Coroner's Court, assistant coroner Deborah Archer explained that the scope of the inquest would look at Maeve’s care between January 2021 and her death. She said: "We will not be looking for negligence or if a particular individual should be blamed for the care they gave Maeve."”
GP had never seen anyone 'so poorly treated by NHS' after woman died of ME, an inquest heard - 23 July 2024 - Daily Mail (Jack Hardy)
Woman with ME died after begging GP for help, inquest told - 23 July 2024 - Sky News
“Maeve Boothby-O'Neill, 27, died at home in Exeter in October 2021 and the inquest in the city is focusing on her care from the start of that year until her death.”
No NHS wards equipped to deal with severe ME, inquest hears - 23 July 2024 - The Telegraph (Patrick Sawer, Senior News Reporter)
“Maeve Boothby O’Neill died from the debilitating chronic fatigue condition in October 2021 at the age of 27”
NHS wards not capable of treating ME patients, expert tells Exeter inquest - 23 July 2024 - The Guardian (Steven Morris)
“Leading ME doctor said he wrote to hospital chief executive after Maeve Boothby O’Neill’s death”
Woman died after begging GP for help - inquest - 23 July 2024 - BBC (Elliot Ball & PA Media)
“The hearing in Exeter heard that she had told her GP, Dr Lucy Shenton, in June 2021: "Dear Dr Shenton, I know you are doing your best for me, but I really need help with feeding.
"I do not understand why the hospital did not do anything to help when I went in. I am hungry, I want to eat."”
ME patients face specialist bed shortage - inquest - 23 July 2024 - BBC
“Prof David Strain, who works at the Royal Devon and Exeter NHS Foundation Trust, told the inquest: "I do not think there is a ward anywhere in the country that is appropriate to manage ME patients."
The consultant warned that there would be "more Maeves" if the trust was not better prepared.”
One sentence from the coroner accidentally summed up why the NHS failed Maeve - 24 July 2024 - The Canary (Steve Topple) audio available
There are not 'arguments'
NHS staff thought patient’s illness was self-inflicted, inquest told - 24 July 2024 - The Times (Fiona Hamilton, Chief Reporter)
“A consultant says he warned a trust’s chief executive that doctors and nurses with ‘outdated attitudes’ were failing Maeve Boothby O’Neill, who later died of ME”
Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears - 24 July 2024 - Independent (Rod Minchin)
“Maeve Boothby-O’Neill, 27, died at home in Exeter in October 2021 having suffered with the illness for the previous decade.”
ME patient’s consultant tells inquest staff’s unfamiliarity with condition was ‘unfortunate’ - 25 July 2024 - Guardian (Steven Morris)
“Roderick Warren, who treated Maeve Boothby O’Neill, said there was not enough evidence to establish whether illness is a physical one”
Doctors tried 'very hard' to treat Exeter ME patient - inquest - 25 July 2024 - BBC
‘A horrible way to die … and no doctors can help you’ - 26 July 2024 - The Times (Fiona Hamilton, Chief Reporter)
“The family of Maeve Boothby O’Neill hope an inquest into her death at 27 from ME will improve treatment of an illness that still divides the medical community”
Inquest into death of NI reporter’s daughter hears doctor asked ME sufferer to remain in hospital - 26 July 2024 - Belfast Telegraph (Rod Minchin, PA)
“The hearing 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.”
Doctor who sent ME patient home ‘couldn’t find anything medically wrong’ - 31 July 2024 - The Times (Fiona Hamilton, Chief Reporter)
“Maeve Boothby O’Neill, who later died, was at the ‘very severe end of the spectrum’ of the condition but the consultant told an inquest he had received no specific training on treatment”
Inquest into death of NI man’s daughter with chronic ME reveals she ‘knew she would starve to death’ - 1 August 2024 - Belfast Telegraph (Rod Minchin, PA)
“Sean O’Neill told the inquest in Exeter he believed doctors thought ME was a psychological illness.
“Medicine and medics did not know what to do. Maeve encountered treatments that made her worse, such as exercise programmes, delayed diagnoses, ignorance, apathy and stigma,” he said.”
‘I lived, Maeve died’: ME patient who got help writes to coroner - 8 August 2024 - The Times (Will Humphries, Southwest Correspondent)
“As Maeve Boothby O’Neill’s inquest approaches its conclusion, an American sufferer says he is lucky his doctors take the condition seriously”
Woman died from malnutrition due to ME, coroner finds - 9 August 2024 - The Standard (Rod Minchin)
“Maeve Boothby-O’Neill, 27, had suffered with ME for a decade before she died at home in Exeter in October 2021, an inquest heard.”
Father of ME sufferer calls for ‘radical’ reform in the treatment of the illness - 9 August 2024 - Shropshire Star
“Sean O’Neill spoke out after a coroner found Maeve Boothby-O’Neill had died from natural causes ‘because of severe myalgic encephalomyelitis (ME)’”
Devon woman died from malnutrition due to severe ME, coroner concludes - 9 August 2024 - The Guardian (Esther Addley)
“Maeve Boothby O’Neill, who lived with ME for more than a decade, was confined to her bed and unable to chew food”
Treatment changes urged after ME patient's death - 9 August 2024 - BBC (Jen Smith)
“The hearing focused on the last few months of her 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.”
