In May 2020, Courtney Dunlop, 40, called her doctor to report what she thought were pneumonia symptoms: muscles aches, fatigue, coughing fits, and unbearable chest pain. It turns out that she had COVID-19. Eight months after visiting the drive-up testing site in her hometown of Springfield, Missouri, Dunlop says her coughing has subsided and she can finally walk without becoming winded. Despite these improvements, Dunlop is still severely fatigued and frequently needs to take a midday nap. Most days, she can’t tell if the heaviness in her chest and her racing heart are still symptoms from COVID-19, or if she is feeling an unrelated symptom of anxiety every day. She guesses that it’s a perfect storm of both.
The novel coronavirus has been riddled with mystery since the World Health Organization declared the SARS-CoV-2 outbreak a global pandemic more than 10 months ago. One ongoing puzzle is why people like Dunlop get COVID-19 and experience symptoms—like unrelenting fatigue, breathing difficulties, and hair loss—months after the infection has cleared their bodies. Some people maintain their COVID-19 symptoms well after they have supposedly recovered from the acute infection. Other individuals develop new symptoms like brain fog that they didn’t experience when they were sick with COVID-19. Experts are still looking into why all of this happens.
People who experience this phenomenon of unrelenting symptoms are often called COVID-19 “long-haulers,” but medical experts refer to the condition with technical terms like post-acute COVID-19 syndrome, David Putrino, Ph.D., director of rehabilitation innovation for the Mount Sinai Health System and an assistant professor of rehabilitation medicine at the Icahn School of Medicine at Mount Sinai, explains. “What we’re seeing is this looks a lot like other post-viral syndromes that have occurred with SARS, swine flu, and even Ebola,” he tells SELF. “There are too many cases of post-acute COVID-19 syndrome to ignore. We have to put clear and effective management strategies into place or else this is going to follow us for quite some time,” he says.
Adding to the mystery, experts are still defining what post-acute COVID-19 entails, and more importantly, why the syndrome occurs. (A syndrome is the medical term for a bunch of symptoms that occur together without an understood mechanism.) Here’s what we know so far about COVID-19 long-hauler experiences and how experts are trying to help people regain their pre-coronavirus health.
How COVID-19 attacks the body
First, it’s helpful to understand why people can experience such vastly different symptoms when they all become sick with the same disease. “This is a respiratory virus and the primary symptoms people get tend to be respiratory in nature, so a stuffy nose, sore throat, and cough,” Amesh A. Adalja, M.D., infectious disease, critical care, and emergency medicine physician and senior scholar at the Johns Hopkins Center for Health Security, tells SELF.
But the virus can attack multiple body systems, which explains why some people with symptomatic coronavirus cases report other symptoms like nausea, vomiting, and diarrhea. “Most people get the respiratory effects, but it is a systemic infection, so some people get some of the other effects,” says Dr. Adalja.