<
https://www.newyorker.com/news/annals-of-inquiry/what-would-it-mean-for-scientists-to-listen-to-patients>
"Soon after she got sick, Amy Siniscalchi felt as though her limbs were
burning. “Then it morphed into, like, electrical buzzing,” she remembers. “At
times, it would feel like my blood was gurgling, like seltzer in my veins.”
Siniscalchi’s story follows a now familiar arc. In March, 2020, as a healthy
forty-four-year-old, she was exposed to COVID, became ill, and never fully got
better. Months later, she was still suffering from an array of strange
symptoms: debilitating fatigue, memory problems, trouble walking, the seltzer
sensation. She sought help from her primary-care doctor but left the encounter
feeling dismissed.
“It wasn’t, like, ‘I’m so sorry for your suffering, I believe you, we just
don’t know anything yet,’ ” Siniscalchi recalled. “There were a couple of
doctors in the beginning that really just acted like nothing was wrong.” In
search of answers, Siniscalchi went online. There, in Facebook groups and Slack
channels, she found something more affirming than simple fellowship: thousands
of others like her were organizing to make their suffering visible while sick
and isolated at home.
Siniscalchi and I met over Zoom in May. Her face was framed with bright-red
ringlets, and she had an air of eager, determined intensity. Prior to getting
sick, she was a nonprofit administrator who worked fifty-to-sixty-hour weeks
and exercised almost every day of the week. Since becoming ill, she has had to
quit her job and, on many days, hasn’t had the energy to leave the house. In
place of what she’s given up, her illness has become a kind of vocation. She
spends much of her time online, connecting with others suffering from Long
COVID and looking for information that might help. “When I lay down and I’m
supposed to be resting, I’m scrolling studies,” she said. “And I don’t
understand half of it, because I don’t have a science background, but I try to
get it in context.”
Siniscalchi told me that she was hesitant to describe herself as a “citizen
scientist,” but people like her—sick people who became lay experts in their own
illnesses—were the first to name and characterize Long COVID. In April, 2020, a
grassroots group, later called the Patient-Led Research Collaborative
(P.L.R.C.), started surveying several hundred who remained sick for weeks after
presumed COVID infections. Their results, published in a Google Doc, became the
first systematic study of patients with Long COVID. Other groups also began to
collect and disseminate data; in online forums, people with unresolved illness
referred to themselves as “long haulers.” The academics Felicity Callard and
Elisa Perego would later make the provocative argument that “Long COVID has a
strong claim to be considered the first illness to be collectively made by
patients finding one another through Twitter and other social media.”"
Via Violet Blue’s
Pandemic Roundup: January 25, 2024
https://www.patreon.com/posts/pandemic-roundup-97166797
Cheers,
*** Xanni ***
--
mailto:xanni@xanadu.net Andrew Pam
http://xanadu.com.au/ Chief Scientist, Xanadu
https://glasswings.com.au/ Partner, Glass Wings
https://sericyb.com.au/ Manager, Serious Cybernetics
