September 20, 2020

Covid-19 “long haulers” are organizing online to study themselves

Gina Assaf was running in Washington, DC, on March 19 when she suddenly couldn’t take...

Gina Assaf was running in Washington, DC, on March 19 when she suddenly couldn’t take another step. “I was so out of breath I had to stop,” she says. Five days earlier, she’d hung out with a friend; within days, that friend and their partner had started showing three classic signs of covid-19: fever, cough, and shortness of breath.

Assaf had those symptoms too, and then some. By the second week, which she describes as “the scariest and hardest on my body,” her chest was burning and she was dizzy. Her friend recovered, but Assaf was still “utterly exhausted.” A full month after falling ill, she attempted to go to grocery shopping and ended up in bed for days. 

She didn’t initially have access to a coronavirus test, and doctors who saw her virtually suggested she was experiencing anxiety, psychosomatic illness, or maybe allergies. “I felt very alone and confused, and doctors had no answers or help for me,” says Assaf, whose symptoms persist to this day. 

In those first few months, Assaf found a legion of people in situations similar to her own in a Slack support group for covid-19 patients, including hundreds who self-identified as “long-haulers,” the term most commonly used to describe those who remain sick long after being infected. 

There, she noticed, long-haulers were trying to figure themselves out: Did they have similar blood types? Get tested at a certain time? Have a common geographic or demographic denominator?

So Assaf, a technology design consultant, launched a channel called #research-group. A team of 23 people, led by six scientists and survey designers, began aggregating questions in a Google form. In April, they shared it within the Slack group and on other social-media groups for long-haulers like them.

In May, this group, which now calls itself Patient-Led Research for Covid-19, released its first report. Based on 640 responses, it provides perhaps the most in-depth look at long-haulers to date and offers a window into what life is like for certain coronavirus patients who are taking longer—much longer—to recover.

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