By Rachel Reiff Ellis
In March 2020, during the first U.S. wave of COVID-19, Hannah Davis, a data analyst and generative artist with a focus on tools for countering bias in machine learning datasets was waiting out symptoms. She fully expected her sudden cognitive dysfunction and physical stamina to improve in about 2 weeks, but at week 3, symptoms persisted — and then got worse.
Bouts of a rapid heart rate made getting to her third-floor walk-up apartment nearly impossible. She would sit, then slide up one step at a time, resting between each. Light and noise were unbearable, and severe headaches that started suddenly made things worse. She took to wearing noise-canceling headphones and sunglasses. (Davis sometimes also wears in-ear devices to block out sound.) Her executive functioning skills, along with her once-sharp memory, were gone. Not only was it physically hard, it was a crisis of identity.
"It impacted how much I can remember about people I love and care about, and ultimately the way I create relationships," Davis says. "I had always been able to vividly recall visual memories from very early in my life. I could have a 3-hour conversation with someone and remember the entire thing. I lost all of that."
These were the first weeks of her life with long COVID.
The CDC broadly defines long COVID as new symptoms and conditions that develop after acute COVID-19 infection. Long COVID symptoms can last for months or years.
While navigating her new reality, Davis connected with a support group called Body Politic, founded by Fiona Lowenstein, a long COVID patient who created the group for those with prolonged recoveries. Through the "data nerds" channel of the group, Davis met fellow members and long COVID patients Gina Assaf, Lisa McCorkell, Hannah Wei, and Athena Akrami, who, like Davis, not only had firsthand experience, but also professional skills valuable for gathering, organizing, and interpreting data and policy.
Together, Davis and the interdisciplinary team turned their common misfortune into a mission. Driven by a desire to help others with long COVID through advocacy, research, and speaking out, they self-organized as the Patient-Led Research Collaborative (PLRC) and put their skills as researchers formally to work.
"It's hard to communicate the urgency and desperation we were feeling," Davis says. "We were convinced this couldn't keep happening to anybody else."
In April 2020, the PLRC created a survey for long COVID patients, analyzed the results, and within 9 days produced the first published study of long COVID. With their findings in hand, they began meeting with public health leadership at the CDC, National Institutes of Health, and World Health Organization to forge a path toward more research on long COVID.
According to the CDC, 5.5% of U.S. adults — around 1 in every 18 — have long COVID. "It's about the same prevalence of people in the U.S. who have diabetes," Davis says. "The fact that [this many people] have a new, severely limiting illness is staggering. It should be the top news story every day."
Today, the PLRC has grown to 50 staff and volunteer members with expertise in biomedical and participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, and health activism.
"Patient-led research and advocacy is crucial in order to increase both the speed and quality of biomedical research, because patients and patient communities have lived experience and community knowledge that can deepen the questions and hypotheses of the illnesses they're living with," Davis says.
The collaborative works with others, such as the Council of Medical Specialty Societies, National COVID Cohort Collaborative (N3C), and Eric Topol, MD, editor-in-chief of Medscape, executive vice president of Scripps Research, and founder and director of the Scripps Research Translational Institute. And they advocate for the long COVID community, working to translate awareness of the issue into real-world clinical trials and care.
"Hannah is my go-to expert who not only keeps up with all new, relevant long COVID research, but also helps provide critical guidance for what needs to be done," Topol says. "She's the exemplar of citizen science, and with her colleagues at Patient-Led, has had remarkable impact for raising awareness of long COVID and other conditions that require far more attention and effective treatments."
Through the PLRC's efforts, the needle is starting to move. Their initial goal was to act as a catalyst for research and action, and they have directly influenced professional scientists to switch fields to long COVID. In 2021, their research was mentioned in the announcement of $1.15 billion in funding for long COVID research from the National Institutes of Health. More recently, the collaborative distributed $5 million in grants to researchers for biomedical projects and started a journal of patient-generated hypotheses.
"In an ideal world, long COVID and [associated conditions such as] myalgic encephalomyelitis and dysautonomia get a biomarker, get a huge number of clinical trials underway, and eventually a successful treatment," Davis says. "Then we can sunset PLRC and go back to the things that we were doing beforehand. And the field of patient-led research will have been advanced, showing more possibilities and higher standards than before."
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