Ed Yong on the Pandemic’s Legacy on Science Research and Reporting
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From KQED. From KQED in San Francisco, I'm Alexis Madrigal. During the pandemic, former Atlantic writer Ed Yong became the go-to source for analysis and insight about how COVID was moving across the world and this country specifically. In 2021, he won a Pulitzer Prize for that work, which often was about, quote, the massive gulf between what you want the world to be and what you see happening around you.

As part of our series looking at the legacy of the pandemic five years on, we talked to Yong about how COVID changed our relationship with news, institutions, and each other. It's all coming up next, right after this news. Welcome to Forum. I'm Alexis Madrigal.

If you go back to 2018 and read Ed Yong's Atlantic feature story from then, The Next Plague is Coming, Is America Ready?, you'll be hit with a certain wooziness, something like a flashback inside a flashback.

Young asked Anthony Fauci, then largely known inside public health circles, about all the different presidents he'd served under. And Trump? Quote, I haven't had any interaction with him yet, Fauci tells Young. But in fairness, there hasn't been a situation. The article continues, there surely will be, though. At some point, a new virus will emerge to test Trump's mettle. What happens then?

Well, we know now. 1.2 million Americans died with the highest per capita death rate of any rich country and more than five times the death rate as countries that performed well like South Korea.

But it's not only that. The pandemic feels like it broke something in this country, or perhaps many things. Societal, educational, scientific, informational. And it's not entirely clear what might help us put the pieces back together again.

Welcome back to Forum, Ed Young. Hello. Yeah. I really do. I do hate to do this because I think it's difficult for people to put themselves back into the headspace of that early time in COVID. Early... Before it's even really...

Traveling around the United States. But the fascinating thing to me, looking back and at the time, was that the U.S. was seen as a leader in infectious disease monitoring. Was the American preparation for a pandemic at that point a mirage? Was it just Trump or was there actually something baked into the nature of our society or governance structures that made us

open for a pandemic to really hit hard here? Yeah, that's a great question. It really is the question, I think. So, you know, before the pandemic happened,

There was an index created called the Global Health Security Index, which looked at dozens of different factors that were thought to be important for measuring a country's pandemic preparedness and measures.

That index then ranked every country in the world according to how prepared they were. And the U.S. came out top. Number one. Number one. We're number one. And that's sort of hilarious in hindsight, but that was the feeling, right? The feeling was very much no country is perfect.

prepared, but of the ways you could be not prepared, the US was the best. It was the least unprepared. It had a lot of things going for it. And I think what

is clear now. Like, as you said, we had probably the worst pandemic performance of any industrialized country. Even like many developed countries, I think, did much, much better. And that was something that I think took everyone by surprise, including in like very learned preparedness circles. Like most people maybe did not know that a pandemic was coming, but certainly there was a community of people who were thinking about this like all the time.

And I think that they thought the US would do much, much better than it actually did. And I think that the discrepancy between what that index said and what actually happened in reality can be explained because we prioritize not necessarily the wrong things, but very, very partial things. So I think we put a huge emphasis on...

like biomedical infrastructure, so vaccine capacity, drug manufacturing capacity. And what we completely ignored and what the index really doesn't index very well are all of the social vulnerabilities that make a society incredibly susceptible to a novel virus. So that concludes everything from like things that you don't think of as being like preparedness, like paid sick leave.

Like the ability of someone who is sick to control whether they come into work or not without risking their livelihood to trust. Right. Do do people trust each other and do they trust their government when the government says get vaccinated? Like all of these things are, I think,

absolutely crucial to how a pandemic actually manifests in a country whether it goes from something that will pass through or like a disaster whose repercussions will be felt for years to come and I think

We like we the preparedness community, me writing that 2018 article, society at large. We just didn't see that. You know, there's been some discussion in recent times about.

the relative performance of states, you know, California versus Florida or whatever. And people noting that there sort of was a convergence among kind of the performance of a lot of these places over time. What do you think that says? Do you think it says that because I think there's multiple interpretations of that. One would be that, oh, well, it didn't really matter that states like California tried harder than, you know, than Florida to sort of prevent the spread of the virus.

