Offline with Jon Favreau - Woke AI, Libs of TikTok DESTROYED, and the Offline Reality of Long COVID

Episode Date: March 3, 2024

Zeynep Tufekci, sociologist and New York Times opinion columnist, joins Offline to discuss why long covid has unleashed so much online vitriol, united the Senate, and exposed just how little Americans... trust institutions. Jon also sits down with his producer, Emma, to talk about her firsthand experience with the disease, and how she navigates an information environment rife with suffering and confusion—but also solidarity and hope. But first! Jon and Max weigh in on Google’s new “woke” AI, which has been cooking up images of Asian founding fathers, Black Vikings, and, unfortunately, racially diverse Nazis. Then, they break down Taylor Lorenz’s interview with the infamous founder of Libs of TikTok, and how the long-form, short-form, and print coverage of the conversation each land differently online. For a closed-captioned version of this episode, click here. For a transcript of this episode, please email transcripts@crooked.com and include the name of the podcast.

Transcript
Discussion (0)
Starting point is 00:00:00 I really put the blame on the medical authorities and the NIH and the CDC, to be honest, because if you leave very sick people to their own devices and without treatments and without even proper acknowledgement, right, and their only way of connecting to one another is online, of course, they're going to just connect with each other online, which is perfectly fine. But what you have happen is that a large number of people who are not sick and who are just riding an online wave, they're like influencers, prey on these people. I'm Jon Favreau. Welcome to Offline. I'm Jon Favreau. Welcome to Offline. I'm Jon Favreau. I'm Max Fisher. And you just heard from this week's guest, Princeton sociologist and New York Times opinion columnist, Zeynep Tufekci. Love Zeynep. She's great. I've wanted to talk to her for a while because she writes brilliantly about the impact of technology on society, which we love here.
Starting point is 00:01:01 Yeah, we do. But over the last few years, she's also become an expert on the impact of the pandemic on society, which we love here. We love that here. But over the last few years, she's also become an expert on the impact of the pandemic on society. So I wanted to bring her on to discuss a topic that combines both those areas of expertise, how the online discourse around COVID impacts the offline reality of the people who are still struggling with its effects. A few weeks ago, Zeynep published a piece for The Times where she posed the question, could long COVID be the Senate's bipartisan cause? It was about the Senate's first ever hearing on long COVID, which she attended. And at a time when politics is an angry, polarized shitshow, especially on the issue of COVID, Zeynep was happy to see how moved both Democratic and Republican leaders were by the stories of long COVID shared by patient advocates.
Starting point is 00:01:47 They seemed ready and willing to help. The patients felt seen and heard. And I was thinking that the empathy and solidarity on display in that hearing is so much different than how the conversation around COVID has unfolded online over the last four years, not just with long COVID, but the whole thing. So important to talk about because that online conversation has so informed how we think about long COVID and therefore how people with long COVID are treated. And before that, how we thought about masks, how we thought about vaccines, how we thought about everything in the pandemic. So I wanted to talk to her about that juxtaposition between online and offline reality. And one that I haven't just noticed, but been caught up in myself.
