BROOKE GLADSTONE Back when the controversial Great Barrington Declaration was penned, few knew about long COVID, especially those who didn't have it. It certainly would have changed the calculus. Infection would not be a get out of jail free card for the millions with long COVID, but more of a miserably prolonged house arrest. Symptoms such as brain fog, fatigue and nerve damage can persist for months or even years after an initial infection. A new CDC study published Tuesday claims that as many as one in five COVID patients may develop the condition even if they weren't very sick in the first place. But science doesn't yet understand the mechanisms underlying its baffling set of symptoms or how to cure it. Fiona Lowenstein, an independent journalist, first experienced COVID symptoms on March 13th, 2020 while living in New York City.

FIONA LOWENSTEIN And I got sick as a 26 year old with no known significant preexisting conditions. So I felt very confident, let's say, that I would recover quickly.

BROOKE GLADSTONE After a brief hospitalization for shortness of breath. Loewenstein expected a quick recovery only to face a new series of symptoms ranging from gastrointestinal issues to skin rashes to intense migraines.

FIONA LOWENSTEIN So I told myself that the sinus problems and the post nasal drip was the result of seasonal allergies come early. And I convinced myself that the GI issues were because I had eaten a little bit of food at the hospital and I must have gotten food poisoning. So that just kind of goes to show you how unwilling I was to consider this as an outcome, because I just didn't have the framework to understand it was possible.

BROOKE GLADSTONE So back in March 2020, Loewenstein started writing about long COVID in the New York Times when no one else was, and building a global support network of 11,000 long COVID patients, trading notes on symptoms, treatments, doctors and new research. Loewenstein then produced a patient centered guide for journalists reporting on long COVID to help fix what ailed the coverage of a puzzling, sometimes stigmatizing condition. Welcome to On the Media, Fiona.

FIONA LOWENSTEIN Thanks so much for having me. It's great to be here.

BROOKE GLADSTONE Much reporting on long COVID falls into the clichés of spotlighting young, healthy, athletic adults who are suddenly sick with long COVID for months or even years.

[CLIP]

LONG-COVID PATIENT March 13th, 2020. Till now, I've been dealing with debilitating long COVID.

LONG-COVID PATIENT I was healthy, working out every day. Weekends I would go travel, running 14, 16, 18 miles. My first symptoms that really showed up was shortness of breath. I still get tingling and numbness. [END CLIP]

BROOKE GLADSTONE These stories are intended, I guess, to emphasize that anyone who gets the virus can experience long COVID, which is precisely what you think is very important for people to understand. But you've also said that this kind of coverage featuring the able bodied, the young, the white is not necessarily a good thing.

FIONA LOWENSTEIN It's important to remember that it's not just the young and healthy who are getting sick, but that the lives also matter of people who may have already been dealing with a chronic condition or a disability and are now dealing with worsened health. This narrative also doesn't allow room for one of the more interesting facets, in my opinion, of long COVID diagnoses, which is that long COVID diagnoses are often accompanied by additional diagnoses. A complex chronic condition forms where they are dealing with that long term, either for several months or several years or often for the rest of their lives. And a lot of the patients that I interview for the stories I write say that they have found the most helpful care from not necessarily the clinic that set themselves up yesterday or six months ago to treat long COVID. But from a provider who has been treating patients with post-viral illnesses for a long time. There are also people who are getting diagnosed with long COVID. They're actually getting diagnosed with conditions that they most likely had prior to contracting COVID, but which they were not diagnosed for for any number of reasons, including the fact that providers often aren't super well educated on these illnesses. So I personally think that's a really interesting story. Right, because it also tells us something about the way medicine has treated these illnesses historically and the various barriers to accessing care that some long COVID patients may have faced before they even realized they were facing them.

BROOKE GLADSTONE Especially those in marginalized communities. People who are not generally featured in these stories. Actually is their data that says they are disproportionately left out of these stories.

FIONA LOWENSTEIN I wish that there had been a comprehensive media analysis of long COVID that could give us that information at this point. But unfortunately, we don't even have the data on how many people in this country are suffering from long COVID. I'll mention a story that was written at some point last year that had the headline Long COVID Predominantly Affects White Women. The story was basically pulling from studies that were largely recruited from long-covid clinics and again, long-covid clinics. They mainly exist in major cities. They're often attached to universities. Often they do not treat patients who are uninsured, although that is changing to some extent in some regions. So if you're recruiting predominantly from long-covid clinics, your demographics are going to be different from if you were recruiting from anyone who's ever had long COVID.

BROOKE GLADSTONE You've also called for more precise language and long COVID coverage. For example, the word treatment you say is often thrown around, unmindful of the confusion it can cause.

FIONA LOWENSTEIN The biggest issue that comes up is the question of supportive treatments versus cures. It's very common for COVID long haulers to have mental health issues. I mean, a lot of people are experiencing really intense financial issues as a result of developing long COVID. We've also seen a lot of patients losing ties with their family members or their coworkers as a result of this sidelining for mainstream society. However, there's sometimes a misunderstanding that because there are perhaps high rates of anxiety or depression or psychosis among long COVID patients, that means that those psychological illnesses are the cause of the physical symptoms. That seems extremely unlikely based on all of the research that's been conducted. So when we're talking about mental health treatment, for example, we want to be clear that this is a supportive treatment. It's something that's going to help someone lead a better quality of life, but it's not going to cause all of their long COVID symptoms to vanish. And I think that's an important thing to be clear about here.

BROOKE GLADSTONE Another term you're not crazy about is the phrase medically unexplained.

