As my daughter died of ME, the state met in secret to blame me

In the final weeks of Maeve Boothby O’Neill’s life, her mother tried frantically to get her the palliative care that might make her death more comfortable. Maeve was in pain, too weak to chew, and dying of malnutrition from severe myalgic encephalomyelitis (ME).

Sarah Boothby had no idea that at the same time as she begged for help for her daughter, the people she was turning to were holding secret safeguarding meetings, discussing the possibility that Maeve’s condition was in fact caused or fabricated by her — and proposing Maeve’s forcible removal from her care.

Maeve was 27 when she died in October 2021 in the Exeter flat she shared with Boothby. She had discharged herself from hospital because, with no cure or viable treatment, she wanted to die at home.

Boothby and Maeve’s father, the Times journalist Sean O’Neill, knew from bitter experience that there was scant medical support available for ME. But they could not understand why it was so hard to get their daughter the help she needed for a more bearable death.

It was only when council documents were disclosed before Maeve’s inquest last year that they finally got answers.

Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby. That year there were seven safeguarding meetings that neither Maeve, nor her parents, were invited to.

Boothby contacted The Sunday Times after an investigation last month found that hundreds of parents, mostly mothers, are being falsely accused of fabricating or inducing their child’s illness, and facing allegations of abuse when they seek medical care for them.

The ME Association says parents of children with ME or long Covid are “a sitting duck” for allegations of “fabricated or induced illness” (FII, of which FDIA is the most extreme example) because the condition is so poorly understood and it is challenging to get a diagnosis.

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Source: The Times, 10 August 2025