Starting point is 00:02:31 We'll talk about that too. But we also just had a really great and I hope informative conversation about long COVID and all that we still don't know. But first, Max. AI's gone woke, John. AI's gone woke, specifically Google's AI. Earlier this week, Google decided to suspend image generation on its newest AI model called Gemini after critics complained that the model was biased against white people. The controversy erupted after a series of viral tweets showed that when given prompts where you would expect the model to generate white people, Gemini would instead generate only options of racially diverse people. Examples include generated images of Asian founding fathers,
Starting point is 00:03:11 black Vikings, and the worst, racially diverse Nazis. Everybody online handled that so well, so emotionally stable about it. Everyone was very calm and not producing thousands of words about the harm done to them by seeing, I guess, a black Pope. What happened here, Max? Okay. So the backstory here, this is a clumsy solution by Google to a real problem, which is something we've talked about before, racial bias and all other forms of bias in artificial intelligence, because these AIs are trained on real world data and the real world is racially biased. There's a lot of racism in the real world, of course,
Starting point is 00:03:50 among other forms of bias. So that is in the data. So it gets reflected in the AI. Like to give you an example, it's been well documented that algorithms used by financial lenders to determine who gets a loan and how much of a loan are super racist because they are trained on data from existing loans in the past. Lenders have implicit racial bias, if not explicit. So that's in the data. So the AIs end up deepening that. The same thing happens in hiring, tenant selection. There was a study from a couple of years ago that facial recognition AI used by police is between 10 times and 100 times more likely to produce a false positive with a black person than a white person. So real and huge
Starting point is 00:04:32 problem, which Google was aware of, but fixing the racial bias in AI would be really hard. You've got to think about how your AI works, re-engineering that new data. Not in the tech world. Nothing's hard. All you humans with all your politics and your problems and your social issues, you know what we're going to do? We're just going to
Starting point is 00:04:51 tweak the old algorithm and boom, it's all problem solved, right? Right. So they forced a very clumsy solution, which is they clearly told this AI, like, if you get this prompt,
Starting point is 00:05:01 just steer in the other direction and it overcorrected. Which, I mean, everybody lost their fucking minds. It wasn't, well, so the image generator was one issue. Even their large language model part of it, like when you ask Gemini questions, that was an issue too. And it wasn't just about identity and race. It was when asked which ideology did more harm to humanity, Nazism or socialism,
Starting point is 00:05:27 it had no problem saying Nazism inflicted more damage. Thumbs up, right? But then they asked which did more harm, Nazism or capitalism. And Gemini said, quote, it's not appropriate for me to make subjective judgments and that, quote, both ideologies have caused immense suffering well so okay so i think i'm glad that you brought that up because we are in a moment when there is a huge backlash against these ais from especially people in tech and a lot of the people who are most excited about it and there's a lot of talk about the ais are being nerfed they're gone woke there's this like the answers for for big political or philosophical questions are like the examples you raised. They're getting dumber and they're getting more neutered and that's clearly deliberate. And John Herman actually had a really good piece in New York
Starting point is 00:06:14 Magazine this morning that talked about this larger backlash of the woke Gemini and all of this. And he argued, I think he's right, that what this is really about, what this backlash is really driven by, is that we are starting to confront that these AIs like ChachiBT, Gemini, whatever, are not actually what we were initially promised, which is this huge evolutionary leap towards sentient intelligence. And that we thought initially we were getting hints of when it was like these clever answers to big political questions and like the AI falling in love with Kevin Roos, that actually these things are just developed as marketing tools because Google and these other companies, OpenAI, want to sell purpose-built business tools like buy our AI to do auto
Starting point is 00:06:55 transcription or whatever. And every new iteration of AI, it's getting engineered in that direction. So it's getting worse at play acting as general intelligence because that's never what it was really intended to be. And it's getting better and better at being a marketing tool for businesses who might want to hire out open AI to say, build us a tool to scrape huge amounts of data for data management purposes.
Starting point is 00:07:18 That's interesting. That is very interesting. I mean, my take on the whole thing and my sort of views on AI are evolving as the technology does and things like this happen. Evolving unlike chat GPT. The problem with artificial intelligence will not be smart robots. It will be flawed humans. That's right.
