M.E. Awareness and Reform
The Times
Then in October 2021 Maeve Boothby O’Neill, the daughter of senior writer Sean O’Neill, died aged 27. She had suffered with ME since her teens and it became acute in her final years, with three failed hospital admissions between March and October 2021.
As the inquest into Maeve’s death approached in July 2024, The Times supported O’Neill’s determination to use the coronial process to highlight the neglect of an estimated 750,000 ME sufferers. The aim was to shift the political, health and scientific agenda.
We published reports on pre-inquest hearings, calls for action from former health secretary Sajid Javid and then the daily proceedings of a two-week evidence hearing. The coverage included Comment articles and two leaders urging the government to act to reform ME care and research. There were powerful first person pieces by O’Neill about Maeve including a podcast episode and a magazine feature with extracts from a journal he kept during the inquest process. Chief reporter Fiona Hamilton produced a harrowing Saturday feature from the inquest hearings while Eleanor Hayward, health editor, reported on other ME cases showing evidence of systemic neglect.
The campaign had an immediate impact and is tangible evidence of the relevance and power of public interest journalism.
Deborah Archer, the coroner, acknowledged the “very influential” role of The Times as she produced a Report to Prevent Future Deaths calling for action to rectify a situation where care for Severe ME was “non-existent” in the NHS; to improve research, and to step up education for healthcare professionals. It is the first time such a report has been produced in an inquest into an ME death.
Andrew Gwynne, the public health minister, committed to publication of a delivery plan on ME. After following coverage of the inquest he said: “This is a heart-wrenching example of a patient falling through the cracks. Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
The Royal Devon & Exeter hospital, where Maeve was treated, has changed its policies - especially artificial feeding protocols - for people with Severe ME and its medical director has lobbied the NHS nationally for reform.
Individual patients and their families have sent The Times messages of gratitude and support for recognising and highlighting the plight of people with ME. One wrote on X: “The coverage about Maeve is definitely having an impact. I saw a new GP today, the first doctor I've seen in years. He had read about Maeve and asked me how I felt I had been treated and if I thought I was believed.”
The campaign is not over. The Times will scrutinise the responses to the coroner’s findings from the government, the NHS and other medical bodies.