Maeve Boothby-O'Neill inquest: Woman died from malnutrition due to ME, coroner finds

• ITV News' Richard Lawrence heard the coroner's conclusion in Exeter.

A young woman died from malnutrition due to having severe chronic fatigue syndrome, a coroner has concluded.

Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, said Maeve Boothby-O’Neill, 27, had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.

Miss Boothby-O’Neill had suffered with ME for a decade before she died at home in Exeter in October 2021.

An inquest in Exeter heard Miss Boothby-O’Neill had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.

ME - which is sometimes known as chronic fatigue syndrome, or CFS - can cause extreme tiredness, pain, brain fog and sleep problems.

For Miss Boothby-O’Neill, it got significantly worse after she completed her A-levels and she eventually struggled to maintain any normality due to fatigue.

An inquest was held into her death, focusing on her care from January 2021 until she died in October 2021.

Ms Archer said when recording her conclusion on Friday 9 August said she'd read 6,400 pages of evidence during the inquest.

She said she hoped important lessons will be learned from Maeve's death and she said she did not find any of the clinicians who treated Maeve did not believe ME was a 'true illness'

Sean O’Neill, Maeve’s father, reflected on how the condition stalled his daughter's life.

He said: “She should have been at university, she should have been having a fantastic career somewhere, but she was just struck down by this horrible illness that just slowly over years, bit by bit, took her away. 

“Took away her promise, her independence, her hopes and eventually her life.” 

Sarah Boothby, Maeve’s mother, said school work and exams were her focus, with the end goal being university. 

She said: “She spent her whole life working towards university. The irony of Maeve was that even when they were testing her before she died, she was still coming out with top marks.”

Maeve's mother said at first they were under the impression the condition would simply delay her enrolment in university, so the prospect of her being at home for longer was actually a positive. 

“For me, as a parent because she was my only child, that was a bit of a gift because I was bracing myself at the empty nest and being full of grief at her leaving home," Sarah said.

However, it soon became apparent that Maeve wasn’t going to get better. 

Her mother said: “Maeve got ME before she reached adulthood, so her adulthood was marred by illness because she was never well enough to leave home.

“For me, her growing up into a disabled adult was heartbreaking on the one hand and very stressful on the other."

Sean and Sarah were no longer living together when Maeve got ME, meaning he was in London whilst she was in Exeter. He said this made things very difficult. 

He said: “As she became more and more ill it became harder for her to have visitors. It was incredibly painful for all of us. Eventually she was completely housebound and bed-bound.” 

He recalled the first signs of something being wrong when Maeve could no longer join in with PE at school.

“I remember picking her up from school when she was about 13, which was when we now think she’d had a virus that triggered the ME, picking her up and she’d fainted whilst doing cross country running.” 

Both of Maeve's parents said they try to remember her as she was before the ME. 

Sean said: “She told me near the end to remember the good times. This inquest process has been incredibly hard because you need to go through a legal dissection of her death and her worst days, but I will endeavour to remember her as a wonderful girl.

“She wouldn’t want to be defined by this illness, she was a much bigger person than that.”

Sarah said: “She was the best company I’ve ever known. She was very funny very quick-witted. She had a natural grace about her.

“Her death has touched a lot of people, the good person she was came through in the inquest too."

They said they want this inquest to improve treatment for other people experiencing ME. 

Sean said: “My purpose has been to raise awareness of ME. We’ve heard none of the doctors had any training and therefore had little knowledge of ME.

"There are no specialist wards for people with ME anywhere in the country, we know there’s a woeful lack of research, we need all those things addressed, and really really urgently.”

Sarah said: “The thing that worries me most is that this is just an inquest, and that it’ll disappear with tomorrow’s news. The question is where is the change going to come from?”