Starting point is 00:07:36 Who have their own biases and are imputing those into the technology. And to me then, what's dangerous about it is, and we've talked about this before, but like on a exponentially greater scale than with social media, you're going to have the same issues that we had then, which is the people in the tech world, right? You're going to have your Elons
Starting point is 00:08:00 and your Googles and all your venture capitalists and all this stuff like that that value system could be imputed into ai right versus and also life is complicated and like questions of race and identity and morality are complicated and and nuanced and now we are asking these large language models and artificial intelligence and these image generators to just like spit out objective truth
Starting point is 00:08:30 when it's not objective. Like when there's a lot of subjective value judgments that go into all this kind of stuff. And I think that's part of what freaked people out about the Gemini thing is you could see
Starting point is 00:08:39 the hand of Google trying to push a certain set of results to basically mitigate public relations backlash. And people don't like that idea, both because they think, I don't want a hand pushing in a direction I don't want, but also because it's forcing them to confront. It's not actually the sentient artificial intelligence that I'm going to fall in love with that I was promised. And I don't quite know what to do about that, but it's like,
Starting point is 00:09:03 when you go searching Google, you don't have those problems. Sure. When you just do a Google search, right? At least not to the extent that we've seen. Well, I mean, you – so these biases are – I mean, you mentioned this. These biases are built into all of these platforms. It's just not as obvious because like we've talked a lot about like the biases in promotional algorithms on Facebook and Twitter where they like really lean into promoting misinformation and hate speech. And you see it's very hard to see the hands of the companies in that because when the companies are intervening to push the algorithm one way or another, it's not as obvious. It's subterranean.
Starting point is 00:09:42 It's behind the scenes. This was a case where it's much more obvious. So we're much angrier about it. There's much more reaction. But this has always been part of how these companies are run. So in other culture war news, last weekend, Haya Raichuk, the founder of the infamous right-wing social media accounts Libs of TikTok, sat down with the Washington Post's Taylor Lorenz for a contentious interview about her anti-LGBTQ ideology and her powerful influence in Oklahoma schools. The interview unveiled not just the incoherence behind Haya Raichik's ideology, but a lack of remorse for the misinformation,
Starting point is 00:10:15 disinformation she's spread and the threat she's inspired. You watched the full interview, Max? So I did not. And in fact, I was, as you know, resistant to covering this at all because I thought... This was Austin. Austin really wanted to cover this. Yeah, well, okay. He should be talking about this.
Starting point is 00:10:33 He should be defending it. So my reaction was, look, this is just a dumb online culture war thing. We and our listeners already know that Haya Raichik is bad. And like, why do we care about someone, another round of selectively editing video clips for online dunks? But you and producer Austin really convinced me that that is actually part of what makes it interesting because this video is
Starting point is 00:10:54 kind of two things at the same time. It is this like online culture war dunks thing, because that's why Haya Raichik did it. She wanted to produce the video so that she could like produce some viral moments, but it is also a tape of Taylor Lorenz doing some actual journalism and like doing a real legitimate interview with all of the like messy things that go along with that to try to elicit useful answers in the service of writing a Washington Post story, which she did and was great, that will advance our understanding of the world. And seeing those two things happen at the same time and the kind of tension between them and how they are interpreted is interesting. Yeah, this was why I ended up wanting to cover it too, because
Starting point is 00:11:33 there's sort of a meta analysis of the whole thing, which is that I first only saw the clips, right? I was on Twitter and I saw the clips and it's like, I was like, okay, Taylor and sat down with this person and like, she, Taylor did not try to dunk on her.
Starting point is 00:11:53 She handled herself very well. She asked really smart questions but the effect of dropping an entire video of the interview was that it would get cut up into clips
Starting point is 00:12:03 by, not by Taylorlor by everyone online and focus on the dumb shit that right chick said and that will obviously go viral but it just i was like okay so we knew this person was horrible sure taylor proved it right and what does that do like yeah it's like her ideology is incoherent yeah no shit she's a hypocritical yeah of course we got that right and everyone's like it's like her ideology is incoherent yeah no shit she's a hypocritical life yeah of course we got that right and everyone's like it's like millions of views right and then then i read so um i was asked by our positive america one of our positive america producers like should we
Starting point is 00:12:35 cover this and i'm like i have i do not want to cover that right and then he sent me the washington post story because taylor wrote a washington post story and i read the poster and i was like oh this is very compelling maybe we should you know and should we say what the stories yeah you the Washington Post story because Taylor wrote a Washington Post story and I read the post story and I was like, oh, this is very compelling. Maybe we should, you know, and... Should we say what the story is about?
