Woman, 27, who died of debilitating ME was desperate for a ‘loving hug’ in her final months but found it too painful to be held, inquest told

A woman who died from ME desperately needed a “loving hug” in her final months but found it too painful to be held, her mother told an inquest.

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

Her family believes her death in October 2021 highlighted a “major systemic failure” by the health service when it comes to understanding and treating severe cases of the condition.

Sarah Boothby gave evidence at the inquest into the death of her daughter in Exeter, Devon, on Thursday, accusing the hospital where she was treated 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.

Sean O’Neill, journalist for The Times, pictured with his daughter Maeve who died in October 2021

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

Mrs. Boothby also described in painful detail the last months of her daughter’s life.

She said in her moving statement to the court: ‘More than anything, she said, she wanted a loving hug. By then it was too late for that, hypersensitivity made all touch unbearably painful.’

Mrs Boothby said deaths from ME were extremely rare, but she believed the evidence showed her daughter probably died from malnutrition and dehydration due to her severe ME.

“I therefore believe that her death was both premature and entirely preventable,” she told the court.

She added: ‘Given that it is likely that her death could have been prevented, I hope the inquiry will seek to establish how three separate admissions to the Royal Devon and Exeter Hospital failed to save her life.’

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

Ms Boothby said that by 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 at the hospital via a feeding tube. However, she claimed that the ‘correct form of tube feeding was never provided’ and criticised the hospital’s response to her deteriorating needs as ‘inexplicable’.

Rhys Hadden, representing the hospital, responded to the allegations of failings after Ms Boothby made her statement.

He said: ‘We do not accept that (Meave’s death) was preventable. The Trust disagrees with criticisms that it failed in its duty of care or missed significant opportunities.’

Mrs Boothby O’Neill’s father, journalist Sean O’Neill, was too stunned to read his statement to the coroner, who read it aloud on his behalf.

Mrs Boothby-O’Neill was admitted to the Royal Devon & Exeter Hospital (pictured) three times, during her second visit she told doctors she wanted to be discharged, the inquest heard.

It said: ‘Medicines and medical professionals didn’t know what to do. Meave was subjected to treatments that made her worse – such as exercise programs – delayed diagnoses, ignorance, apathy and stigma.

‘The medical orthodoxy is that ME is a behavioural problem or a mental illness. This belief is deeply entrenched in the NHS, despite the growing scientific evidence that it is a physical illness.

‘Maeve was forced by medical prejudice and ignorance to rely on her own resources. She researched ME in depth and was very knowledgeable, 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 seems harsh to say, but she would have been better off in the hands of the NHS if she had cancer. And I say this as someone who is living with cancer.’

The investigation is still ongoing.