Long COVID coverage often falls short, but here's how reporters can do better

When I first started writing about long COVID not long after the first wave of the pandemic coursed through the country, there was no guide I could follow. Everything was terrifyingly new. 

During those early months, information moved both slowly and quickly. Health agencies often took weeks and months to provide news on symptoms and infectiousness, as they waited for better research. But in online support groups and on social media, patients were sharing information at a rapid rate, providing live updates on the virus as it moved through their bodies and lingered via long-term symptoms.

I was one of these patients. I got sick on March 13, 2020, and although I was 26-years-old and otherwise healthy at the time of my infection, my case was serious and required hospitalization. In addition to the hallmark respiratory symptoms described in news stories, I developed severe gastrointestinal issues, hives and rashes. I lost my sense of smell, and experienced migraines and severe fatigue — symptoms I did not see mentioned in the media or on the Centers for Disease Control website in those early weeks. Even more confusing, I didn't seem to be improving. My symptoms cycled and morphed, often worsening after brief periods of relief. After I was discharged, I wrote about my experience in The New York Times and launched a Slack support group for others dealing with COVID-19. In patient groups like mine, news was breaking every day, but the topics we were grappling with weren’t showing up in the mainstream media. 

That gradually changed over the course of the past year. Now, every major news organization has covered “long COVID,” the term coined by patients for long-term symptoms following a COVID-19 infection. However, news coverage is still falling short, and we risk repeating mistakes of the past. 

After a year of writing about long COVID, interviewing patients, and being interviewed myself, I created a comprehensive guide for journalists covering the long-term symptoms of COVID-19.  To understand more about what we can learn from the past, I talked with veteran health journalists David Tuller, Linda Villarosa, and Julie Rehmeyer, as well as New York Times editorial board member Mara Gay, who is recovering from long COVID. I also spoke with patients and activists to learn more about how patients want reporters to tell their stories. Based on these conversations, a few key pieces of advice stood out:

1) Include a diversity of long COVID patient stories.

Long COVID is an umbrella term that includes people with a range of symptoms and experiences, but media coverage often focuses only on patients with positive PCR tests. As a result, stories on long COVID often exclude the experiences of patients of color, working-class patients, and other marginalized groups, as well as those who became sick during the first wave. Testing capacity was limited at the start of the pandemic, with tests often only available for hospitalized patients, like myself. But patients without PCR test results have also experienced long COVID, and often face unique challenges. 

Many long COVID patients were turned away from emergency rooms and acute care centers early in their illnesses, sometimes as a result of overcrowded hospitals or biased providers. Patients without positive test results have sometimes been able to access clinical diagnoses, but there are often barriers to accessing the limited pool of clinicians who understand long COVID and can provide such diagnoses. These stories deserve to be told.

[Click here to view the Long COVID source list, compiled by Fiona Lowenstein and Betsy Ladyzhets]

Telling diverse patient stories also means highlighting patients with different presentations of the illness, like those with primarily neurological symptoms or those who make partial or full recoveries. The New York Times has done a good job of highlighting neurological symptoms associated with COVID-19 through articles like this one from health and science writer Pam Belluck, but as the Times’ Mara Gay noted, there have been few mainstream media stories on long COVID recoveries. This is despite the fact that some patients make a near or full return to their prior state of health. “I dread when friends and acquaintances send me pieces on long COVID because there is rarely anything helpful or new,” Gay explained. “It’s usually the worst-case scenario.” 

In telling recovery stories, journalists can more accurately portray recovery from illness, as a sometimes slow and non-linear process. “There’s a lot of misunderstanding in the able-bodied community about what healing can look like,” Gay said. 

Finally, stories on long COVID recoveries can highlight important social and economic inequalities that may contribute to some patients being able to recover more quickly or manage symptoms better. For instance, a recent story I wrote for The Guardian examines the efficacy of seemingly affordable symptom management techniques like rest and pacing, noting that these options may still be inaccessible for many patients without financial privilege.

2) Avoid premature generalizations. Acknowledge the unknown.

It’s important for journalists covering long COVID to acknowledge everything we still don’t know about the illness, like which treatments are most effective and which populations have been the most impacted. But according to David Tuller, a journalist and senior fellow in public health and journalism at UC Berkeley's Center for Global Public Health, journalists should be careful to note that “medically unexplained” does not necessarily mean “medically unexplainable now and forever.” Just because science and medicine don’t yet have an explanation for what a patient is experiencing doesn’t mean that a patient’s experience is unprecedented or illegitimate. 

This sort of flawed thinking has sometimes led journalists to dispute or mischaracterize patients’ experiences. In the case of ME/CFS (a debilitating post-infectious illness often referred to as myalgic encephalomyelitis, or sometimes as chronic fatigue syndrome), early media stories falsely described the condition as psychological, due to both a lack of scientific research and patients’ accounts of “unexplained symptoms.”

Reporters need to be especially careful when drawing conclusions about the demographics of long COVID patients, as there have been almost no large-scale studies on this topic. While outreach to long COVID clinics and online support groups can offer journalists opportunities to learn more about the condition and reach patients, it is unwise to extrapolate conclusions about the larger long COVID population from these communities alone, since they may disproportionately include patients with the resources to find care.

3) Consider what long COVID shares with similar chronic conditions.