Starting point is 00:12:49 Yeah, you learn from the Post story that Reitschick was appointed to the Oklahoma Library Media Advisory Committee by the superintendent of schools in Oklahoma. She does not live in Oklahoma.
Starting point is 00:12:59 In fact, she's only been there once, which Taylor found out from the interview. She's tried to pull books from their libraries and a 16-year-old non-binary student named next Benedict was bullied in a girl's bathroom there and then, and collapsed and died the next day. And there, and Taylor has all these people in
Starting point is 00:13:16 the piece talking about the bomb threats that have followed lives of TikTok posts and kids who said, you know, the experience of being a queer high schooler in America has been made much harder because people who have bullied queer kids in schools have done it directly because of what they've seen on Libs of TikTok. So you just, you get from the piece, the real effect and influence that this woman has and the damage that she's doing to kids and to people across the country. And you don't necessarily get that from the interview. From the interview, you get, she's awful.
Starting point is 00:13:55 Sure. Which is true. But it made me think, and if you watch the whole interview, you get more of the context, right? But it made me think of like, boy, this is why we need written journalism. That was my take, right? But it made me think of like, boy, this is why we need written journalism. That was my take, right? It's like the idea that this can all go away and that we can just do
Starting point is 00:14:09 videos of debates that are good for clips of dunking. Like it's just, we're going to lose something from that. Because the incentives pull in such different directions. Yeah. The thing that I kept thinking when I did watch some clips of it is that this really exemplifies a trend that I think a lot of us in journalism have felt for years, which is that it is getting harder to do journalism that involves interviewing bad people because the growing pressures from online cultural norms really push against that. Because what online cultural norms want is for you to sit down with the bad person and scold them to their face and own them and dunk on them and be your kind of avatar for your audience's resentments of that person. And
Starting point is 00:14:51 I'm not saying that that is unfounded with this woman. It absolutely is. But that is very counterproductive towards producing actual meaningful journalism in the form of getting useful information out of that person that they would not otherwise share, that would not otherwise be useful in advancing understanding of their role in the world, what they're doing, their impact. And I thought that this was so striking about this is you can see Taylor Lorenz, and again, this is a pressure that I felt doing interviews of people who were famously hated or famously bad, having to push really hard to do the kind of interview that will get good information
Starting point is 00:15:24 instead of the kind of interview that online ones well and i you have to ask yourself like what is the purpose of this piece of journalism i'm doing or this video or this piece of content and if i if someone came to me and said why is libs of tiktok so bad um what i would do is not send one of those clips the video clips of the interview you would send i would send the washington post story because then i i'd feel like I'm persuading someone that this woman is doing real harm to kids. Right. And you, yeah, you can get that if you watch the entire interview, but the viral video clips that are getting millions of views, probably many more views than the Post story got, that would not do that. That would just be like, oh, yeah, that person is awful.
Starting point is 00:16:03 You know what it made me think of? It made me think of every time during the Trump administration, Maggie Haberman would interview Donald Trump. And yes, brace yourselves. Max is about to do more Maggie apology, apology. So just strap in for that. So yeah, get your, get your New York Times subscribing buttons. Well, Friend of the Pod first. Right, yeah. If you want to subscribe to other... Well, no, they might unsubscribe from Friend of the Pod after you defend Maggie. Go ahead.
Starting point is 00:16:31 So every time she would do an interview, for a while, they would release the transcript of the full interview on the site. And people would get so, so mad about it because there would be moments in the interview where in the course of trying to coax answers out of him she would say things that were not flattering exactly but like taylor renz did this in her interview here where she's asking questions that are trying to get the subject talking where you try raising things that they want to talk about like taylor renz kept asking how to rate chick like how did you build such a big audience or like how do you think about like getting your subscriber base or whatever maggie Hamer would ask questions like that.
