Inquest begins into the death of 27-year-old who fought ME for years

“I have been unable to sit up or chew since March. The only person helping me eat is my mum. I cannot get enough calories from a syringe. Please help me get enough food to live.”

A letter from Maeve Boothby O’Neill to her GP is read out on the first day of her inquest. It was sent just under four months before her death.

Maeve Boothby O’Neill was just 27 when she died in 2021. An inquest into Maeve’s death has begun at Exeter Crown Court, and is scheduled to last for two weeks. It will determine if ME, or Myalgic Encephalomyelitis, is recorded as her cause of death on her death certificate and her parents, Sean O’Neill and Sarah Boothby, hope it will answer questions they’ve wanted answered for years.

Her dad Sean wants a greater recognition in the medical profession that ME is a serious physical illness. Her mum Sarah wants the “full facts” to be found. She says if people don’t take ME seriously, it can kill.

At the start of the first day, the inquest heard that the GP who referred Maeve’s death to the coroner in the first place would not be appearing as a witness. The inquest was told that she was too unwell to attend and was currently suffering from PTSD due to the toll Maeve’s death had had on her. Sean told the inquest that Maeve’s GP had never seen anyone so poorly treated as Maeve was.

In a pre-inquest hearing, the medical director of the Royal Devon and Exeter NHS Foundation Trust acknowledged that there was a lack of local and national services for people like Maeve, with severe ME.

Maeve would have been 30 this year. Her parents talk about how she was a keen writer and that she would have been a “great asset to the world” with a career that “contributed to society”.

Maeve’s inquest is expected to last for two weeks and conclude on August 2.

Additional reporting by Joe Lajszczuk.