Hugs were too painful for ME patient before she died, mother tells Exeter inquest

A woman who died with severe ME was desperate for a “loving hug” as she neared the end of life but her hypersensitivity made all touch “excruciatingly painful”, her mother has told a coroner.

Giving evidence at the inquest of 27-year-old Maeve Boothby O’Neill , her mother, Sarah Boothby, described her daughter’s efforts to stave off starvation and her desire to live but claimed medical staff did not have the knowledge or resources to help her.

Maeve’s father, Sean O’Neill, said it had been difficult to get their daughter the palliative care she needed as she became critically ill because there was still suspicion that her illness was invented.

He said his daughter was in “great distress and physical pain” at the end of her life. “There seemed to be an obstacle to palliative care based on the idea that in this huge bureaucracy that grew up around Maeve somebody seemed to think the illness was fabricated, not real,” he added.

The inquest in Exeter has heard how Maeve became severely ill with ME in 2021 and found it hard to move, eat or drink. She went into the Royal Devon and Exeter hospital (RDE) three times but asked to go home because she knew she was going to die.

Boothby became emotional as she said of her daughter: “If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved. She wanted more than anything a loving hug. By then it was too late for that; hypersensitivity made all touch excruciatingly painful. Maeve was starving to death.”

She also told the inquest that her daughter had wanted to live. “She did everything she could to survive.”

Maeve was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) in 2011. Ten years later it became very severe and in March 2021 she became unable to sit up, chew or hold a cup to her lips. She died in October 2021.

After a stay in hospital, she was sent home without the amount of protein supplement she needed because there was not enough in stock and there were delays of two weeks getting it in the community.

When she was admitted to hospital for the third and last time in the summer, she was in “a starvation state”, her mother said. She told the inquest: “The hospital didn’t act quickly enough. It hadn’t planned for admission as it needed to.”

A nasogastric feeding tube was tried but did not work. Boothby said: “She made the judgment she had reached her limit, knowing her death was inevitable.”

In her statement to the inquest, Boothby said her daughter’s death had been “wholly preventable”. In evidence she said: “This is about the system and how it didn’t work for Maeve.”

Boothby’s father was too emotional to read his two statements. The coroner, Deborah Archer, read them for him. He had written: “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. Medicine and medics did not know what to do.”

He added: “This orthodoxy led to Maeve being stigmatised in a way that so many patients are. The view is taken that they are malingerers or feigning illness or somehow parents are responsible. It is a view held by many powerful individuals in the NHS.”

His statement ended: “She was desperate to live and was full of dreams and hopes. But nor did she want to live a life in the shadows, confined to bed being fed through a tube. I feel her loss every hour of every day.”

The inquest continues.