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

Maeve Boothby O’Neill on her 18th birthday. Her father said she was ‘stigmatised’ due to beliefs that ME is ‘a behavioural problem or a psychological illness’. Photograph: Family handout/PA

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.