Woman with chronic fatigue syndrome died after begging GP for help
'Please help me get enough food to live.'
A young woman with chronic fatigue syndrome begged her GP for help just months before she died, an inquest heard.
Maeve Boothby-O’Neill, 27, had written to her doctor asking for help with eating, as she had struggled to sit up.
The inquest in Exeter, Devon, heard she had been confined to bed and was being cared for by her mother.
Maeve, who had been diagnosed with myalgic encephalomyelitis (ME), died at home in Exeter in October 2021.
She had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels, and later struggled to maintain ‘any normality due to fatigue’.
The inquest into her death is focusing on her care from January 2021 until her death, and heard she had been getting weaker, having been unable to feed herself from March.
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.
Maeve had wanted to be treated at home and ‘reluctantly’ agreed to hospital admissions.
On June 18 she wrote to her GP, Dr Lucy Shenton, asking for help: ‘Dear Dr Shenton, I know you are doing your best for me, but I really need help with feeding. I don’t understand why the hospital didn’t do anything to help when I went in. I am hungry, I want to eat.
‘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.’
She had also completed an advanced decisions document about her future treatment if she was unable to communicate her wishes.
In it she wrote: ‘I wish to remain at home and be cared for at home in the community. ME/CFS is a diagnosis by elimination, and I have had every test possible all of which, except one, proved negative.
‘The positive test was for mitochondrial function in blood (2016). The only recommended and reliable treatment for ME/CFS is complete rest remaining below my anaerobic threshold and pacing every activity.
‘I do not seem to have been able to do this despite spending all my time horizontal since January 2021. I agree to admission to hospital for treatment only if there are clearly and fully considered reasons i.e.. hydration and nutrition.
‘When I am in hospital, please enable these medications, supplements and dietary needs. I have been unable to eat solid food since March 19, 2021 having lost the ability to chew.’
Maeve had been admitted three times to the Royal Devon and Exeter Hospital, but was discharged each time and sent home.
Dr Shenton’s colleague, Dr Paul McDermott, told the hearing she ‘ticked all the boxes for very severe ME’.
He told the coroner: ‘As GPs we are not experts and we rely on other people to help us out. We don’t have any other patients who have been anywhere as near severe as Maeve.’
He said he was ‘slightly shocked’ that having admitted her to hospital in March 2021, she was sent home the same day.
He added: ‘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.’
Maeve’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.
She said: ‘Since March 10, 2021 I have been the only person providing care for a person unable to sit, stand or chew. 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?
What is encephalomyelitis and what are the symptoms?
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness.
The main symptoms of ME include:
- feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
- sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
- problems with thinking, concentration and memory (brain fog)
- symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise, or PEM)
‘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.’
In a statement Ms Boothby described her daughter as an ‘exceptional’ child 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. After finishing school, she was too severely affected by ME to go travelling or take up a place at university.’
Her father, Sean O’Neill, a journalist with The Times newspaper, added: ‘Maeve was bright, creative, articulate and opinionated. She was academically gifted, very articulate, and a challenging debater.
‘But I especially wanted it to be remembered that she was a special big sister to Danny and Lily. Her death has been hard for Danny and Lily to understand. Illness stopped them knowing her better, but they knew her love and on her death bed she remembered them.’
The inquest, which is scheduled to last two weeks, continues.
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