The other interpretation might be, though, that you just can't do it on a state by state basis because we have completely open borders inside the country. Like a state is not a biophysical entity. It's just a political one. Yeah, I think that that second interpretation is correct. Like there's, you know, the the massive nature of the U.S. and the distributed nature of the U.S. means that at the very start, the pandemic is obviously going to be incredibly patchwork.

You know, it's going to hit different places in different ways. Subtle variations in the nature of those communities and their responses are going to make a huge difference. But, like, states can't fight this on their own, right? For the very, very simple reason that infectious diseases spread. They move from place to place and from person to person. And so this always needs to be addressed differently.

as a collective. The greater the collective, the more success we have. You know, this applies internationally too, but it certainly applies within the confines of a country. Like, you know, any given state can do the best possible job, but it's still going to be pummeled if everyone else is failing. And, you know, the...

Regardless of like the interstate differences, there are so many aspects to American life that I think transcend those differences and that make us really vulnerable, right? So the nature of the healthcare system is a very obvious one. The fact that you have to pay for your healthcare and the fact that many people don't have it. You know, the fact that I think throughout the country, we have all of these people

congregate settings that were incredibly vulnerable and that were poorly resourced. And that's everything from like nursing homes to prisons. You know, we have like the most severe carceral state in the industrialized world. And that is a problem that transcends these like smaller differences. You know, it's why if you look at

if you compare the U.S. to any other wealthy nation, we did badly. Actually, one of my... To sort of go back to your earlier question, one of my...

One of the papers that came out during the pandemic that I think is most instructive is one that compares, that looks at the number of quote unquote like missing Americans. So that's the ones who in any given year would still be alive if the US had the mortality rates of the average industrialized Western nation. So not even the best, just like the average. That number was enormous in 2019 before the pandemic.

And it grew bigger during COVID substantially. But it speaks to like these long lasting historical vulnerabilities in how we've structured our society, how we care for sick people, how we think about health care that made us vulnerable. And I think would have made us vulnerable regardless like who was in charge. It's not to like let Trump off the hook. That was clearly a problem. But like.

The weaknesses were in the rootstock, right? Mm-hmm. Mm-hmm. It also seems to me that as a result of a lot of those factors, as well as just sort of the early botching of so many things in the pandemic, that the only tool we really had even by the end of March was these kind of stay-at-home orders to slow the spread of the disease. And that really...

I think people have really forgotten why that was. And I was reminded reading one of your stories that, you know, one study modeling the disease had two million dead Americans by the end of summer 2020. So talk a little bit about why it was that all we kind of had left was stay-at-home orders.

Yeah, right. I'm glad you asked this because I think that now, five years on, the narrative and the main discourse is really about, did we go too far? And many people feel yes, right? But I think

The thing that is completely forgotten in all of this is in March 2020, we had no f***ing idea where this thing was. Like, let alone any of the other pieces about, like, what the actual fatality rates were, like how quickly it spread. We had no idea where the virus was, who was getting sick, because there was...

And as you were particularly well know, there was no testing. We were flying completely blind and I cannot stress enough

How important that was and how much that's forgotten. Like now in an era where like I have a stockpile of like rapid tests in my bathroom cupboard, no such things existed. Like we just didn't know. And when you don't know and when you have like the potential for catastrophe, you have to do something.

And I think that's why those orders came into place. Now, you know, you could with the benefit of hindsight, you could say, well, it's like ludicrous to put the orders in in like, say, a state where we just didn't have COVID. Right. In like a rural community that's looking around going, well, like no one I know is sick.

It feels like viscerally unfair and like wrong to do such an order. But again, we didn't know. We had no idea. And and right. So the other thing I want to say about stay at home orders, right, is.

Yeah. We fail when we expect them to solve the problem. What they are is a chance to give us time to put in the measures that will make things livable afterwards. We did none of that.