There is a long history of prolonged illnesses following acute infections, but these conditions have rarely received significant media attention. Many in the medical and scientific communities have also disregarded post-infectious illnesses, sending patients on long, frustrating journeys in search of answers.

“Long Covid has come as a shock to most people, including most medical professionals. But for those of us familiar with ME/CFS and post-viral illness in general, it wasn’t just unsurprising, it was inevitable,” Julie Rehmeyer explained. “The reality is that essentially every serious virus leads to lasting illness for some percentage of people, and the fact that so few people know this is a failure of both journalism and medicine.” 

Some long COVID and ME/CFS patients share experiences, and ME/CFS experts will often be relevant to stories on long COVID. Some issues that impact long COVID patients are unique, but others are shared across disabled and chronically ill populations. For example, articles on long COVID patients navigating disability benefits can also acknowledge the ways in which this system impacts other populations as well.

4) Be careful when describing declining infection rates and the “end” of the pandemic.

A quick tour of the history of HIV/AIDS news coverage in the United States offers lessons here. Back in 2004, the Kaiser Family Foundation did a study analyzing media coverage of HIV/AIDS, from 1981 to 2002. They found that coverage began to decrease in the late 1980s, as focus shifted away from the domestic epidemic to international HIV/AIDS. “The attention did shift,” recalled Linda Villarosa, who has reported on the HIV/AIDS epidemic from its start in the United States. “But ... that’s when rates in the Black community surpassed the rates among white gay men.” Villarosa is one of several scholars, academics and journalists who believe a lack of media coverage on U.S. patients in the 2000s, and Black Americans specifically, may have contributed to the erasure of growing rates of HIV infections amongst certain Black populations in the United States. 

It’s a story that continues to this day. In 2017, Villarosa published “America’s Hidden HIV Epidemic,” in The New York Times Magazine, highlighting alarming rates of HIV infection among Black LGBTQ+ men in the Southern United States. The piece awakened many Americans to the reality of HIV/AIDS in the U.S., but the population Villarosa covered had been struggling for decades without much media attention or monetary support.

“I dread when friends and acquaintances send me pieces on long COVID because there is rarely anything helpful or new. It’s usually the worst-case scenario.” — Mara Gay, New York Times editorial board 

“It wasn’t only a shift in media,” Villarosa explained of the media’s earlier shift in focus. “It was a shift in money. When the epidemic seemed like it had been conquered here, the aid went to Africa.” 

Many of the long COVID patients I interact with are fearful of being similarly forgotten as the news cycle shifts. And the story of HIV/AIDS suggests that Black Americans and other people of color with long COVID may be especially at risk of being forgotten by the national media. Gay is concerned the media is moving on from the pandemic too quickly. “They want this to be over, even though it’s not over,” she said.

5) Be critical when examining peer-reviewed studies.

David Tuller is an expert at tapping into patient communities to better understand scientific research. In 2011, Tuller wrote an article for The New York Times detailing a new study on ME/CFS. After the story ran, he received critical feedback from patients that said he’d failed to address crucial flaws in the research. Tuller listened to these readers, and dug deeper, discovering research bias, ethical concerns, and methodological issues that would eventually lead to the study being largely discredited.

Tuller thinks all journalists covering long COVID need a “crash course in epidemiology” so they can learn how to appropriately examine and understand research. He recommends educating oneself on terms like “case definition,” “cause,” “association,” “clinical significance” and “statistical significance.” He also suggests journalists seek out experts in science and medicine that they can return to, building trusted relationships over time. 

“I think the people with the lived experience give me as much as the so-called experts,” said veteran journalist Linda Villarosa.

Tuller is concerned that because long COVID is such a broad term, researchers studying it may unintentionally include too many people with different conditions, creating confusing or unreliable results. Journalists should read emerging research with a critical eye, paying close attention to which patients are included and excluded from research studies, and why. 

6) Center the stories and experiences of patients.

Too often, news stories on long COVID quote only clinicians or scientists as experts, relegating patients’ stories to a laundry list of symptoms. But many patients — like myself — have become experts on long COVID through their lived experiences. “I think the people with the lived experience give me as much as the so-called experts,” Villarosa told me. This seems especially true when covering a novel illness. 

When reaching out to patients, Villarosa suggests starting with doulas, patient navigators, and activists who are familiar with patient communities. She also recommends looking for patients who seem eager to tell their stories. “I choose people who have a goal ... to make a difference,” she said. 

Journalists should also keep in mind that physical symptoms do not exist in a vacuum, and ask about patients’ experiences finding a doctor or getting time off work to seek out care, challenges that can often exacerbate physical symptoms and mental health issues. 

Telling diverse patient stories is one of the most important jobs facing journalists right now. The COVID-19 pandemic appears to be the single largest mass disabling event in modern history, but even before the pandemic occurred, health stories that emphasized patients’ perspectives have often been most effective at driving home the human cost of grave health challenges. Breaking down the barriers between experts and patients, research and lived experiences, is a crucial way of advancing our reporting and understanding of long COVID. 

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Ed. Note: While the Center for Health Journalism follows the AP Stylebook in referring to “long COVID,” the guide referenced in this article, Body Politic’s “Comprehensive Guide to Covering Long COVID,” prefers the capitalized version, “Long COVID.”