LOS ANGELES, Calif. — In March 2020, Diana Berrent shared her coronavirus journey with the world, documenting her 18-day quarantine with daily videos.
"No one thinks that they're going to be the first one on their block to get the plague, but you know, life happens fast," said Berrent. "I realized I was going to be among the first survivors."
Able to recover at home, Berrent channeled her gratitude into finding ways to help others.
"I am going to be participant 001 at Columbia Presbyterian's effort to recruit survivors to donate their blood and plasma to gather the antibodies and hopefully save the lives of people who are dying," she shared with followers online, in March 2020.
Berrent says she got completely obsessed with the idea of convalescent plasma. During quarantine, she launched Survivor Corps, a grassroots movement mobilizing COVID-19 survivors to donate plasma and support research.
"As a survivor, I had built this internal hazmat suit that I could share with other people, and it was incredibly powerful," said Berrent.
While grateful to support science and help patients, Berrent would later describe this badge of honor as a ticking time bomb. Her COVID-19 symptoms lingered weeks after recovering, and new ones appeared.
"By the middle of April, we knew. Surviving COVID did not mean recovering from COVID," she said.
Her network for survivors became a refuge for long COVID sufferers, thousands of people living with debilitating symptoms after recovering from the virus.
"It's not brain fog; it's cognitive dysfunction," Berrent says. "The people who suffered the fatigue describe it like literally being hit by a bus and then rolled over by a train."
With help from a small team, her nonprofit has garnered nearly 180,000 members online.
"It took a small group of suburban moms who were Zoom schooling on the side to bring everyone together," said Berrent. "I like to think of ourselves as the Moms Demand Action of COVID."
Taking survivors' stories to the scientific community, they now have a seat at the table.
"We act as a subject matter expert to the White House Task Force, to the CDC, to the NIH. I sit on the NIH's RECOVER committee," said Berrent. "I sit on more steering committees than I can count."
Their advocacy has helped launch research studies at institutions like Yale.
But while Congress approved more than $1 billion to study long-hauler COVID, patient advocates are calling for more urgency to get it in the hands of researchers.
"There are scientists throughout the U.S. who are trying to do research," said Berrent. "And they're saying we can't do anything because we are waiting for the NIH to distribute funds."
Last month, the agency announced plans to build a national study population. More than 100 researchers will get funding for the large-scale effort.
"We're there to give them signals, to give them signs of what's going on. Of what people are suffering from. But they need to do the real science," said Berrent. "People are losing hope, and that's not an ok place to be at this stage."
After twenty months, their network of survivors seeking refuge continues to grow.
"We have a long way to go," said Berrent. "What keeps me going is we're making tremendous progress. People are listening to us. We are changing the discourse."