A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS
31st May 2023Katie Johnstone
I spoke with Sarah Boothby over zoom on 19 May, 2023. Our discussion was wide-ranging, and I’ve cut down and rearranged what was said for length and clarity. Maeve’s story is profoundly upsetting, and discretion is advised.
Maeve Boothby-O’Neil. I requested a photo and received this with the note: “She did not want to be remembered for being ill. She was a writer with a talent for languages.” Photo: Sarah Boothby.
How old was Maeve when she first got ill with ME? How did it affect her life?
Maeve was 12 when we both had the same virus in the spring of 2006. I recovered fully. Maeve slowly developed ME.
She was an A* student. A natural scholar who loved to learn and did not miss school, but she was given a reduced timetable and they asked her to sit out of PE lessons because she would collapse. By the time the diagnosis was confirmed she had left school with three A Levels and five AS Levels.
She could not progress to university but continued to teach herself -Hebrew, Irish, Italian, economics, philosophy, creative writing and everything she could learn about the biomechanisms of ME until the illness became very severe in 2020.
People with ME often face a long and difficult journey to get a diagnosis. Was that the case for Maeve?
Yes. Once she got ill she began seeing a paediatrician, who told her there was nothing wrong with her. That went on for two years. Then we moved two counties to get a diagnosis from an NHS centre of excellence in Bristol, and had to wait nine months for confirmation of the diagnosis.
You moved house in order to receive better medical care for Maeve?
Yes, there was nothing for her where we were. As she became more severe she saw countless healthcare professionals in hospital and in the community after needing more help to live than her mum alone could provide.............................................