COVID ‘Long-Haulers’ Lack Reliable Information, UMD Study Shows

Until 2023, Adriana Alatorre was in peak condition, running at least 30 miles a week before a mild bout of COVID knocked her off her feet. The 49-year-old Pittsburgh running store manager seemed to recuperate quickly, but after hitting the pavement again she increasingly felt exhausted. When plummeting blood pressure sapped so much energy that she couldn’t do laundry and grocery-shop the same day, she suspected long COVID, but finding solid information was a wild goose chase: Online chat boards offered “hocus pocus,” she said, while doctors offered no treatments.

“I was so frustrated with the lack of answers,” said the ultrarunner. “It was just me typing in my symptoms, asking Dr. Google.”

Alatorre isn’t alone. During the pandemic and even now, “long-haulers”—those infected by COVID who experience or develop new symptoms for months or years with no other explanation—have struggled to access relevant facts, adding psychological strain to their sometimes-crippling conditions, according to new research led by the University of Maryland’s College of Information and Department of Communication. That “information marginalization” has bred cynicism, depression and willingness to bend rules among the estimated 400 million long-haulers worldwide battling symptoms like fatigue, shortness of breath and cognitive dysfunction, according to the study published this month in Public Relations Review.

“They’re just being dismissed and gaslighted,” said College of Information Associate Professor and coauthor Beth St. Jean. “They’re facing an information dumpster fire.”

After surveying 135 long-haulers and interviewing 29 of them, the researchers found that for this population, government advisories seemed irrelevant, dubious or contradictory. Some of those interviewed said they lied to stockpile the antiviral medication Paxlovid and encouraged others to do the same.

“You ‘lose’ the prescription, and then you can pick up a new one two days later,” one participant told researchers.

Feeling snubbed by the establishment, participants attempted to become medical experts themselves, scouring the academic database PubMed and researching the 1918 flu outbreak for answers. Seventy percent of survey participants were driven to online forums like Facebook and Reddit for information, despite their distrust.

The study, which received the top paper award in crisis communication from the International Communication Association this month, was funded by a UMD Grand Challenges Grant as part of a program that aims to solve major societal issues with UMD’s research might. In it, the researchers challenge journalists to step up investigations into why long COVID cures and treatments don’t exist; it also urges scientists to broadcast findings more effectively by partnering with public relations professionals.

“You should be able to go to your doctor or the news to get the latest, but for COVID long-haulers, that information doesn’t exist or adequately relate to people,” said lead author and communication Professor Brooke Fisher Liu.

Alatorre joined 10 long COVID groups on Facebook but struggled to find a reliable source. “A lot of groups have people trying to sell you supplements and anti-vaxxers with conspiracy theories,” she said. “You have to filter through it to find studies or articles and ignore a bunch of crap.”

Meanwhile she booked a virtual consultation with a pulmonologist in Mexico, where her father lives, hoping to sidestep U.S. red tape. (Though she believed in Paxlovid’s ability to help many long haulers, she refused to lie about having an active infection, and so was not prescribed the drug.) She later pushed her stateside doctor for an ultrasound, which confirmed a fatty liver, a condition suffered by other long-COVID patients.

Part of the broader Pandemic Readiness Initiative headquartered in UMD’s School of Public Health, the UMD study applies crisis communication lessons beyond COVID. In the event of future outbreaks and disasters, federal organizations must prioritize communities at high risk of being overlooked, like those suffering chronic disease, the authors said. Their research builds off scholarship exploring “forgotten publics”—the marginalized and silenced during crises—a concept that emerged in Hurricane Katrina’s aftermath. The label describes long-haulers, too, the researchers said.

“This likely won’t be the last pandemic,” St. Jean suggested. “Our goal is to figure out how we could have gotten this information piece better so this fiasco doesn’t happen again.”