These people survived the coronavirus, only to struggle with lingering symptoms months after recovery. Here's what doctors say about this mysterious syndrome.
One day in March, Diana Berrent woke up with a fever and "felt like an elephant was sitting on my chest." An international photographer and mom of two who lives in a New York City suburb, Berrent found out she had a moderate case of COVID-19. "I was sick for a couple of weeks but recovered at home with Tylenol and Gatorade," she says. That's hardly the end of her story.
Soon after, Berrent founded Survivor Corps, a social media–based group of patients determined to improve their own health, educate the public, and aid the scientific community in efforts to better understand the novel coronavirus. The group's Facebook page recently hit 100,000 members, many of whom come to the group to discuss the symptoms they've been having long after they "recovered" from COVID-19.
"Survivor Corps members are recording experiences in real time, so we're hearing about things before they hit the media," Berrent tells Health. "We saw 'COVID toes' a month before it hit the media. Same with hair loss." Other complaints have included a prolonged loss of taste and smell, as well as more serious issues such as mini strokes and new-onset diabetes.
This summer, the group joined forces with a professor at Indiana University School of Medicine to survey survivors and learn more about what some of the "long haulers" are going through. More than 1,500 people responded to their July survey. Some reported lingering respiratory and cardiovascular trouble, but they concluded that joint pain, rashes, muscle aches, dizziness, confusion, vision changes, depression, and anxiety were also relatively common.
Long-lasting fatigue, muscle and body aches, and difficulty concentrating or focusing seem to be especially widespread among COVID-19 survivors. This constellation of symptoms, which some have dubbed "post-COVID syndrome," has been likened to chronic fatigue syndrome (CFS), though most people who develop it following COVID-19 do not meet the diagnostic