We're talking with science journalist and author Ed Yong, part of our series of shows looking at the impact of the pandemic five years on. He's based in Oakland now, we can claim him. Yong won the 2021 Pulitzer Prize for his writing in The Atlantic about the COVID-19 pandemic. Of course, also the author of An Immense World.

We want to hear from you. What do you remember from those early days? How have your attitudes towards public health evolved since the pandemic? You can give us a call. The number is 866-733-6786. Forum at kqed.org or find us on all the social media. I'm Alexis Madrigal. Back with more for Definitely Great. This episode is brought to you by State Farms.

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Welcome back to Forum. Alexis Madrigal here with journalist and author Ed Yong. Won the 2021 Pulitzer Prize for his writing about the COVID-19 pandemic.

We want to get to some of your calls and comments, you know, how your attitude or approach towards science or science reporting changed because of the pandemic. The number is 866-733-6786. Forum at kqed.org, Blue Sky, Instagram, etc. We are KQED Forum.

So, one of the things that I wanted to just focus on here for a minute is people may not know that before you were the Ed Yong, you were a science blogger. And there's often controversy among scientists inside the field, right? And I think you've always been someone who's been interested in kind of the reality of science and not its sort of idealization. Mm-hmm.

So what do you think the pandemic revealed about, you know, how people think about science versus the reality of how research is done? Yeah, I think that...

Like anyone who really understands how science works knows that it is not, as it is often caricatured, like a steady procession of facts, right? We use the terms, we use the word science and facts almost interchangeably, and that's not really the case. I see science as a stumbling, erratic, meandering march towards slightly reduced uncertainty. And that's...

that's really hard to deal with in the middle of a pandemic, an event that's unfolding very quickly where people want answers. And I think some of the biggest mistakes that were made in communicating the signs of the pandemic were around trying to offer certitude and

and actually trying to give people messaging that was designed to engineer a specific kind of behavior, right? Like to sort of reverse engineer from that, because firstly, you're not that smart. And also it's a lie, right? And when things change,

you look disingenuous at best. So like the early messaging around masking was a clear example of this, where I think a lot of people wanted masks to be preserved for healthcare workers. There weren't any, that's another thing that's been memory hold. And people didn't want like a run on masks. So the messaging became, don't wear masks.

But if you don't explain why you said that, then later when you say actually wear masks, you know, you look bad. I think that there is throughout my work on the pandemic, throughout the writing I did,

I tried to embrace the massive uncertainties that were present. I think it is a myth that people can't cope with that. But the choice is not ignore uncertainty falsely or just say, we don't know, full stop, neither of which is very satisfying. I think you can show people uncertainty

why we are uncertain, like why it's hard to get answers to any of these big questions, what things people might do to get answers and how long that might take. Like I tried to do this repeatedly because then it turns uncertainty from this like

nebulous cloud that hangs over our head in this kind of terrifying way to actually a thing that we know the boundaries of. You know, like, uncertainty is the size of this room. I don't know what's in it, but I know how big it is. And that helps. And I think, like, getting better at conveying those kinds of things

will, I think, make us better at communicating about the nature of science in a rapidly unfolding and uncertain crisis. Yeah, I've really wondered within the sort of public health communication and establishment

Right.

you know, change the way that they approach the next major infectious disease that hits the U.S. because it's the downsides of that form of communication are,

when a disease is big enough, important enough, large enough, became so clear. Yeah, I agree. And I agree. And I think, you know, that approach is a little paternalistic. You know, I think it works in very small, constrained events. And when you have something that's just going to last for years...

It's so much more important not to give people messaging, but to show them how to think about it, about the problem. Like what kinds of ways of thinking are going to be helpful? And this became a huge bugbear for me because I think when you think of misinformation in the context of COVID or anything else, the examples that people tend to think of are like,

if I was being really ungenerous, kind of trivia. You know, it's like...

someone saying hydroxychloroquine is going to cure your COVID, like that's misinformation and we need to combat it. And like, sure, I agree. But also like to me, the more insidious problem are entire frames of analysis that are counterproductive. Like, so one of them is like thinking about this purely in individualistic terms, right. As a problem for me. So, um, you know, when vaccines came out, um,

So many people from like the Biden administration to the New York Times repeatedly told us, like, what you need to do is to think about your own personal risk, which is now much lower. And if your risk is low, then the risk is low. And you should basically act as if like everything's fine. And yet we have like, you know,

new variants that are cascading through the population ever more quickly than before. We still have loads of immunocompromised people at risk. We still have loads of cases of long COVID. The collective problem is always more substantial and more dire than the individualistic problem. And if you ignore the former for only the latter, you come to entirely the wrong conclusions of firstly what you should do and then also what...

