By David Tuller, DrPH
Two years ago, Beth Mazur, who co-founded #MEAction and spent years advocating for better care and more research, committed suicide during a stay with her close friend and fellow person with ME, Julie Rehmeyer. It is hard to imagine what feels unimaginable—the shock and pain of finding the body of someone you love in their room in your home under such circumstance.
(I posted Beth’s obituary here. I knew her only slightly. When I first started crowdfunding, she had helped me enormously by promoting my appeal to MEAction’s audience, and once stayed at my San Francisco flat for a couple of days.)
I’ve known Julie for more than ten years, although we’ve never met in person. Back in 2017, she and I co-wrote an opinion piece about ME/CFS, with a focus on the PACE trial, for The New York Times. She has published a memoir, Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, and has recently launched a Substack newsletter focused not just on chronic illness but on—wait for it!—the energy transition in New Mexico.
However, the first post, called “Holding What Holds No Meaning,” is focused on Beth’s death, and it is a heartbreaker. Here’s the opening:
“Almost two years ago, on the winter solstice, I was given the most terrible honor of my life: My dear friend Beth Mazur chose to end her life while visiting me. I didn’t agree to this, but it happened.
“Beth was a towering figure in the community surrounding myalgic encephalomyelitis (also known as ME or ME/CFS). If you’re in the ME or long Covid communities, she’s profoundly impacted your life, even if you didn’t know her.
“She spent the last two weeks of her life with me, and it was marked by ordinary joys that felt extraordinary after so much struggle for both of us. We soaked in a hot tub at a Japanese spa; went to the Santa Fe Plaza to see the Christmas lights; cuddled with my animals; spent hours with her head in my lap as I rubbed her shoulders and we talked quietly. She was in the middle of so many projects, every day on the phone with patients, advocates, and researchers. Even as she carried enormous suffering, she carried others too.”
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I am always amazed to read Whitney Dafoe’s blog posts. I mean, I’m amazed just by the fact of them, that he is able to write such cogent and thoughtful pieces after all he’s been through in his many years of severe illness. Each time I see a new post, I hope he hasn’t crashed too badly from the cognitive effort involved.
Whitney’s dad, well-known Stanford geneticist Ronald Davis, has become a leading ME/CFS researcher, and his mom, psychologist Janet Dafoe, is an ardent patient advocate. The family’s story was the subject of a 2021 book, The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son, by Tracy White (with Ronald Davis).
Whitney recently posted a blog called “Remembering What Real Life Is Like,” about his experience of having to go to the hospital to get his Jtube replaced—a semi-regular occurrence. In the piece, he writes about what he observes during these trips, and how it makes him even more acutely aware of his own limitations.
I assume these reflections will resonate strongly with those in similar situations. And his words will also help others understand and empathize with how things look from the perspective of those who have to anticipate payback from each action or activity.
Here’s an excerpt:
“I’ll not only be outside, but I’ll also see healthy people wasting energy, bubbling and bouncing around in a way that looks to me like a hoard of rabid ants, chattering away, literally just throwing energy away like it is worthless. Because to them, it is worthless – it has no value because they have rather limitless energy and even in the weakest, sickest moments of their entire lives, they have never experienced the energy limitations ME/CFS imposes on a person.
“And I will be exposed to that healthy world where everyone feels fine and has plans for the future and goals and a full life. Where they live a full day and go to sleep knowing tomorrow will be another full day of work and play and love and fresh air and sun and endless surprise unknowns of all sorts.”
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I’d never heard of The Salt Path, an apparently inspirational 2018 memoir about disease and recovery by a British couple that was turned into an apparently similarly inspirational movie. The couple attributed the husband’s improved condition to an extended hike—i.e. exercise. (A recent expose, published in The Observer, suggested that the couple’s story is, more or less, a pack of lies.)
Whatever. The scandal over the issue prompted an interesting blog from Elke Hausmann, a GP with Long COVID who is currently not due to Long COVID. The post appeared in BJGP Life, a site for opinion and commentary associated with the British Journal of General Practice. Her blog is titled “What does the fallout from the ‘Salt Path’ saga tell us about our society’s ideas about chronic illness and exercise?” Here’s a key passage about the impact, in Housmann’s view, of the exercise-is-always-good mentality:
“Our societal bias that exercise can only ever heal, never harm, is incredibly pervasive. It is playing out right now in how we understand and discuss Long Covid, and as we have done in relation to ME for decades. I think one of the main reasons for why we are no further in finding a cure for those conditions is that so many don’t believe that exercise can ever harm…
“This is a narrative that the political establishment, presiding over unprecedented levels of chronic illness, disability, economic inactivity and benefit bills, will welcome: the suggestion that ill people can get better, if only they tried hard enough. It places the onus onto the sick individual to get better, and away from the expectation that in a civilised society, the collective should support ill people (who often don’t get better, no matter how hard they try).”