Jessai Flores, Contributing Illustrator

The key to better understanding long COVID — a condition that afflicts 10 percent of COVID-19 survivors — may lie in unexpected sources: Twitter and Facebook, which allows scientists to interact with patients in real-time.

Akiko Iwasaki, professor of immunobiology and molecular, cellular and developmental biology at the Yale School of Medicine, is an avid Twitter user. With 140,000 followers, her tweets cover topics such as COVID-19 vaccines, immune responses and discrimination in the sciences. Her active use of Twitter led her to Survivor Corps, a Twitter support group for patients suffering from long COVID. Iwasaki began to closely follow the group and came upon a poll on the Survivor Corps Facebook group, which showed that 40 percent of respondents had experienced an improvement in their long COVID symptoms — which range from insomnia and fatigue to memory loss — after their first dose of the vaccine. The poll prompted Iwasaki to look further into the effects of the vaccine on long COVID patients. She worked alongside Harlan Krumholz, professor of medicine, epidemiology and public health at the Yale School of Medicine. 

“The general design [of the study] is to track changes from before vaccination through the weeks afterward and see if different responses associated with distinctive immune system signatures and evidence of residual virus that might lead to diagnostics and therapeutics,” Krumholz wrote to the News. 

In the ongoing study led by Krumholz’s lab, researchers collect blood and saliva samples from long COVID patients before vaccination. The team then follows up with the patients six and twelve weeks after vaccination to monitor symptoms and recollect samples. 

Iwasaki and Krumholz are investigating two different hypotheses. One is that long COVID is caused by persistent viral infection or remnants of viral protein or RNA. Vaccines may induce strong T-cell and antibody responses, removing persistent viral components associated with the spike protein of the virus. The other is that long COVID is caused by an autoimmune disease. In that case, vaccines could induce interferons, which have immune-modulatory functions and can dampen the pathological impact of autoreactive cells. 

After conducting their small pilot study at Yale, Iwasaki and Krumholz are hoping to expand its scope to better understand the vaccine’s effects on long COVID patients. 

“We are hoping to expand the study nationwide,” said Daisy Massey ’19, postgraduate associate in the Krumholz lab and study coordinator for the project. “We are looking to launch it in the next 2-3 weeks and are hoping to get 100 participants.”

The vaccine’s effects on patients with long COVID may provide the keys to understanding the treatment and origins of the condition. However, the study’s origins on Twitter have sparked a conversation about social media’s role in science. 

“Twitter has been essential in our ability to learn quickly about long COVID, especially from the patients’ perspective,” Iwasaki said. “We collaborated with Patient-Led and Survivor Corps to think through and design the symptom surveys. I also learned about the impact of vaccination on long COVID through tweets from patients.”

Iwasaki values Twitter’s role in science because it allows a direct line of communication between scientists and patients, she said. Scientists, doctors and patients could exchange information in real-time, which was especially important given the rapid evolution of the virus over the last two years. Iwasaki herself engages with patients via Twitter, enabling her to reach thousands of patients and gather their input. 

“[Iwasaki] responds to every long COVID patient that messages her,” Massey said. “She sees her role as a communicator, not just a scientist.”

The research team has not only conducted empirical analyses on long COVID patients, but has also strived to connect patients with resources and support groups to deal with the debilitating condition, in keeping with how the study originated. 

“[Social media] closes the loop,” Massey said. “Rather than allowing information to trickle down through scientific communities, it’s right there on your Twitter feed in real-time.”

If you or a loved one is suffering from long COVID, email covidrecovery@yale.edu to be connected to care clinics and patient support groups or to participate in the study. 

Survivor Corps has 186,000 members.