'Please help me' - woman who died after ME left her unable to eat begged for help in letter to GP

A young woman who suffered from chronic fatigue wrote to her GP begging for help just months before she died, an inquest heard.

Maeve Boothby-O’Neill died of severe myalgic encephalomyelitis (ME) at her home in Exeter in October 2021. She was just 27 years old.

In the lead-up to her death, Miss Boothby-O’Neill wrote to her GP asking for help with feeding, writing: "I'm hungry, I want to eat. I've been unable to eat. I'm unable to sit up."

Miss Boothby-O’Neill had been suffering from fatigue since contracting a viral infection at the age of 12.

It left her with a feeling of exhaustion which got significantly worse over time and she was diagnosed with ME five years later.

The condition - 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 into her death is being held in Exeter, focusing on her care from January 2021 until her death in October 2021.

Exeter and Greater Devon Coroner’s Court heard that in January of that year, Miss Boothby-O’Neill was confined to her bed and was being cared for by her mother. By March, she could not stand up, chew food or feed herself.

According to medical notes, by July she was unable to read, watch TV or engage in conversations, and was only getting out of bed to use the toilet.

She was also unable to chew food and had difficulty drinking because she was not able to sit up.

Miss Boothby-O’Neill was "reluctantly" admitted three times to the Royal Devon and Exeter Hospital (RD&E), but was discharged each time and sent home.

A GP from Miss Boothby-O’Neill's surgery gave evidence on day one of the inquest. He said he was was “slightly shocked” that, having admitted her to hospital in March 2021, she was sent home the same day.

“I am very aware we were in the pandemic and the hospital was full of Covid-19 patients but I was surprised she was discharged that day,” Dr McDermott said.

Reading from hospital notes sent to the practice, he said the hospital could not find any medical reason to keep her there.

The notes stated that Miss Boothby-O’Neill's mother was not at all happy as she felt the only reason her daughter was ok was because she had stepped in to keep her fed and hydrated.

Miss Boothby-O’Neill’s mother, Sarah Boothby, wrote to the GP practice manager in the April wanting to know what had “gone badly wrong” with the care of her daughter.

“Since March 10 2021 I have been the only person providing care for a person unable to sit, stand or chew,” she wrote.

“This is a long-term chronic condition without prognosis or treatment protocol. What is the plan for hydration, liquid, nourishment and transfers to a bedside commode in the community?

“You had arranged to speak by phone to me before the pandemic in February 2020. You didn’t call as arranged then and when I rang the surgery, they told me you were off sick.

“This case was urgent then and it is very urgent now.”

On 18 June, Miss Boothby-O’Neill herself wrote a heartfelt note to her GP asking for help.

"I know you are doing your best for me, but I really need help with feeding," she wrote. "I don’t understand why the hospital didn’t do anything to help when I went in. I am hungry, I want to eat,” she wrote.

“I have been unable to sit up or chew since March and the only person helping me eat is my mum. I cannot get enough calories from a syringe.

“Please help me get enough food to live.”

Ms Boothby described her daughter as an “exceptional” child, a "compelling" jazz singer and an A-grade student.

“She loved learning languages, she had a lively and active interest in world affairs. She looked forward to travelling beyond the UK after finishing school,” she said.

“After finishing school, she was too severely affected by ME to go travelling or take up a place at university.”

Miss Boothby-O’Neill's father, Times journalist Sean O'Neill, described her as "bright, creative, articulate and opinionated" saying she was academically gifted, very articulate and a challenging debater.

"I especially want it remembered that she was a special big sister to Danny and Lilly. Despite her ME restricting her ability to see them, she maintaned a special bond."

The inquest, which is scheduled to last two weeks, continues.

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