ME sufferer ‘fell through cracks of dismissive’ NHS, says minister- 9 August 2024 - The Sunday Times (Will Humphries)
“Maeve Boothby O’Neill died after doctors ‘repeatedly misunderstood’ her debilitating condition, said Andrew Gwynne after her inquest”
Reliving my daughter’s death was relentlessly heartbreaking - 9 August 2024 - The Times (Sean O’Neill)
Forgotten faces of ME - 'harrowing' inquest, constant agony, and urgent call for change - 10 August 2024 - The Mirror (Julia Banim)
“As the inquest into ME suffer Maeve Boothby-O'Neill concludes, the Mirror looks at other cases of those whose lives have been ripped apart by this cruel and widely misunderstood disease”
‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions - 10 August 2024 - The Guardian (Steven Morris)
“Maeve Boothby O’Neill’s parents tell of desperate efforts to find help and their desire to improve treatment for others”
News Videos
BBC Radio 4 Today - Maeve Boothby-O'Neill Inquest - 20 July 2024 (posted by Broken Battery)
“Sean O'Neill on BBC Radio 4 Today talking about his daughter Maeve Boothby-O'Neill who died of Severe ME in October 2021 and the upcoming inquest which starts on Monday to examine failings in her care.”
Inquest begins into the death of 27-year-old who fought ME for years - 22 July 2024 - BBC News
““Please help me get enough food to live.” The desperate words of Maeve Boothby O Neill, a young woman who died aged just 27 - nine years after being diagnosed with ME, the long term neurological condition which causes debilitating pain and fatigue.
Today her parents were in Exeter, on the first day of the inquest into her death. It heard how her GPs had struggled to get her the care which they thought she needed. “
Maeve Boothby-O'Neill: Mum fears daughter's ME death could 'too easily' happen to someone else - 1 August 2024 - ITV News (Ben McGrail)
BBC Spotlight Inquest Conclusion - 9 August 2024 - BBC Spotlight (Posted by Broken Battery)
“Segment on the Inquest into the death of Maeve Boothby O'Neill featuring interviews with Sean O'Neil and Sarah Boothby. And the sister of another ME Patient Alice.”
27-year-old died from malnutrition due to severe ME, inquest finds - 09 August 2024 - 4 News
“In a statement the Department of Health said “Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.””
Maeve Boothby-O'Neill inquest: Woman died from malnutrition due to ME, coroner finds - 09 August - ITVX
“A young woman died from malnutrition due to having severe chronic fatigue syndrome, a coroner has concluded”
ITV Good Morning Britain - Maeve Boothby O'Neill - 14 August 2024 - (Posted by Broken Battery)
“The mother of Maeve Boothby O’Neill, who died from malnutrition due to severe ME, says that her death was 'wholly preventable'. Also includes interview with Dr Charles Shepherd, Medical advisor to the @MEAssociation”
Blogs
Why Maeve’s Death Must Bring Change - 6 Aug 2024 - A Life Hidden (Naomi Whittingham)
Podcasts
Re-release: The Writing of Maeve Owen read by Sarah Boothby - 27 July 2024 - Post-Exertional Mayonnaise Podcast
“In memory of Maeve Boothby O'Neill, we re-release this episode from 2023 whereby Sarah Boothby reads excerpts from Maeve's unpublished novel, The Alchemists; or Economic Consequences of the peace.”
Maeve Boothby O'Neill: the Chronic Collaboration speaks to Dr William Weir - 19 August 2024 - The Chronic Collaboration
“Maeve Boothby O'Neill died in October 2021 of starvation due to very severe myalgic encephalomyelitis (ME/CFS). After the conclusion of the coroner into her death, Steve Topple of the Chronic Collaboration speaks to Dr William Weir, who was involved in Maeve's case.”
I will update these lists as I am able.
I look forward to hearing whether the meeting on Sept 27th between the assistant coroner and Dr. Hemsley will offer tools for patients in the UK to finally receive life saving care.
May we soon see the change people with myalgic encephalomyelitis need that will lead to safe and effective medical care no matter where they live.
Colleen
PS: Please post in the comments any articles/videos you find that should be added to these lists.
Information provided here or in comments is not to be considered medical advice
It makes me so angry. She died because she received neglectful ‘care’, gaslighting, and malpractice under NHS ‘treatment’. She could have lived. The ME didn’t kill her, the drs who refused to change her tube did. The ones who thought if they starved her she would eventually eat because it’s all in her mind. I don’t believe they COULDN’T treat her, I believe they WOULDN’T. None of them were able to step outside their own little boxes and approach the situation with grace and LEARN what to do, how to treat her, they just stood and watched her die. How that’s part of ‘do no harm’ I don’t know. Grrrrrrrr.
So tragic. I understand gaslighting by the mainstream medical community all too well. I just came from another immunologist appointment for both my husband and I as we have identical immune deficiency, fatigue, etc. He proceeded to tell me/us that nothing was wrong and to seek a therapist. In fact he doesn't want to see us again and doesn't want to monitor our immune systems. My PCP referred me to him and it was a total waste of our time. These doctors are clueless and they don't want to be bothered. My blood pressure must have gone up 80 points listening to this guy. I give up on the mainstream doctors because they cannot and will not help. I really hope the death of Mauve is not in vain and that something good for ME/CFS comes as a result.