Demonstrators gather outside of the White House in 2022 to call for urgent governmental action for the millions of people living with myalgic encephalomyelitis, long COVID, and other infection-associated, chronic diseases
It’s been four years since the start of the Covid-19 pandemic, and it is estimated up to 65 million people around the world are still struggling with long Covid symptoms. Despite research and recommended treatments, there is no cure.
Long-haulers have organized their own advocacy groups and communities to discuss the latest research, treatment options, and recommendations to cope with painful, daily symptoms. But the need for comprehensive, consistent, and trustworthy information about long Covid can be difficult to track down.
That’s why health and science journalists Betsy Ladyzhets and Miles Griffis co-founded The Sick Times, a digital publication that launched last November to “[chronicle] the long Covid crisis.”
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The duo sat down with Nieman Reports to discuss The Sick Times, centering and highlighting patient experiences in long Covid reporting, learning from media coverage of previous epidemics and outbreaks, and diversifying perspectives in the long Covid community. This conversation has been edited and condensed for clarity.
How did you first come up with the idea for a publication focused on long Covid? What were those early conversations like when creating The Sick Times?
Betsy Ladyzhets: I started to see long Covid come up again and again, as this issue can’t be resolved quickly. I think a lot of people want to pretend that Covid is over, that the pandemic is over. People love to say, “during the pandemic” as though that is a time that’s past and not a time that is still present with hundreds of people dying every day and thousands of people being hospitalized on a regular basis.
In the last year or so, I’ve become increasingly frustrated with the mainstream media coverage on it. I had a lot of story ideas that I just couldn’t do, that I would be pitching and just get “no’s” or that I would pitch a feature and have it work out to be a short news story that I felt didn’t really capture the full scope of the issue I wanted to write about. Between that and the changes in Covid data collection that were impacting my projects, it felt like a good time to shift. And so I asked Miles, if [he’d] be interested in carrying this thing with me. And now here we are.
Miles Griffis: I’ve been a freelance journalist for about six or seven years now. I got sick in early 2020 with Covid. And then I developed long Covid, which I still have now. I started reporting more on long Covid in 2020, [from] more personal angles, like writing essays on people just sharing their experiences. We [were] connecting, figuring out what was happening to all of us. I began reporting on it for a lot of different publications, which was great, and I worked for some great editors who were really interested in diving into it.
But as [the pandemic] kept going on and people were still sick and long Covid was still a topic, it seemed that people started to sort of drop out and pitches would go unread — you wouldn’t really get responses from editors. Others told me they wanted a long Covid story, but they wanted it to be a positive story. So there was a lot of that with pitching and responses from some editors [who said], ‘We want to cover this topic, but we don’t want to go into what it actually means.’
That’s when Betsy reached out to me this summer, and she asked if I wanted to start this. We had some conversations in the past just brainstorming how to better pitch editors, or how to cover long Covid better as freelance journalists. And we both just got to a point, when we said we need to start doing this ourselves, and we can cover the stories we want to cover.
I also started doing more research and looking at other publications that studied specific diseases. I’ve been a reader of POZ Magazine for a while, which covers HIV and AIDS. So we wanted to start something similar for long Covid, and include a vast array of perspectives that get left out of mainstream media, and dive into the research that is coming out every day.
What are some common misconceptions about long Covid that you want to clarify for your readers?
Griffis: I think one of the most common is the amount of minimization that happens in the mainstream press. Publications from the Los Angeles Times to The Washington Post, The New York Times would describe Covid and say that [symptoms] last for weeks or months. That’s a really common phrase that is published a lot. We know that long Covid lasts for at least four years, kind of like many of the common illnesses and conditions that are diagnosed with it. These are lifelong conditions that exist. So we feel that those [publications] have not been informing their readers about the realities of this illness and how long symptoms can be, which then makes readers think that risking getting long Covid is worth it, and that it’s not a serious thing that you actually have to worry about.
Secondly, I think a lot of these publications don’t consult with patients when they interview for sources, they often interview experts. And the lived experience of patients is one of the most important things, especially in marginalized communities. They are the ones experiencing it, they’re the ones dealing with doctors. So there’s been a lot of gaslighting within legacy journalism and mainstream media about that.
Ladyzhets: Sometimes media coverage often focuses on a sort of narrow subset of people. We know from our reporting, and from research that’s been done, people with long Covid who are most likely to recognize that they have the disease are often more privileged to begin with. So we get this perception of, “Oh, it’s a lot of white women who are upper middle class,” when we’re only seeing the people who may be able to find information, resources, and be in a position to be interviewed for stories. But we know from data sources like the U.S. Census and CDC’s Household Pulse Survey that if you ask people questions in a way that is not directly saying, “Do you have long COVID?” But asking instead, “Have you had persistent symptoms after a Covid case?” and framing it in such a way that it doesn’t require prior knowledge, that the rates are actually higher in like lower income communities.
A lot of these publications don’t consult with patients when they interview for sources, they often interview experts. And the lived experience of patients is one of the most important things, especially in marginalized communities. They are the ones experiencing it, they’re the ones dealing with doctors. Miles Griffis, co-founder of The Sick Times
What are some other topic areas and bets that you really want to cover that ties into Long Covid coverage for readers?
Ladyzhets: I’m working on a story about how the census tracks disability, and how that doesn’t include people with long Covid in accurate numbers. And so I’m thinking about how public health systems, support systems, disability benefit systems, how [are they preparing] to better deal with this vastly growing population of people with Covid? Who’s gonna fit into these buckets? And who does already and might not have the same kind of resources right now?
Do you see similarities to covering long Covid with climate change – that readers and editors tune out overly negative coverage and crave more solutions reporting?
Griffis: [With] both of them, in the larger newsrooms, there can be pushback because acknowledging them and reporting on them with grit and teeth basically holds larger institutions accountable.
There is a lot of hope in this research. We’re only three years three or four years into this pandemic now, and you have potential biomarkers that have been released. We have these targets of hope that could lead to treatments. We wanted to found this site so that we could really push the stories that are true and show … that this research can happen and these cures can happen.
Ladyzhets: One thing that I remember that we heard from a longtime HIV journalist [was that] he and his colleagues always thought about writing for the people who have the condition. And I think this is a similar challenge with long Covid coverage in the mainstream media, where the assumed reader of the article is not necessarily someone with long Covid, it’s just a curious reader of a Popular Science article. I think that really changes the framing: You don’t need to spend a bunch of time explaining to them what the condition is. You can just get into the science, get into the new research, get into the new policy development. And then you can focus on what’s actionable.