By David Tuller, DrPH
Last week, Codastory.com published an article I wrote about Maeve Boothby O’Neill, a 27-year-old in Exeter, England, who died in October, 2021, from complications of ME. The specific cause appears to have been malnutrition. Despite being alerted to the seriousness of Maeve’s condition, the local hospital resisted appeals to insert a feeding tube during her final months.
(My last story for Coda was about doctors with long Covid; before that, I wrote a piece about the Lightning Process as a treatment for ME/CFS.)
The coroner in Exeter is preparing to hold an inquest into Maeve’s death, most likely later this year. Hopefully, the inquest will get to the bottom of the matter, including the role of the actions—and the inactions—of the hospital and its personnel.
I first learned about Maeve through her dad, Times correspondent Sean O’Neill, who wrote an article last May about her death; he had brought widespread attention to ME in a series of articles the year before. As it turned out, I had previously met her mum, Sarah Boothby, at a conference several years earlier in Bristol. At the time she had mentioned that she was caring for her daughter, but I didn’t made the connection that she was Maeve’s mother until we met again last summer–first on zoom and then at her flat in Exeter.
While working on the piece, I was very aware that both parents would not only be reading what I wrote but would have to live with it as a public representation of their daughter and her experience. It can be especially challenging to write about people who are no longer here and cannot speak for themselves. Often they end up becoming more the objects of scrutiny and comment by others rather than subjects of their own stories.
In this case, my task was made easier because I had access to Maeve’s own writings–from e-mail exchanges, journals, applications for benefits, etc. She was funny and feisty and a really good writer! I wanted to include more but had to make hard choices. Unfortunately, that meant not highlighting Shelf Absorption, a quirky and entertaining site devoted to “everything you ever wanted to know about other people’s bookcases.” Maeve and a friend created it during the early days of the pandemic. I highly recommend checking it out.
Below, I’ve included the top part of the Coda story. For the rest, go to the link here.
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WHEN THE DOCTOR DOESN’T LISTEN:
The medical establishment has a long history of ignoring patients with ‘unexplained’ symptoms. Long Covid might finally bring about a global attitude shift.
In 2017, the London Review of Books published a commentary from an anonymous young woman with a prolonged illness that had seriously impaired her ability to care for herself. The situation was “infuriating,” she wrote in the short but impassioned article.
“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.
That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.
Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS.
An inquest into the circumstances, including the actions (and inactions) of clinicians and administrators at the local arm of the National Health Service, or NHS, is expected to be held later this year. Maeve was diagnosed with the illness in 2012, after several years of poor health. She fought hard to access appropriate medical care and social service support from institutions and bureaucracies that did not seem to understand the disease.
“She did everything she could to survive,” wrote Sarah Boothby, Maeve’s mother, in a statement she prepared for the upcoming inquest. The NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care,” wrote Boothby, adding that her death was “premature and wholly preventable.”
Maeve’s father and Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, brought widespread attention to ME in a series of articles, including one last year about Maeve. His “creative, courageous” daughter, wrote O’Neill, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”
You can read the rest here.