Millions are struggling with debilitating symptoms believed to be the consequence of COVID infections. Now, a survey from an online patient advocacy group has provided an important clue to better understand why this illness lingers in many.
“Does anyone feel like explaining long haulers symptoms to friends and family make you seem crazy? #thestruggleisreal”
"I’m tired and afraid”
“Every day I feel like I’m dying a little more. Meanwhile life around me goes on.”
At least 10% of COVID-19 survivors experience long-term consequences, a condition known as long COVID-19. The symptoms—including fatigue, insomnia, and brain fog—can be debilitating, preventing these individuals from returning to work or in some extreme cases even getting out of bed.
As they struggle to find relief, many have turned to social media for support and answers. Survivor Corps, for example, is a Facebook group for COVID-19 survivors that has nearly 170,000 members. And now, scientists are turning to this type of group to connect directly with patients and organize new research.
The idea originated with Akiko Iwasaki, PhD, the Waldemar Von Zedtwitz Professor of Immunobiology and Molecular, Cellular and Developmental Biology, who is a frequent and successful user of social media. With almost 140,000 Twitter followers, Iwasaki’s platform is a place where researchers exchange ideas, comment on work, and interact with scientists and patients. Scrolling through her feed last year, she began noticing posts from people struggling with long COVID-19. Eventually, she came across Survivor Corps. The group, which also has a Twitter presence and a website, has been monitoring the impact of the disease as well as symptom changes following vaccination. Through a poll posted on the group’s Facebook page, Iwasaki learned that 40% of its members felt better after being vaccinated, while 15% felt worse.
“Survivor Corps certainly was one of the first to sound the alarm that the vaccine might be a clue for long COVID,” said Daisy Massey, postgraduate associate and study coordinator for the project.
Working with Survivor Corps, Iwasaki and Harlan Krumholz, MD, the Harold H. Hines, Jr. Professor of Medicine and professor of epidemiology and public health (principal investigator of the protocol) and Iwasaki’s team began recruiting patients who have long COVID-19 for the ongoing study. Before participants receive the vaccine, the researchers collect blood and saliva samples. Then they follow up with participants six and 12 weeks after vaccination to collect more blood and saliva samples to look for changes in the immune system.
The team has two main hypotheses for why individuals may struggle to recover after infection with COVID-19. First, the researchers believe that some individuals with long COVID-19 might be experiencing a persistent virus infection, and the vaccine can provide relief because it induces a response in the body that gets rid of the lingering virus. Second, they believe that long COVID-19 in others might be driven by autoimmune disease. In those instances, the vaccine might be making people feel better by inducing the production of certain kinds of cytokines, or the vaccine may be worsening symptoms by exacerbating autoimmune responses. “We are really trying to get to the bottom of why people are suffering,” Iwasaki said.
The study highlights the importance of online patient groups that listen to and ask questions of their members. Survivor Corps’ Facebook poll clued the research team to zero in on vaccination status as a key variable. Iwasaki and her team believe that social media will become a permanent fixture in research for planning, strategizing, recruiting, and disseminating information. “Social media has changed the dynamics between communication among patients, doctors, researchers, and journalists,” said Iwasaki.
Through Twitter, Facebook, Reddit, and other social media platforms, users have immediate access to information through their smartphones. And researchers like Iwasaki can use social media to interact with patient groups and quickly communicate their own science without having to wait for the traditional publication route. As researchers follow the rapid exchange of information and make a wider range of connections, they may be able to begin connecting the dots on larger scientific trends much more quickly. Of course, not all information online is accurate, so Iwasaki is always sure to cross-check—the finding that some of those struggling with long COVID-19 improved after vaccination, for example, was corroborated by others.
“For people who do human research, social media is an underappreciated resource,” said Jon Klein, a fourth-year medical and doctoral student in Iwasaki’s lab. “Social media is a middle ground where patients who are experiencing these symptoms can interact with scientists in a meaningful and productive way. It’s the responsibility of scientists now to engage with patient groups who are looking for ways to get involved and help.”