By David Tuller, DrPH
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For two weeks in late July and early August, His Majesty’s Assistant Coroner Deborah Archer heard testimony regarding the death of Maeve Boothby O’Neill, a 27-year-old woman who died of malnutrition after three hospitalizations at the Royal Deven and Exeter Hospital (RDE) failed to address her severe case of ME. While Archer’s report on the circumstances of Maeve’s death found no liability on the part of medical personnel and social service workers, it did highlight areas of concern.
On September 27th, Archer held another hearing to obtain testimony from Dr Anthony Hemsley, the RD&E’s medical director, about strategies to prevent such deaths in the future. The event was covered in the UK media, with The Times taking significant interest in the developments; this is not surprising, since Boothby O’Neill’s father, Sean O’Neill, is a Times correspondent. (For American readers, this is NOT The New York Times but Rupert Murdoch’s London news organization.) Now Archer has issued a Report to Prevent Future Deaths under Regulation 28 of the relevant legal guidelines.
I will likely post more on these events and the coverage of them soon, but for now here is the coroner’s Regulation 28 report in full.
I’m wondering if number 4 in the coroner’s report has been redacted or if it is just a typo?
I imagine that key clinical decisions by so many well-meaning doctors will almost certainly have been influenced by the decades-long view that ME/CFS is a functional somatic syndrome. Until something is done to address that view and to call those who have promoted and promulgated it to account for their actions and behaviour, I fear that similar tragedies to this one will not be prevented even if a service for severe ME/CFS patients is put in place. I suspect that harmful beliefs of doctors and healthcare workers and the prejudices they hold may prove very difficult to shift unless medical teaching about all severities of ME/CFS is completely overhauled.
https://www.theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome
In The Guardian, George Monbiot advances the somewhat surprising theory that the Revolutionary Communist Party is to blame for UK policy on ME/CFS.
A) Now, the Revolutionary Communist Party being wrong about something is not surprising. We could start with their name, and that whole “communism” thing.
B) They also have a surprising level of influence over UK media.
But overall, I think it’s more likely that the UK government went for Cognitive Behavioral Therapy in a big way in the hope it was going to be cheaper, and the problem was that It didn’t work for Non-epileptic seizures or ME/CFS. (Rather than the alternative theory that the government do whatever the press tells them to do, and the journalists say whatever their communist/ex-communist friends tell them.)