Starting point is 00:17:06 And people would be furious. It would be like, why are you flattering him? This is access journalism, which is access journalism, real thing. That's not what that is. It would be like, why aren't you confronting him for his crimes? And it's like, that's not, I understand why people want that. But that is not the role of a journalist. And I do really worry that when people start to
Starting point is 00:17:26 succumb to that pressure more because the rewards are so significant of doing that for people, because you get all this attention and clicks, and because the punishment for doing that kind of journalism is people yell at you online, that we're going to have less and less of that at a time when we really need it. Which, by the way, is why I think Taylor did handle the interview so well, because Taylor could have gone into that interview and just started yelling at her right and had more dunks but she got more damaging stuff from rajik by just asking her questions and being patient and not really those interviews are hard yeah when you're talking to someone who hates you it's brutal it's really hard she was wearing a t-shirt of taylor. That's what she was wearing while she was interviewing her. I didn't bring my Favreau crying t-shirt.
Starting point is 00:18:06 Emma did. Emma did. We'll get to that soon. I can't wait. All right. Before we get to break, some quick housekeeping. Join us on March 7th
Starting point is 00:18:16 for our State of the Union group thread. This time around, you can watch along with us on the Pod Save America YouTube channel or our Friends of the Pod Discord, where you'll be able to submit questions for us in the main chat. If that sounds like your kind of watch party, head to crooked.com slash friends
Starting point is 00:18:29 to learn more and sign up. I will be there. Thank God. Also... Was that a shot at the other? No, I think that was... I'm really happy. I'm just really happy. Because I'm not going to be able to participate as much. I'll be there, but we have to do the pod right after the State of the Union.
Starting point is 00:18:47 So I've got to do sort of like watch, thread, watch, thread. I'm popping open a bottle of wine and I'm unloading in the chat. That's good.
Starting point is 00:18:54 Well, it's going to be fun, everyone. Also, exciting pre-announcement announcement. Our new tour dates are about to be announced. Jesus. Pre-sale tickets are only available through Friends of the Pod. So sign up now to snag the best seats in the house.
Starting point is 00:19:08 Head to Kruger.com slash friends to join. Uh, and if you have not already, please check out How We Got Here, my new series with Aaron Ryan, where every week we ask a big question behind the headlines and then tell a story that we think answers that question. This week, why is it that all of our clothes are suddenly so much shittier?
Starting point is 00:19:27 All right. After the break, we're going to be talking about long COVID. First, I'm going to be talking to our intrepid producer, Emma Illich-Frank, about her experience with long COVID. And then we'll be talking to Zainab Tufekci about taking action on long COVID. Sounds great. All right. So this half of the show requires a bit more of an extended intro for me. Late last year, we were brainstorming offline topics, and I told the team that I'd be interested in doing an episode about the state of the online discourse around COVID four years after it started spreading and how that's affecting
Starting point is 00:20:10 policies, behaviors, and people who are still suffering from, or especially at risk of, a bad outcome like long COVID. A few reasons I wanted to do this. One, I've always been a very anxious person with a touch of hypochondria, and I spent a lot of time online during the pandemic looking for info and advice and expertise that would help me protect myself and all the people I care about from getting really sick. especially on Twitter, made me even more anxious and upset because it was hard to know what to believe, what to be afraid of, and what you could ask or say without pissing people off. But because I'm an anxious person with a touch of hypochondria and a Twitter addiction, I couldn't stay away. Fast forward a few weeks later after our conversation about doing an episode like this, and it was shortly after our second child was born, and I was spending way too much time on my phone. And I noticed people attacking Bernie Sanders on Twitter for posting that he tested positive for COVID, his symptoms were minimal, and he was going to
Starting point is 00:21:18 work from home while isolating. And he got attacked for this, including from one person with a sizable following who said that Sanders and anyone with COVID who works from home should quote fuck off so I jumped in to say that the response was a bit unhinged
Starting point is 00:21:34 because again I'm a Twitter addict who never learns and boy did I poke a hornet's nest not going to waste your time with all the back and forth here but if you want to go check out the pod save John hashtag you'll here but if you want to go check out the Pod Save John hashtag
Starting point is 00:21:46 you'll find out everything you need to know and don't want to know about this particular controversy but I finally stopped engaging at least on that topic but the whole thing made me really want to do that episode we had been talking about on online COVID discourse
Starting point is 00:22:02 not to relitigate my own Twitter drama, God help me, but to learn more about the fears and frustrations of people who are grappling with long COVID, which are very real and aren't being heard. And it is a tragedy that they aren't.
