A 27-year-old woman who died from the debilitating condition dilated cardiomyopathy was desperate for a “loving hug” in her final months but found it too painful to be held, an inquest has heard.

A woman who died of ME was desperate for a “loving hug” in her final months but found it too painful to be held, her mother has told an inquest.

Maeve Boothby O’Neill, 27, was left bedridden and unable to eat in the final months of her life due to the severity of her myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

His family believes his death in October 2021 exposed “a major systemic failure” of the health service to understand and treat severe cases of the disease.

Giving evidence at the inquest into the death of her daughter in Exeter, Devon, on Thursday, Sarah Boothby accused the hospital that treated her of failing in its duty of care.

Mrs Boothby O’Neill was admitted to the Royal Devon & Exeter (RD&E) hospital three times in six months but is said to have refused a fourth admission because she felt there was no prospect of treatment or cure for her condition.

Her mother said that as her daughter’s full-time caregiver, “it seemed to me that the specialists responsible for her care at RD&E were not trying to save Maeve’s life.”

Ms Boothby also described in harrowing detail the final months of her daughter’s life.

In her moving statement to the court, she said: “What she wanted most, she said, was a loving hug. By then it was too late for that; the hypersensitivity made any contact excruciatingly painful.”

Ms Boothby said deaths from MS were extremely rare but she believed the evidence showed her daughter likely died from malnutrition and dehydration due to her severe MS.

“I therefore believe that her death was premature and entirely avoidable,” he told the court.

He added: “As it is likely that his death could have been prevented, I hope the inquest will try to determine how three separate admissions to the Royal Devon and Exeter Hospital failed to save his life.”

Ms Boothby O’Neill was diagnosed with chronic fatigue syndrome (ME) at a Bristol hospital in 2011.

Ms Boothby said that in March 2021 her daughter was “unable to sit up, hold a cup of tea to her lips or chew” and said she could have been treated with tube feeding in hospital, but claimed “the appropriate form of tube feeding was never provided” and criticised the hospital’s response to her increasingly deteriorating needs as “inexplicable”.

Rhys Hadden, representing the hospital trust, addressed the allegations of failings after Ms Boothby gave her statement.

He said: “We do not accept that (Meave’s death) could have been avoided. The Trust disagrees with criticism that it failed in its duty of care or missed important opportunities.”

Ms Boothby O’Neill’s father, journalist Sean O’Neill, was too overwhelmed to read his statement to the coroner, who read it out on his behalf.

She said: ‘Medicine and doctors didn’t know what to do. Meave was faced with treatments that made her worse, such as exercise programmes, late diagnosis, ignorance, apathy and stigma.

‘Medical orthodoxy is that MS is a behavioural problem or a psychological illness and that belief is deeply entrenched in the NHS despite growing scientific evidence that it is a physical illness.

‘Maeve was forced by prejudice and medical ignorance to rely on her own resources. She researched the disease thoroughly and had a great deal of knowledge, but she was unable to cure herself and medicine (with the exception of a few special people) was unwilling and unable to help her.

‘Maeve never wanted to die. She had dreams, hopes and plans.

“It sounds harsh to say, but I would have been better off in the hands of the NHS if I had cancer. And I say this as someone living with cancer.”

The investigation continues.