When the COVID-19 pandemic erupted in the spring of 2020, it was all-hands-on-deck. The medical community was acutely focused on understanding the new disease and triaging the massive increase of COVID-19 patients flooding the healthcare system.
"All of us were working on questions related to why some people got infected and why others didn't, why some got severe disease and others didn't, and what treatments could help reduce morbidity and mortality," says Shruti Mehta, deputy chair of the Department of Epidemiology at the Johns Hopkins Bloomberg School of Public Health.
Doctors and researchers expected there to be long-term implications to the disease, particularly for patients who spent significant time in the ICU and on a ventilator. And a year down the road, many COVID-19 patients are still struggling with lasting effects, but it's not quite the population that the medical and public health communities expected to see.
There's a growing number of "COVID long-haulers," people who haven't fully recuperated from COVID-19 despite the passing weeks and months. While they may have recovered from the initial acute stage of the disease, they continue to experience a constellation of symptoms, often referred to as Long COVID or post-viral syndrome. Like the carnival game Whack-A-Mole, symptoms pop up unexpectedly and unpredictably—sometimes new complaints or in differing combinations—and evade treatment. People who used to exercise daily can no longer walk their dog or up a flight of stairs without difficulty. Others experience extreme fatigue and body aches and pains. Still others struggle with brain fog and cognitive problems or haven't regained their sense of taste or smell. The disease continues to affect their day-to-day life in profound ways. In one survey, nearly half of long haulers had to reduce their work hours.
Most strikingly, many long-haulers appear to be individuals who experienced mild or moderate cases of COVID-19 and weren't hospitalized. And it's made researchers start to think differently. "The more that we saw these numbers increase, the more recognized, as epidemiologists, that there's really no numbers out there to guide us" and help understand what's going on, says Priya Duggal, professor at the Johns Hopkins Bloomberg School of Public Health.
In February, Duggal, Mehta, and associate professor Bryan Lau launched the Johns Hopkins COVID Long Study to better understand the long-term effect of COVID-19. The study is open to individuals who have been diagnosed with COVID-19 or have experienced symptoms of COVID-19 and includes a 10-15-minute survey. The survey aims to get a sense of the range of lived experiences of COVID-19 patients. It includes questions about demographics, health history, and COVID-19 symptoms, if any—both initial symptoms as well as persistent Long COVID symptoms. Participants can also share their individual stories with researchers too.
The team hopes to reach a total of 25,000 individuals and they are well on their way. Within the first month of the study's launch, approximately 6,500 people have responded to the survey, just over a quarter of the team's goal. The research team hopes to build on this initial study to continue tracking the trajectory of COVID-19 among patients.
COVID-19 isn't the only disease known to cause long-haulers. Other infections can also result in lingering and persistent symptoms that don't resolve after the initial acute phase. What's different with Long COVID is the sheer number of people infected with the disease, leading to a vast number of people impacted by these persistent and debilitating symptoms. Recent research estimates that between 10%-30% of patients report prolonged symptoms. With more than 28 million cases of COVID-19 in the United States, that could mean millions of Americans may be impacted by Long COVID, which has significant public health implications.
Currently, the medical and public health communities don't have a good handle on COVID-19, let alone how to define its long-term, chronic phase. "We don't have a huge body of evidence at this point," says Mehta. Outside of a few small studies from the United Kingdom, most evidence of Long COVID has been reported anecdotally through grassroots efforts like the Body Politic COVID-19 Support Group, Survivor Corps, Patient-Led Research for COVID-19, and Long Haul COVID Fighters. Until recently, there hasn't been many resources devoted to long-haulers. Now, a year into the pandemic, as more individuals continue to struggle with the long-term effects of the disease, the focus is shifting. More research is forthcoming, including a new initiative from the National Institutes of Health and studies at institutions including Johns Hopkins and Mount Sinai focused on their clinic patients.
The Johns Hopkins COVID Long Study, on the other hand, will be one of the largest studies to date. By casting a wide net, researchers hope to reach a much larger and more representative sample of individuals who have been infected with SARS-CoV-2 in the United States in order to understand the full spectrum of the disease—why people have different responses to the virus, how many people have symptoms that clear, how many people have longer-term symptoms, and how many have no symptoms at all.
In particular, they hope to get a better picture of those with Long COVID. "We're going to learn much more about the set of symptoms that comes with Long COVID," says Lau. "There may be a wide variety of symptoms and not everyone will present the same way. There may also be several different underlying pathways involved in the development and persistence of the symptoms." Understanding the prevalence, symptoms, and trajectory of Long COVID not only helps with developing better treatment plans, but it also gives public health departments, government officials, and the medical systems data to help with health planning and policy decisions.
"This is just one attempt to try to understand those people who have long-term symptoms, and if we can understand what's going on, perhaps we can help address it. Similar to what we tried to do in the early stages of understanding what kind of treatments people needed in the hospital," says Duggal. "It's just trying to inform us more so that we can help those people who are affected."