By David Tuller, DrPH
Olympic Sprinter Bedbound for 22 Hours a Day
The BBC has profiled Beth Dobbin, a top-level sprinter who is, per the story’s headline, “now bedbound for 22 hours a day” with a severe case of myalgic encephalomyelitis (ME). In 2021, Dobbin, 32, represented Great Britain at the summer Olympics in Tokyo.
That was then. The following winter, she suffered from bouts of glandular fever and COVID-19. In the subsequent months, she experienced a gradual weakening even as she kept competing as a sprinter. Within a year, that became impossible.
She eventually received an ME diagnosis. She lives in Doncaster, about 150 miles north of London, under the care of her family. To those who don’t know about severe ME, the details of her current life would sound shocking. From the BBC article:
“This year, Dobbin has left the house on just five occasions.
“’It’s life-decimating like I can’t even put into words,’ she says. ‘I feel like I’ve lost everything…I have still got my family, but I’ve lost my independence, my health, the ability to work, the ability to exercise.’”
Here’s another brief excerpt:
“The condition [ME] is also known as chronic fatigue syndrome (CFS), a label Dobbin strongly rejects. As a former athlete who balanced working eight-hour shifts with training before turning professional, she says she has ‘known fatigue my whole life’ and believes the term fails to capture the severity of the illness.
“’I wish it was just fatigue, that would be a walk in the park,’ she says. ‘It’s so much more than that. If I thought of fatigue in my top 20 symptoms it might just make the cut.’
“Instead, she says, it feels like her entire body ‘is shutting down; it feels like you are a few days from death.’”
Dobbin assumed doing the interview would cause her to crash. But, as she told the BBC, she felt an obligation to speak up:
“’A lot of people that have this illness that I’ve spoken to have said to me “I don’t get believed, people think I’m lazy.” I’ve never experienced one person that doesn’t believe me and that’s because, why would an athlete just suddenly stop after 20 years?…I’ve got a slight platform. If this happened to most people they wouldn’t be able to speak about it, so I do feel like I’ve got a bit of a duty to do that.’”
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Van der Zee’s Views on Suicide
And here’s another compelling blog post from my friend Anil van der Zee, this one about the challenging issue of suicide. The title: “Staying Alive Is My Protest.”
Anil, a former ballet dancer, was awarded a knighthood in August in recognition of his years of ME-related advocacy. (I interviewed him about that here.) As he explains in the new post, he lost a partner to suicide and has his own history of suicidal ideation as a young gay man struggling to find his place in the world.
Here’s why he wrote the piece:
“With the sadly increasing number of people with ME passing away, not uncommonly dying due to suicide or euthanasia, sometimes weekly, I often get asked why I keep holding on with severe ME, or if I ever get depressed or have ever considered euthanasia. The answers to this are complex, and it’s of course a sensitive subject, but for the moment euthanasia is not something I am considering, and I will try to explain why.”
Among his concluding thoughts:
“The fact that young people are even having to consider euthanasia due to the abysmal situation created by the scientific failures, the political neglect, the medical gaslighting, the absence of care, the lack of safety is unacceptable to me. It’s also often the case that outsiders only express their outrage about someone with ME “choosing” to die instead of the life or the lack thereof they were forced to live. Outrage over the latter could help prevent someone even considering dying in the first place.
“It’s also important to note that suicidal ideation isn’t linked to depression per se. We also see it in non depressed patients who feel stuck in this situation that was created by the system itself: the years of preventable suffering that go far beyond the disease alone.
“That suffering is unnecessary. It can be avoided if those who should, would actually give a damn. The fact that people die due to suicide or euthanasia is therefore one of the greatest forms of injustice. The fight against the injustice done to the patient community is a big driver.
“I just can’t and won’t shut up about it!!!”
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Who Knows More, Patients or Doctors?
The journal Studies in History and Philosophy of Science has published a paper called “Patient’s knowledge, doctor’s ignorance: The production of knowledge about myalgic encephalomyelitis.” This deconstruction of the dynamics between the providers and consumers of medical care argues convincingly that, in the case of ME, the standard roles have been essentially reversed.
The author, Chloé de Canson, was an assistant professor in the department of theoretical philosophy at the University of Groningen from 2020 to 2022. After having COVID-19, she developed Long COVID in the form of a severe case of ME. Although bedbound, she continues to research and write, and remains an “external staff member” at the university. She is also a member of the Patient-Led Research Collaborative, which conducts research and engages in advocacy about Long COVID.
In her online bio, she writes this about her research interests: “Recently, I have begun to write on illness, medicine, and the social epistemology of science, as a result of my own illness. I am particularly interested in the potential of lay science to correct some of the errors made by institutional science, thereby enabling scientific progress.”
Her new article squarely addresses those issues. Like much academic work, the writing can be, well, a bit academic-y. But as these things go, it’s a relatively easy read that makes some important and enlightening points, such as this:
“Background ideological beliefs about poorly understood diseases which predominantly affect women have made flawed psychologising theories seem convincing, which in turn have made the need for extensive biomedical research and medical education on the disease seem much less pressing than for other diseases. Pervasive ignorance about the disease among medical professionals has ensued.”
And this:
“In the dominant imaginary, patients are ignorant about the medical aspects of disease: besides introspection, from which they know only their own experience (their phenomenology: the what-it’s-like of their illness), whatever beliefs they have about their illness independently of their doctors are the product of highly unreliable belief-formation mechanisms, dismissed as “old wives’ tales,” celebrity fads, and social media misinformation…But the reality is that people with ME, unable to rely on medical institutions, have had little choice but to dive into the biomedical aspects of their illness themselves.”
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