The nation should do. And I think that's actually much, much worse. Like in the long run, it's more detrimental to our collective fates. And it's just something that we don't think about. Yeah.

You know, the other thing I've been thinking a lot about is the overall kind of information environment, which feels like it has continued to degrade and degraded rapidly through the pandemic. You know, the kind of weaponization of...

And I do think that is the audience that most journalists implicitly imagine that we're working for. Yeah.

And I want to believe it exists. Do you think it still is out there? Is there this kind of mass of people who are, you know, just fundamentally trying to get their hands on how the world is working? I mean, yeah, I think both halves of what you said are completely true. Like, yes, we live in an incredibly polluted information ecosystem. You know, so one of the vulnerabilities that existed before COVID that we all talked about were like how terrible our, like,

our information environment is. We exist in all these social media platforms that amplify extreme information, often misinformation, and that corral us into these small echo chambers where we're only listening to what people in our immediate communities are saying. So it fragments us, it distorts our understanding of the world.

All of that is worse now, I think, than it was then. And yet, I think it is, I think that, you know, to your question of, is there a community of people who are like trying to make sense of the world? Like,

Yeah, I think that's all of us, actually. I think that we are all collectively trying to make sense of the world and we do it together. You know, my wife Liz is an expert in sense making, right? Like trying to weave meaning from chaos into...

And that is a thing that we do together, you know, over the dinner table. Like, Liz and I, in the start of the pandemic, went for daily walks around our neighborhood where we was trying to work out what's going on. And that's something that we are all doing. And that's something that I see the communities around me doing. Like, when we have, like, spokespeople for the administration telling us the pandemic is over, like, I see people, like, talking to each other and going, actually, that seems wrong to us, right? Like...

It's a thing that we all do. And I think it's just unfortunate that this act of collective sense-making...

constantly feels like swimming against the tide, right? Like we're constantly moving against top-down, more official sources of information. And, you know, that's the challenge. But I kind of feel like it's always been that way. You know, it's always been hard and it's always been something that we have to do together. Yeah.

I like that perspective. Let's bring in Kathleen in Martinez. Good morning. Thank you for being here. I had a concern early on with the pandemic with what health care was doing in terms of providers because they weren't accepting patients into hospitals or people into hospitals or into clinic appointments as usual. And so therefore, the facilities and providers weren't seeing many people.

But there also wasn't the outreach to their patient workload, you know, calling people and asking them how are they incorporating these guidelines into their families, how are they translating that information down so that the kids could understand it and their parents could understand it or whatever person needed to understand it. How are they working with their comorbidities and things like that? And so the providers were just absolutely silent and had no voice.

And I think that that led to one single voice having such prominence.

That it led to President Trump being able to speak so loudly and clearly about things that really didn't help at all. And the providers' distrust or the lack of... Prior to that, the patients generally had a very good relationship with their providers. And after that, I don't think patients have had the same kind of relationship at all. Kathleen, I appreciate it. And I think it definitely impacted that. And another part... Kathleen, let me take this one to Ed just so he can answer this piece. Thank you so much. I appreciate that perspective.

So I take that concern. It's not actually something that I've heard before, but I appreciate it. I do think that...

I extend a huge amount of grace towards healthcare workers, especially in that early phase of the pandemic. I think it is easy in retrospect to say that they could have done this or they should have done this. And yes, in theory, but I think we have to remember the conditions that many of them were facing in those early moments. So you are a healthcare worker. It is March or April of 2020.

you have no resources. If you are in New York, like you are, you have like body bags being loaded into like freezer trucks, right? You are seeing people dying everywhere. Like your ICUs are full, like your wards are full. You have no protective equipment. You might be using like garbage bags for gowns. You don't have masks. Yeah.

