'The Science Isn’t Settled on Chronic Lyme' by Rehmeyer and Dusenberry

[Remy]

Fantastic Slate article by Julie Rehmeyer and Maya Dusenberry.

As journalists who have studied other contested diseases, the disdain and scientific drumbeating of the critics of chronic Lyme raised our suspicions. One of us (Julie Rehmeyer) has written extensively about bad research practices in myalgic encephalomyelitis/chronic fatigue syndrome, aka ME/CFS, and published a memoir about navigating a poorly understood illness, Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand. And one of us (Maya Dusenbery) has written a book about gender bias in medicine, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. We’ve dug into the science and politics of Lyme, and we’ve found that this dismissive position doesn’t have a scientific leg to stand on—and further, that the dynamics around the illness are significantly driven by sexism.

 

[Paw]

Thanks, that is a great write-up.

This review of Khakpour's book is a nice non-science companion piece focusing on the social dynamics of chronic invisible disease (not only Lyme), harking back to Virginia Woolf, Susan Sontag, etc.

It's an oddly comforting read because Khakpour, Rhemeyer, and others encourage us to find meaning in alternative narratives rather than getting bogged down in ruminations about whether or not we are believed, or how we might or might not fit into society's conventional narratives -- which have yet to figure out how to accommodate chronic sickness.

Woolf identified both the sick and their caretakers as outsiders by default. Invalids are "deserters" from the "army of the upright," and, she noted wryly, anyone who takes the time to engage with them must be likewise: "Sympathy nowadays is dispensed chiefly by the laggards and failures, women for the most part ... who, having dropped out of the race, have time to spend upon fantastic and unprofitable excursions."

I think there's still a lot of truth to this. I'd never fully contemplated the psychic sacrifice required of others merely for believing and aligning with sick "misfits" -- so I quickly phoned my sole unwavering ally to thank him for his years of unconditional support and belief in my struggles.