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.
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.
Kristin Krathwohl says
Maeve sounds like a kindred spirit. I would’ve loved her Dartmoor mysteries and will be visiting Shelf Absorption.
This is such a horrible disease. I get so angry when I see people sick in the teens or young adulthood.
My heartfelt condolences to Ms. Boothbay and Mr. O’Neill.
Peter Trewhitt says
If someone imposed the consequences of severe ME onto another person it would rightly be regarded as extreme torture.
With very severe ME any activity including standing up, being in a sunlit room, have someone else enter your room to briefly talk to you, listening to music, eating a meal can significantly worsen the symptoms. Yet regularly doctors somehow think that the condition does not matter, that somehow the patient is inflicting this on themselves. Even mild ME disrupts the activities that give us our sense of identity our self worth and give us pleasure, but very severe ME takes them away from us entirely.
I understand that there are aspects of ME that doctors find difficult: it’s variability within and between individuals, that it does not fit neatly into current medical specialisms, that exercise or indeed any exertion can make us worse rather than help, that despite a number of demonstrated biomedical anomalies we do not yet understand the aetiology of the condition, the lack of an accepted clinical diagnostic test, etc. However, none of this justifies dismissing or ignoring the patient.
At a very trivial level the person with ME chooses not to do activities, but that choice is forced on us by the consequences of undertaking activity beyond our current threshold for triggering deterioration. No one without a very very obvious and extreme psychiatric disturbance would choose to enter the torture chamber that is severe or very severe ME and remain there for years or even decades.
We repeatedly hear about our ‘NHS heroes’ but, from what I’ve seen, so many of them seem to consider it good practice to neglect patients who they’ve decided are the undeserving ill. It appears that they’d rather adopt the false illness beliefs and mantras of their colleagues and medical hierarchy than heed the pain, suffering and distress of their patients. If the last few years have taught them anything it should be to challenge and not automatically believe what they’re being told. They want the public’s support now, but why on earth should we give it to them when we see them treating patients with unexplained symptoms and conditions with such contempt?
Anne Kennedy says
Maeve was so brave.
Life-Threatening Malnutrition in Very Severe ME
Some of the most severely affected ME patients experience serious difficulties in maintaining adequate nutrition and hydration and will require feeding enterally. With the awareness of the difficulties people with very severe ME can have obtaining nutrition and hydration and the clinical response, the 25% ME Group devised a questionnaire for members who had experience of being enterally or parenterally fed. An invitation to participate was placed in the 25% ME Group charity’s newsletter, ‘The Quarterly’, in summer 2019, This was available either on paper, by post or via email. The questionnaire contained a range of questions such as age, reason for AN, type of AN, duration and an open-ended section for noting ‘any other relevant information.’ https://www.mdpi.com/2227-9032/9/4/459
It’s safer not to have ME/CFS on your medical file and to have Co morbid conditions, such as gastroparesis, listed separately. That way, you’re more likely to get proper medical treatment and intervention
Getting an ME/CFS diagnosis is hard in the UK and once you have it you become a headcase to be abused by the entire NHS. This will be another inquest finding negligence (or be just another one of the NHS’ coverups to join all the others) but nothing is going to change. The abuse is a universal experience every ME/CFS and now long hauler is experiencing. Stigma from doctors is so normal almost none of us get any medical care at all for anything in the UK. The NICE 2021 change has unfortunately changed nothing at all.
drift boss says
In the UK, getting a ME/CFS diagnosis is difficult, and once you get it, you become a headcase who is abused by the entire NHS. This will be another inquest that finds negligence (or is just another of the NHS’s coverups to add to the list), but nothing will change. Abuse is a universal experience shared by all ME/CFS patients and now long haul truck drivers. Doctors’ stigma is so common that nearly no one in the UK receives any medical care at all. Unfortunately, the NICE 2021 amendment has had little effect.