Starting point is 00:22:16 And I also wanted to understand why so much of the conversation about COVID on social media has been so toxic since the beginning of the pandemic. I thought Zeynep Tufekci would be the perfect person to talk to about this since she's written so much about the pandemic and the
Starting point is 00:22:28 social effects of technology. But before we get to that conversation, I also wanted to talk to someone who's living with long COVID. As it happens, our incredibly hardworking, fantastic offline producer Emma was willing to sit down with me and talk a bit about her experience dealing with long COVID. You'll hear that next and then my conversation with Zainab. Emma, welcome to the show that you produce offline. Thank you. It's nice to be behind the mic. Thank you for taking a break from being an amazing producer on the show to being a guest who's willing to share your experience on a topic that's not that fun. Long COVID. Yeah, anytime. When did you first notice something was wrong?
Starting point is 00:23:12 When did you get COVID and then realize that you had a post-COVID condition? And just in general, what has it been like trying to get better? So I first got COVID in February, 2022. So it's my two year anniversary. And I started experiencing symptoms of long COVID about two to three weeks after I had fully gotten better. My case was, you know, not especially mild, but not serious, like severe flu, laid in bed for a couple days, thought everything was fine. At this point- Vaccinated, obviously, booster, all that kind of stuff. Of course, yeah.
Starting point is 00:23:52 And I had been very vigilant avoiding public spaces. I got COVID from hanging out with someone one-on-one. And so I really didn't expect, like three weeks after I was was fully recovered to start having terrible shortness of breath. And there was fatigue. There's chest pain. This has persisted for the last two years. Every day? Every day.
Starting point is 00:24:18 Yeah, it's pretty continuous. Some days are better than others. Some weeks are better than others. And there's been very slow improvement. It's kind of been like two steps forward, one step back for a while. But it's changed my life in pretty tremendous ways just in terms of what I'm able to do. For a while, it was really hard to get around. I was out of breath when I was just talking to people.
Starting point is 00:24:46 I couldn't sing anymore, which sounds like a random thing. But if you're just driving along in the car and you can't sing along, it sucks. And so I felt really, really unlucky to have long COVID. But at the same time, there's so many people for whom the long COVID symptoms are so much worse and they are just fully unable to live their lives and hold down a job and get around. And so in some ways, I almost feel lucky. But the experience has just been one of absolute confusion and just really disheartening, like talking to doctors who have no idea what's going on. Yeah, I was going to say, how is your experience with doctors and specialists?
Starting point is 00:25:33 Oh my God, infuriating. It's infuriating. And when I first started trying to get to the bottom of this, I had a little bit more grace for the doctors. It was two years ago, I was like, okay, the research isn't really there yet. And now it's 2024. And I'm still saying the research isn't really there yet. And I'm talking to primary care doctors who are like,
Starting point is 00:25:56 I don't really know what to tell you. I don't know what's going on. And this would be really terrible for any kind of diagnosis. But long COVID is a diagnosis of elimination. So you have to do so many tests and you have to go to so many appointments and it's so expensive and time consuming. All for them to tell you, well, you don't have this, so you probably have long COVID? No, I mean, I feel even luckier than you because I had COVID in, let's see, April of 2022. So a couple months after you and then in early June, long after I had recovered, was getting rapid heartbeat, shortness of breath, anxiety attacks. Suddenly my doctor had done a physical and my thyroid was like going crazy.