You are in constant fear that you are going to get sick, that you are going to bring this sickness back home to your families. You know, and... People living apart from their families or not, you know, all this kind of stuff. Right. Like, it was hell. And honestly, it did not get better for a long, long, long time. So, you know, I think we...

I'm not saying you're doing this, Kathleen, but I think in general, we forget that. And we forget what it was like. That phase when everyone was clapping and banging pots and pans for the healthcare workers went away very quickly. And their trauma of those moments did not. So I really want to encourage folks to remember what that was like and to just...

the fullest spirit of generosity to what healthcare workers were or were not doing during those crucial months. Yeah, it was a very... I think you're right that there is a... The trauma of those early months, the way that things that had seemed like realities were instead turned out to be

socially constructed ideas like you have to go to work or you have to go to school or like that, you know, that the that the U.S. is the most prepared for a pandemic of any country. Like all these things that we thought were facts turned out not to be. I think that people have not really wanted to face up to how scary that time was because then it also became boring and commonplace and

and all these other things. You know, it lost the sort of drama of a movie and became more just something people were grinding through, trying to get their kids to, like, do their work online and trying to do all that. You know, it became something that I think somehow obviously changed everything and that we don't want to ever think about again. Yeah, I agree. I think for a lot of people...

That period became very repetitive. So, you know, firstly, you forget things because like literally memory is gone for that period. Right. Exactly. And I think everyone is consumed by their own particular challenges. You know, I I I think that the journalists who were covering the pandemic in that time were.

And like public health folks, health care workers have a very, very different experience of it. You know, like like you say, I think a very common experience of that that first year of the pandemic was I'm so bored and like.

I would have killed to have been bored. You know, I can't imagine having been bored. And so for me, that whole period exists with this kind of crystalline clarity. You know, I remember...

The waxing and waning of the crisis over the weeks and months, I remember looking at graphs of case rates day in, day out. To me, it was constant flux and just this never-ending wash of horrors. It wasn't this sort of stultifying set of routines. And I think that...

You know, the fact that the boredom existed for a lot of people and the routines existed for a lot of people, it does help to sort of explain why we've forgotten so much about what it was like and why we made the choices that we did.

A couple of comments I want to get to here. You know, one person says, you know, I have real beef with the idea that California handled the pandemic better than other states. This is actually 20 year point said. Sure, we required social distancing measures and mask mandates, but we didn't backfill that with additional paid sick time for the working poor. Nor did we have a functional employment development department system to serve people who needed unemployment support the most.

we should really be looking at our state government's functionality rather than holding up California as a model. An excellent point. Yeah.

Dave writes, five years on, I've concluded that COVID won. We have an anti-vaxxer heading the Department of Health and Human Services. Half the country is ideologically opposed to the concept of masking to protect others. And measles is taking advantage of our collective stupidity as a nation. We have amazing technology to solve public health problems, but it is no match for a political system with cult dynamics. Grim. Yeah. Yeah. Yeah.

We're talking with science journalist and author Ed Yong. This is part of our series of shows looking at the impact of the pandemic five years on. Based in Oakland, Yong won the 2021 Pulitzer Prize for his writing in The Atlantic about the COVID-19 pandemic. He's also the author of some amazing books, including An Immense World, How Animal Senses Reveal the Hidden Realms Around Us.

We're going to get to more of your calls and comments in the next segment. You know, what lessons or behaviors from the pandemic have stayed with you and are applicable to your life today? And kind of what resources you rely on during the pandemic? You can give us a call. Number is 866-733-6786. That's 866-733-6786. Email us at forum at kqed.org. Blue Sky, Instagram. We're KQED Forum there, too. I'm Alexis Madrigal. Stay tuned for more right after the break.

