Woman who died of debilitating ME was determined for a ‘loving hug’

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 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).

Her family believe her death in October 2021 exposed ‘a major systemic failing’ of the health service to both understand and treat severe cases of the condition.

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

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

Maeve Boothby O’Neill, 27, (pictured) was left bedridden and unable to eat in the final months of her life due to the severity of her myalgic encephalomyelitis (ME)

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

Her mother said that, as her daughter’s full time carer, ‘it seemed to me the consultants responsible for her care at the RD&E were not trying to save Maeve’s life’.

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

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

Ms Boothby said that deaths from ME were extremely rare, but she believed the evidence showed that her daughter likely died from malnutrition and dehydration because of her severe ME.

‘I therefore believe her death was both premature and wholly preventable,’ she told the court.

She added: ‘As it is likely her death could have been prevented, I am hoping the inquest will try to ascertain how three separate admissions to the Royal Devon and Exeter Hospital failed to save her life.’

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

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

Rhys Hadden, representing the hospital trust, addressed the accusations of failings after Ms Boothby had given her statement.

He said: ‘We do not accept it (Meave’s death) was preventable. The Trust disagrees with the 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 aloud on his behalf.

Miss Boothby-O’Neill had been admitted to the Royal Devon & Exeter hospital (pictured) three times, during her second visit she told doctors she wished to be discharged, the inquest heard

It said: ‘Medicine and medics did not know what to do. Meave encountered treatments that made her worse – such as exercise programmes – delayed diagnoses, ignorance, apathy and stigma.

‘The medical orthodoxy is that ME is a behavioural problem or a psychological illness and that belief is deeply rooted in the NHS despite 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 great depth and was extremely knowledgeable, but she was unable to cure herself and medicine (with the exception of just a few special people) was unwilling and unable to help her.

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

‘It seems a harsh thing to say but she would have been better off on the hands of the NHS if she had had cancer. And I say this as someone who is living with cancer.’

The inquest continues.