On Friday, August 9th (tomorrow), Deborah Archer, the coroner who presided over the inquest into the death of Maeve Boothby O’Neill, will issue her findings of fact. Following that, she has tentatively scheduled another day of testimony on September 27th. The testimony during the two-week inquest, held in Exeter, England, UK, revealed starkly that the National Health Service consultants at the Royal Devon and Exeter Hospital had little or no idea what was wrong with Maeve and how to address it. The hope is that Archer will issue a set of tough recommendations to help ensure that such situations no longer occur.
The press coverage was extensive and largely sympathetic. ME Research UK has compiled a helpful compendium of quotes from the nine days of testimony and links to coverage in The Times, The Guardian, BBC, and many other news outlets, with highlights from the first week presented here and the second week here. Some patients have also commented on the events in moving posts of their own.
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Whitney Dafoe: “I received TPN and lived, Maeve was denied TPN and starved to death.”
In a post today to mark Severe ME/CFS Awareness Day, Whitney Dafoe discusses how tube-feeding kept him alive while Boothby O’Neill was unable to successfully access this form of treatment. Dafoe is the son of renowned Stanford geneticist Ron Davis, who has devoted himself to finding answers to the illness; Dafoe’s story has been the subject of a book called The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son. In today’s post, Dafoe includes the text of the letter he sent to the coroner about the contrast between his and Maeve’s situations. Here is the first half:
“This Severe ME/CFS Awareness Day comes the day before the Coroner publishes her findings from the Inquest into the death of Maeve Boothby O’Neill in the UK. Which means doctors were giving evidence in the Inquest a week before the death of Sophia Mirza, the severe ME/CFS patient who died on this day in 2005 and is why we honor Severe ME/CFS patients on this day.
“Today I want to shed light on two stories of severe ME/CFS that speak to the profound fragility, vulnerability and helplessness that Severe ME/CFS patients face. And in doing so I wish to honor the life of Maeve Boothby O’Neill and her tragic, entirely preventable death on October 3, 2021.
“The first story is my own. I am a patient who is extremely severe, but has enough support from family and doctors to not only survive, but after the seeming 60th treatment I tried – Abilify – in this long battle for life, I am now also able to write and engage in creative expression. And yet even with this support, I still crash and get worse doing things like writing a letter to Maeve’s Coroner (shown below) from bed. I still suffer every day from a life so limited that all of my former dreams, goals, aspirations and loves are out of reach. And yet I find profound meaning and purpose in creative projects I can work on in bed, and even more so from helping spread awareness about Severe ME/CFS because I am one of very few people in the world who knows the most severe form of ME/CFS from personal experience and am also able to express that reality to the world. If I don’t act, there are few others who know this reality who can. Because most patients who are ever this severe are lost either to isolation, silence, and darkness, or death............................................................