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Welcome back to Forum. Alexis Madrigal here with Ed Yong, Pulitzer Prize-winning journalist and author. We're talking about, you know, five years after COVID. I'm going to take us back to a September 2020 article, one of kind of the key...

or pieces of analysis that helped me sense make around the pandemic, which was the idea that a wider pandemic will also be weirder. And you write, you know, when millions of people become infected, rare events become commonplace and phenomena that might typically have gone unnoticed suddenly became prominent. This creates a deceptive sense that the disease in question is stranger than most and has uprooted the world because there's something inherently odd about it.

Talk to me about that frame. Wider is weirder. Yeah. So this is just like a statistical phenomenon. The more people who experience a certain event, the more you have at the tails of it where the extreme weird stuff that's usually so rare that you would never see it.

suddenly appears in numbers in the dozens or in the hundreds or in the thousands even, you start seeing like weird symptoms that might fly under the radar in normal times. You see like comorbidities that you would never normally see. And I think when you have all of that and when you have people sharing all of that on social media or whatever, then you have this perspective that like this disease can do anything. But

Actually, a lot of what COVID did was what a lot of viruses do. We just don't usually see a new virus to which most people have no immunity spreading so quickly through this completely naive population. And, you know, so you very rapidly see, I think, like kind of like the full catalogue of what a respiratory virus can do.

But you see it in a way that makes you think like this particular virus is like, you know, is is extra special. And in in the main, it's not really. And I think that's that's the that's the whole core of the wider is we do think. Let's bring in Laurie in Oakland. Welcome.

Hi, thanks. First of all, I just want to thank Ed so much. He's one of the only people who's ever

I've been struggling with worsening long COVID since March of 2020. I'm homebound now, essentially, unless someone comes and picks me up and takes me to the park. It's destroyed my life.

The pandemic is not over. It's never been over. There's more than two million of us just in the state of California alone with long COVID. And most of my practitioners at Kaiser, for example, have no idea what long COVID is. And there's no treatment. And

I just want to keep repeating our gratitude to Ed for speaking up about Long COVID, for publicizing the patient-led research collaborative.

with Hannah Davis and Lisa McCorkle and all the great work that they've been doing, Voices in the Wilderness. And the only way that long COVID is ever going to end is if people stop hating masking and recognize that this is an airborne virus. It has always been an airborne virus. And the only way to

to protect from it is with full secure masks. But everybody hates them. Nobody will wear them. And so we keep spreading this airborne virus. We had even Fauci and Deborah Bier submitting last year that they had lied. They said we're really sorry to the American public that we invented this myth that we were ordered to

to create by the president at the time in 2020. Hey, Lori, you're kind of getting, getting a little scratch here. Thank you. Thanks so much for your, for your comment. I'm so sorry. Also, I'm sorry. Oh, I mean, Ed, you, you have talked to many, many people along COVID. I mean, I feel like you were the first on it because people kept contacting you. They're just like emailing you saying like, I'm having these, this set of symptoms and these things are happening. And,

It is just, I think for those of us who, you know, got COVID and recovered fully, didn't experience any of these symptoms, it's almost unfathomable that the same virus would have these, you know, wide-reaching effects. Just talk to me about, like, what your research and what talking to people has revealed. Yeah, okay. So, Laurie, I'm really sorry. Thank you for calling in. And I'm sorry to every long hauler who's listening to this right now. So...

For people who don't know, long COVID is a syndrome of possibly dozens or hundreds of symptoms that continue after an initial COVID infection for months and maybe even years as Laurie and others are experiencing. The syndrome can be extremely debilitating. People might be homebound. They might be bedbound.