FIONA LOWENSTEIN So medically unexplained symptoms might seem like just a very basic term that is essentially saying we don't know what the root cause of these symptoms are. However, it's often used or interpreted to imply that there is no physical biomedical root cause when there is no obvious root cause for disease when researchers can't find something. Oftentimes the response is, Well, it must be in the patient's head. But there is a long precedent of complex chronic illnesses that have multiple systemic issues where a root cause is not always evident.

BROOKE GLADSTONE You invite journalists to consider the difference between long COVID survivors versus patients. Why does that distinction matter?

FIONA LOWENSTEIN Some long COVID patients like calling themselves COVID survivors, but especially at the beginning of the pandemic, when there was a lot of news coverage of, you know, the survivors and the people being discharged from the hospital, those of us who had remained sick felt a little bit like, this is not my story. I'm still battling this on a daily basis. So that's why I often urge caution around the word survivor. I think the concept of surviving long COVID is very real, but there are just a lot of patients out there who don't feel like they've fully survived the illness yet.

BROOKE GLADSTONE Throughout the guide that you wrote, you invite journalists to, quote, consider patients as experts. So what is the importance of centering patients as experts in media coverage?

FIONA LOWENSTEIN Many long COVID patients have had a more intimate view of this disease for longer than pretty much anyone else in the world, because we were the only people monitoring our symptoms. Most of our doctors were actually too overwhelmed to be in regular touch with us. Most of them also were not aware that COVID could cause long term symptoms. And so it was us as individuals that were kind of tracking what was happening in our body from day to day. The other thing that is important to keep in mind is that patient leaders have emerged, patient advocates, patient researchers. They did one of the first surveys on long term symptoms back in May of 2020. They've been cited by the NIH. There are patients on the NIH advisory board. There was a really good story recently by Betsy, Ladyzhets that went in-depth on the NIH, his research into long COVID, interviewing patient researchers and interviewing patients who are advisors and basically got to the fact that the research is not moving along in the way that it should be. And there are some pretty significant potential errors that are going to be made. So if we don't talk to the patient leaders who are in the rooms for those discussions. We're missing at least half of the story.

BROOKE GLADSTONE So how has long COVID coverage evolved over the last two and a half years? Now that it's existence seems to be generally accepted? Is the coverage okay?

FIONA LOWENSTEIN The coverage has definitely improved a lot. I think the biggest issue that we're dealing with right now is that long COVID coverage is still often siloed. It's kind of a footnote to the story or its own story, but it's rarely mentioned within these larger stories about the future of the pandemic, the return to, quote unquote, normal, or even questions about pandemic mitigation measures. Ed Yong is the reporter who has done a lot of coverage on long COVID. And so his pieces in the Atlantic in the summer of 2020 really helped to shift a lot of journalists attention toward this issue. One thing he'll do is even when he's writing about a topic that seems unrelated to long COVID, like the grief that many Americans are experiencing, having lost loved ones to the illness or the attrition of health care workers, he still usually includes at least a sentence or two about long COVID. In the case of health care workers, some of them have quit because they have long COVID. In the case of people grieving COVID deaths, many of those people themselves have long COVID. That's something that I would love to see more of.

BROOKE GLADSTONE There are estimates that the future coverage of COVID is going to be about long COVID, principally because of the economic impact.

FIONA LOWENSTEIN I certainly hope that's what we'll see. But I think a lot of people really don't understand the impact that long COVID has had on the economy in the workforce. Katie Bach did an excellent analysis for the Brookings Institute. And she says this is a conservative estimate that 1.6 million Americans may be out of work due to long COVID.

BROOKE GLADSTONE So what are the consequences of spotty long COVID coverage? The one that I know you're very concerned about that I'm really interested in is what happens once therapies become available to deal with long COVID.

FIONA LOWENSTEIN Yeah, I'm really glad you asked about that. So in the process of writing this guide on media coverage, I came across this really interesting paper called The Color of AIDS, an analysis of newspaper coverage of HIV AIDS in the U.S. from 1992 to 2007. It's authored by Robin Stevens and Shawnika J Hull. There was a decline and shift in media coverage of HIV AIDS in the United States around the same time that there was an increase in HIV rates among black Americans and rates among black Americans surpassed those among white Americans. This also correlated with the emergence of treatment for HIV. But who gets access to treatment? There are a lot of barriers to accessing health care in this country. So I have that same concern about long COVID. I'm worried that once promising treatments do emerge, the media might take that as a cue to stop covering the issue. But we can't stop covering the issue then. Firstly, because there are going to be people who have been sick for many years by that point, we don't know that these treatments are going to be equally effective for everyone. We're going to want to make sure that even if the mostly white patients who have been speaking online about their experience start to say that they're getting better and they found a treatment that we're still investigating, who else might have long COVID, who might not be aware of the treatments available? And to zoom out a little further. We need to document what's going on for history sake. You had an excellent show recently with Laura Spinney talking about how long COVID is not necessarily unprecedented. Then there have been other disease outbreaks that have resulted in long term illness. And those stories, we're digging those up right now to try and understand what's going on. If future generations deal with disease outbreaks and pandemics don't have to search as hard to find the stories of the long haulers who survived this pandemic, that will make them obviously feel less alone. But it will also help us make sure that they and the people who are supporting them and treating them and urging policy on their behalf have the information to know that that's not unprecedented either.

BROOKE GLADSTONE Fiona, thank you very much.

FIONA LOWENSTEIN Thank you so much for having me and for covering this really important topic.

BROOKE GLADSTONE Fiona Lowenstein is the founder of Body Politic, a global network of COVID patients and editor of the forthcoming book The Long COVID Survival Guide. Coming up, monkey pox. Not just for monkeys anymore. Actually, it never was. This is On the Media.