There’s a lot we don’t know about so-called “long COVID,” the phenomenon in which COVID-19 patients begin to suffer from mysterious symptoms after recovering from the disease. But a web survey being conducted by a team at the Johns Hopkins Bloomberg School of Public Health hopes to answer some of those questions.
Researchers are seeking out 25,000 participants who have had either diagnosed or suspected COVID-19 to detail their experiences with the disease. Through this study, the researchers hope to better understand elements of long COVID, including how long it lasts, how it manifests and who it affects.
Anecdotally, long COVID seems to manifest mostly in patients who had mild or moderate cases of COVID-19, and some sufferers have reported that their symptoms have lessened or disappeared after receiving a COVID-19 vaccine. The condition also seems to be characterized by a wide variety of symptoms, including both neurological symptoms such as cognitive dysfunction, headaches and fatigue, as well as some symptoms closer to those we associate with the disease itself, like shortness of breath and fever.
Bryan Lau, an associate professor within the Bloomberg school and a researcher on the project, believes that understanding the different ways long COVID presents itself is the first step to deciphering the different treatments for the condition.
“Long COVID is probably going to end up being a very heterogeneous thing,” Lau said. “With that heterogeneity, it becomes important to identify what exactly is long COVID,’ are there different groups, are there different phenotypes?”
The study consists of an online survey, located at covid-long.com, that can be taken by anyone who has had COVID-19. It asks participants for demographic information, information about when they contracted COVID-19 and what their symptoms were, what comorbidities they have, what their experience, if any, has been with long COVID, and more.
Researchers also hope to find out what percentage of COVID-19 patients develop long COVID symptoms and to estimate how many people, total, suffer from them. This isn’t the first time viral infections have proven to lead to symptoms that last beyond the initial disease, but it seems to be the most widespread example of the phenomenon, with approximately 15-30% of over 30 million COVID-19 patients nationwide experiencing long-haul symptoms, Lau said.
Gaining a better understanding of how many people suffer from long COVID will not only help health care professionals better understand how the condition may affect the health care system but will also indicate how it might impact the economy, considering that the effects of long COVID have prevented some patients from being able to work.
“I think it has the potential to be a big drain on the system,” Lau said.
Hopkins is not the first institution to study long COVID. A study of medical records by the University of California found that 32% of COVID-19 long-haulers were initially asymptomatic when they tested for the virus. It also found long-term symptoms present in children.
A study conducted by the Northwestern Memorial Hospital in Chicago through its clinic for those suffering from neurological symptoms following a bout with COVID-19 reported large distinctions between how long it took long-haulers to recover. Some improved within two months, and others made little progress in nine.
But researchers at Hopkins are eager to have a larger, national body of data to pull from, especially so that they have robust data about how long COVID impacts different races, age groups, genders and other populations. The survey’s 25,000 responses will also give researchers a pool of participants to pull from if they want to follow up on survey responses.
Lau expects long COVID to gain more attention from researchers as the severity of the pandemic wanes with the distribution of vaccines and increased knowledge of how to treat acute COVID-19.
“We (were) really occupied with dealing with the pandemic and the acuteness,” he said. “Now that we’re getting a hand on how we treat these individuals, how we protect health care workers, all these things, now we can start turning out attention to, OK, what’s the next thing.” The National Institutes of Health, for example, also recently announced a $1.15 billion initiative to study long COVID.
“We decided to pursue this not because we weren’t busy already … but mainly because we saw a need,” he said. “We’re really hopeful that we can contribute in a meaningful way.”