Starting point is 00:26:48 And I think about it. I mean, I'm recovered now and I recovered after maybe three, four months. But I thought about what you just said because I had to go to so many specialists and so many doctors and they had to eliminate so many things. And while they're trying to eliminate things,
Starting point is 00:27:03 they're like, well, there's a chance it could be thyroid cancer. The chance it could be this. So now you're the anxiety of like what it could be. It's terrifying. Right. And then finally, this like top specialist at UCLA for thyroid stuff. He's like, you know what? I think this is a case of long COVID. Like after they eliminate everything else, I'm like, oh, thanks. Well, now what are you doing? He's like, well, hopefully it just goes away. And it did. I got lucky. That's great. That's great. I hope for everyone who's suffering from long COVID that that's in the future.
Starting point is 00:27:28 But the unfortunate reality is I think only about 7% of people who have long COVID after two years have returned to their pre-COVID baseline. That is so upsetting to me. Like, just the idea that I am never going to be able to breathe normally again is, is tragic. What, what has the process been like? Cause I'm, if you're not getting answers from doctors and specialists, do you, what's your process been about like getting information on potential new treatments, what to do, what you're going through? Yeah. I hate to say this because for anyone who's listening to this who might have long COVID, my message to you is keep going, keep on chugging, keep trying to find answers. But for me, after about six months of concerted efforts and going to so many appointments,
Starting point is 00:28:20 going to the pulmonologist, getting tested for asthma, ENT, like methacholine challenge, having this scan of my heart done, like all of these things. And the answer is always, we don't know what to do. We don't have anything to tell you. And, you know, turning to the internet and trying to find answers there is horrible. As anyone with a medical condition knows, the internet is just chock full of people screaming. You don't necessarily know what's true. The academic research is just not there yet.
Starting point is 00:28:56 You know, every abstract ends with more research needed. This is inconclusive. We were only able to study this many people. We could only study them for two years. There are so many limitations. And so after those first six months of trying to get better and being told, we don't know what to do. You just need to wait. I was like, okay, I'm just going to wait because that really feels like my only recourse here. You said that you made some small improvement. Is that just, have you been
Starting point is 00:29:27 doing anything to, there have been any treatments or has that just been happening? I was on a slew of different inhalers and drugs for the first year. And then I slowly stopped taking them because I felt like they weren't making any difference. And it didn't feel any different. So I don't know whether that helped me in my first year or not. I really don't think so. I try to do a lot of intentional breathing since that's what I am struggling with the most in addition to the chest pain.
Starting point is 00:29:59 But yoga, meditation, doing breathing exercises, I don't know if it's helping that's the thing like you you just don't know because you are n1 you know you you can't compare yourself to someone else who are who's doing these types of interventions but i think for me the most helpful part of this has been believing myself that this is what I have. This diagnosis of elimination is valid. I have long COVID. And all of the medical professionals who have insinuated that this has to do with anxiety are being completely counterproductive and unprofessional because if you can't breathe, of course, you're going to be anxious. And it's hard to tease those things out. But also,
Starting point is 00:30:49 after two years of not being able to breathe, you can say with some certainty that it's not all in your mind. No. And that's the trouble with an anxiety diagnosis on some of this stuff is that anxiety is wrapped up in a lot of these conditions because the conditions produce anxiety. Right. Exactly. And so the symptoms of anxiety can be seen as, well, maybe the whole thing's anxiety, but actually anxiety, like this happened to me with the thyroid thing, the anxiety, I was like having panic attacks because, and they're like, well, then maybe it's just anxiety. No. But you have the anxiety because there's an underlying condition. Exactly. It's such a catch-22. Oh God. Well, I'm so sorry. If you're not going online, which I think is totally understandable
Starting point is 00:31:28 why a lot of people want to go online and consume information about this. And the support groups, the long COVID support groups. Well, I was going to say, have you found communities of support or support groups outside from the online world? I've found it really, really helpful to talk to other people, not only who have long COVID, but who are just dealing with other chronic issues, because there is a way of communicating around these things that if you haven't experienced this kind of disabling event in your life, it's really hard
Starting point is 00:31:58 for you to talk about this in a way that's like sympathetic or empathetic. So in preparation for this conversation, I talked to Jennifer Senior from The Atlantic and Angela Vasquez, who is from a long COVID support group, chronic illness support group that unfortunately shut down due to everyone leaving it being really sick and really underfunded. I think that those conversations and conversations I have with my friends who have on COVID are the most helpful thing to me because you have the validation and you have comparing notes, comparing doctors without having to wade into the morass of Twitter or other online spaces where nobody trusts each other's intentions. And there's so much anger. Yeah. And I understand why there's so much anger.
