The coroner who investigated the death of a young woman from debilitating ME has demanded further action to stop more tragedies.
CoronerDeborah Archer, who held a two-week inquest into the death of 27-year-oldMaeve Boothby-O'Neill, wrote in her report that 'future deaths could occur unless action is taken.'
Ms Boothby-O'Neill was found by a coroner to have died from extreme malnutrition due to severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome.
The inquest, which concluded in August, heard Ms Boothby-O'Neill had been admitted to the Royal Devon and Exeter Hospital three times in 2021 for treatment - but there is a lack of specialist beds for ME across the UK.
The severity of her condition left her unable to eat or speak, and drinking was also difficult due to her body being so weak that she could not sit up.
In June 2021, she had written to her GP asking for help, saying: 'I don't understand why the hospital didn't do anything to help when I went in.
'I am hungry, I want to eat. Please help me get enough food to live.'
Maeve Boothby-O'Neill was found by a coroner to have died from malnutrition due to severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome
The inquest heard how Maeve, 27, (pictured as a girl)had written to her GP asking for help in 2021
Now the coroner has called on Health Secretary Wes Streeting, NHS officials and other health bodies to take urgent action.
Ms Boothby-O'Neill, the daughter of mother Sarah Boothby and journalist father Sean O'Neill, had suffered from severe ME since her teenage years, having initially suffered from fatigue aged just 13.
In the last few months of her life she was confined to a bed, unable to chew food and had difficulty drinking because she was unable to sit up.
Despite repeated admissions to hospital, a lack of expertise and research into ME meant doctors were unable to treat her.
Her mother Sarah Boothby became her full-time carer, while she worked part-time during the Covid lockdown.
The 27-year-old chose to die 'in the care of those she loved' at home, rather than in hospital.
The prevention of future deaths report described how Ms Boothby-O'Neill was only tube-fed during one admission to hospital, and it was not enough to recover from her weak condition.
Coroner Archer described the care for patients with severe ME as 'non-existent' and that training for doctors in the condition is 'extremely limited'.
Ms Archer, who is the assistant coroner for Devon, Plymouth and Torbay, submitted her report to the Department of Health and Social Care, NHS England, the National Institute for Health and Care Excellence (Nice), the Medical Research Council, the National Institute for Health and Care Research, and the Medical Schools Council recording her concerns.
Journalist Sean O'Neill said his daughter Maeve Boothby-O'Neill, 27, 'fell into a huge hole in our healthcare system' and doctors had failed to help her ME symptoms
Maeve's mother, Sarah Boothby,was her full-time carer and struggled to look after her daughter on her own. The 27-year-old had been admitted three times to hospital for help with her feeding
She wrote: 'During the course of the evidence, it became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME.
'This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.
'During the course of the inquest, it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME.
'During the course of the inquest it became clear that there was extremely limited training for doctors on ME and how to treat it - especially in relation to severe ME.
'During the course of the inquest it became clear that the 2021 Nice guidelines on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.'
Ms Boothby O'Neill's mother, Sarah Boothby, said: 'Maeve was an A* scholar who loved to learn. She knew from living with the condition how ME affects every part of the body, metabolism included, but also how every institution supposed to help did nothing but fail her.
'There were countless times when professionals should have intervened to prevent her premature death. Maeve knew it. I knew it. ME is a post-infection illness. Since Covid there are hundreds of thousands of people who know it.'
Sean O'Neill said: 'The coroner's report is short, stark and shocking. She has found that NHS care for people with severe ME is 'non existent', that medical training is 'extremely limited' and research budgets inadequate. She warns there will be further deaths from ME unless action is taken.
Her father, Sean O'Neill, a journalist with The Times newspaper, previously described how his daughter fell through a 'black hole' in treatment.
Speaking after the report, he added: 'The coroner's report is short, stark and shocking - she has found that NHS care for people with severe ME is 'non existent', that medical training is 'extremely limited' and research budgets inadequate. She warns there will be further deaths from ME unless action is taken.
'The report is addressed directly to (Health Secretary) Wes Streeting and I urge him to respond in a constructive and meaningful way.
'People with the post-viral illnesses ME and long Covid have been neglected for too long.
'If ministers are serious about tackling the problem of long-term sickness they must improve care and treatment for sufferers.
'The coroner has also sent copies of her report to the NHS, the Medical Schools Council, the medical research funders and Nice.
'It is my plea, as a grieving and heartbroken father, that these bodies step up and take steps to prevent future deaths from this awful illness.'
A Department of Health and Social Care spokeswoman said: 'Our deepest sympathies are with Maeve's family and friends in this tragic case.
'Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.
'Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.
'It is important that we learn the lessons from every prevention of future deaths report, and we will consider the report carefully before responding appropriately.
'We are committed to improving the care and support for all those affected, and we intend to publish a Final Delivery Plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.'