The symptoms can include things that sound familiar to us because they take on everyday names, but are very different qualitatively. So a lot of people have fatigue. The fatigue of long COVID is not the fatigue that I get when I'm like stay up too late or jet lag.

it is a fatigue so crushing that daily activities may become impossible. Some people have a thing called post-exertional malaise or PEM, where you perform small bits of activity, like maybe just household chores, and then you crash for days or weeks where your symptoms get worse, where you just... Everything gets worse. People might have... When, you know...

fatigue is like your batteries are draining. PEM is like your batteries don't exist. You might have brain fog. Again, that conjures up the images of like, you know, I'm hungover and I can't think properly. It's not like that. It's, you know, your executive function, your ability to pay attention to details, to hold things in mind and to ignore distractions, just becomes shot. Like doing simple things like

reading a book and following the plot become really, really hard. So long COVID can be incredibly debilitating. It's so common that if you are listening to this, I guarantee you, you know someone with long COVID. You either explicitly know who they are or you don't because they might not have chosen not to tell you because one of the most common symptoms of this is that

People will tell you it doesn't exist. People will tell you that you are depressed, you are stressed, you're anxious, you're making it up, you're lazy. You will hear this from doctors who are meant to help you. You will hear this from your closest loved ones. It is like one of the most universal experiences of the COVID long hauler. And it is horrific. It can be worse. Like sometimes it can be worse than the physical suffering, like that kind of social dismissal.

And that pressure forces people to ignore their own suffering. Like the message that we get all the time for this and for illness in general is push through it. And if you push through and you have things like PEM, you will get worse, sometimes radically, maybe permanently so.

So people people are continually forced to like go to social events and pretend that they're okay or like go to work because they have no choice and they get worse like I run a monthly Birding club for long haulers in the Bay Area and I see these people like maybe once a month and they seem fine and

And I don't see them afterwards when they're not fine. Like the disease makes you invisible to the world and it makes your suffering invisible to the world, which I think adds to the dismissal that folks with long COVID face. You know,

Should long COVID change the way that we view kind of like the basic biology of like viral interactions? Yeah, absolutely. Long COVID is not new, right? So obviously long COVID specifically as the syndrome as a result of a COVID infection, you know, began in 2020 when COVID began. But like this pattern of illnesses is very,

very similar, if not indistinguishable from things that have long existed like ME/CFS, so that's myalgic encephalomyelitis or chronic fatigue syndrome. It's very similar to things like fibromyalgia and Ehlers-Danlos syndrome and all these things that I know know a lot about but I never heard of before I started reporting on any of this.

And that have been plaguing millions of people long before COVID existed and have experienced the same kind of physical debilitation and the same kind of social dismissal. Like one thing that many people with who are many long haulers I spoke to said to me was I just didn't believe a body could be this sick and not be dead because it's

I thought, I just assumed that, like, if this was a thing that millions of people were going through all the time, we would never stop talking about it. There would be research going towards it. There would be, like, clinics devoted to it. None of those things exist because all of these diseases are so completely overloaded.

They're overlooked because of sexism, because they disproportionately affect women, because of ableism, because they turn people into folks who can't live up to this hustle culture, this productivity culture that we have decided is okay as a society. And the last thing I'll say on this is you can find writing from people with ME-CFS who

in like March, February of 2020, who saw like the start of the pandemic when it was still confined to China and when it was starting to spread around the world and who said, this is going to lead to a mass disabling event. And

That when I started reporting on this in like the summer, most of the doctors and academics I knew had no idea that this was that long COVID was a thing or was a possibility. The fact that there is a patient group who saw all this coming and who have long been ignored should like humble everyone else. Yeah.

You know, Catherine writes in to say, first, I want to express my profound gratitude for Ed Yong's in-depth reporting on myalgic encephalomyelitis and chronic fatigue syndrome, that is ME-CFS, as you've heard. As someone who has had chronic fatigue syndrome for decades, I can attest that we as a community still feel largely unseen and our needs unaddressed. Due to the massive Trump funding cuts, I fear institutions that had finally begun to take ME-CFS seriously are now going to suspend research and treatment programs and

One question that I've had, and I think one reason why there is this kind of social stigma attached to it, as you've so well described, is the mechanisms still seem like they're missing, but we're also not putting in the research to figure out the mechanisms, right? I mean, obviously there's something very complicated going on in these kind of post-viral syndromes.

Yeah, right. And you can see this horrible cycle happening where the dismissal of the disease fuels more of itself. It's dismissed, so there's no research. So people look at the body of evidence, quote unquote, and say, well, it doesn't exist. And so there's no research, right? So it's like the lack of research fuels the lack of research. And the...

Yes, I think that...

Some centers that are devoted to this will shut down because of a lack of funding and I cannot really overstate how catastrophic that is because you can count the number of like You you can almost count the number of like doctors who truly have experience in treating ME/CFS on like hands and hands and feet, right? you know, it's

Losing any one of them is a huge blow and that is happening and there aren't enough already. I am at least encouraged by the rise of like.

private philanthropic funding going towards addressing like looking into these kinds of illnesses to a degree that is something that the community has always had to do you know it's always had to fund itself it's always had to push for its own recognition and I want to make clear that

There is a way, like, there are no treatments for long COVID yet. And yet, this community has...

been extraordinarily successful in my mind in advocating for itself. Like there is much wider recognition of long COVID as a problem that needs to be addressed. It is formally recognized by the WHO and well, I guess the CDC, but let's see how long that lasts, right? And that is the result of a group of people who

have no energy and who have brain fog, like pushing for their own rights at a time when pushing is massively costly to them. Like it is absolutely heroic work that I think many of us, because of the widespread prevalence of these kinds of post-viral symptoms, should be very, very grateful for. And this is often the story of

and, you know, widespread illnesses, right? Like, what is one of the most successful activist groups in US history? It was ACT UP, right? Like, a group of patients who were extremely marginalized and who completely changed the way we deal with HIV and AIDS. Disability rights movement, too, with polio. Right. Absolutely. Yeah. Yeah. You know, a few final comments from listeners. You know, a listener, there's...

There's apparently a great discussion going on over the Discord right now. One writes, I think essentially it is how we as individuals and as collective humanity deal with uncertainty. Uncertainty becomes a hotbed for theories and beliefs to spread. Vivian over there says, I feel like there was a period in late 2020 to 2021 where people were talking about how COVID would change how we handled illness, how it would inspire people to give and fight for paid sick leave. We're mastering flu seasons and so on.

Instead, children are dying of measles, of all things, because trust in vaccines has been so eroded. COVID itself has so many horrible effects, but the way it's affected how people approach health in general is also terrifying. And Casey on the Discord says, I'm more cynical than I was before.

I thought the mass loss of life would unify the country. Instead, we live in this era of snake oils and little bubbles of misinformation. I just spent a vacation around people who are obsessed with beef tallow, even in their sunscreen. They believe avoiding seed oils will prevent all ailments. My wife and I are scientists, but we can't engage in those conversations from that vantage point without trying to be extremely tactful. These ideas are tied to people's identities. The phrase, I do my own research, is the bane of my existence."

Yeah. Yes. So, yes. Like, everything that was said is true and I feel it in my bones. The only thing I'll say to it is, and yet...

All of you are having that discussion with each other on your Discord. The pandemic has changed how I think about the world. I did not know about the extent of post-viral chronic illnesses. I did not really know about ME/CFS. My posture towards that community is completely different.

The way I engage with my friends is different. I have immunocompromised loved ones who I see all the time and I still test every time I see them. I still wear masks in public when I do big speaking events.

Partly to show people that this isn't over and partly because I've learned that I really enjoyed not being sick. Like the pandemic has also completely radicalized me in many ways. It's shown me a lot of the cost of a lot of the inequities that I previously cared about. And now I can see like just exactly like you can just see all the lines, like how those inequities affect.

affect all of our health all the time. You know, we spend so many... The great mainstream media agencies of the world are so invested in telling stories of people making right word shifts because of COVID that

I feel like I've become so much more left because of all that. And we never hear from people like that. So I'm just saying there are many people who think the way you do and who are still changing their lives. And we are more prepared for the next pandemic, even if the world is not. And that is important. Yeah.

Noel on Discord writes, every time Ed Yong is on the radio or I read his articles, I feel better. Wish more people were better at communication around COVID. Ed Yong, thank you so much for joining us this morning. Thank you. I'm Alexis Madrigal. Stay tuned for another hour of Forum Ahead with Mina Kim.