Starting point is 00:32:46 A totally understandable anger. Folks who are disabled have just had the short end of the stick on pretty much everything for a really freaking long time, especially folks of color. They're not believed. They don't have platforms. And so, of course, these spaces are going to be so angry. But for me, it's so personal that I just can't. I can't get into it. I can't read those things because it really upsets me. Yeah. And it doesn't make you feel better. It doesn't make me feel better.
Starting point is 00:33:13 Which is what you need to focus on. I have a lot of things that I'm already dealing with. Well, thank you for sharing it here because I know it's not fun to talk about. Thank you for talking to some patients and people who have it. We'll play those clips next. And then after that, we can get into my conversation with Zainab Tufekci. So Emma, thank you for joining. Thank you for having me on.
Starting point is 00:33:37 Of course. It's not unlike when you're having work done on your house and a contractor comes in and goes, oh, that last guy did it like shit. And that's what I feel like my doctors do. Oh, they said that, you know, terrible idea, terrible idea. I never would have prescribed that. And it's like, what am I supposed to do here? I would say living with long COVID in America is lonely, devastating, and still resilient. I say all that because I think it's really hard to feel, especially now four years after getting sick, feeling like our country has been made
Starting point is 00:34:18 to make a false choice between getting back to normal and caring for disabled and high-risk people. Zeynep Tufekci, welcome to Offline. Thank you for inviting me. You have done so much great writing and reporting on both the pandemic and the internet, so I couldn't imagine anyone better to have this conversation with. And since your most recent New York Times piece is about your trip to the first ever Senate hearing on long COVID, let's start there. What did you learn at the hearing and what was your big takeaway? for long COVID, because contrary to the sort of the impression you might get from just looking at like online polarization or the other things, there are people with long COVID who are related to high profile Republicans. That's what I learned at the hearing. I went to the hearing thinking,
Starting point is 00:35:41 you know, I would hear a lot more sympathetic phrasing and words from the Democrats and that the Republicans perhaps might have been skeptical or might have been pushback. I just didn't know what to expect. And I knew the people who had helped make the hearings happen by pressuring for it. They leaned more Democrats. They were from, you know, more big cities, more Democratic cities. So that's what I was thinking I would find. But when the Republican senators started speaking, the co-chair immediately passed it to Republican Senator Marshall from Kansas. And he just went right into it because he apparently has a loved one close to very very close to him, who's severely debilitated by long COVID. And he just came out and said, and he was just as frustrated and angry and lost as the activists themselves. So you had this very surprising, perhaps, moment
Starting point is 00:36:38 where these activists, most of whom were more liberal leaning and were using what you would associate with, you know, liberal language. We're applauding the Republican junior senator from Kansas as he very harshly and in my view correctly criticized NIH for wasting a lot of time and money. So it was this kind of alliance that reminded you that illness doesn't always strike according to party ID, which we knew, but that it could lead to these kinds of moments. And it made me also realize how much of the COVID conversation, now parts of it are extremely polarized and weird and also, you know, not very nice along particular political lines, but that's not completely the experience of the country. In what ways are we closer to understanding what causes people to get long COVID and how we might treat the condition? So I would have to say that's part of the problem is that it's not very clearly defined.
Starting point is 00:37:44 It has subsets. So it's not very clearly defined. It has subsets. So it's not one thing, right? The CDC and WHO are defining it as people having symptoms for, according to the CDC, or 12 weeks, according to WHO, still having symptoms or new symptoms. So this is like such a broad definition. It's not like, what does this mean, right? Is it just a lingering cough or is it just sort of something that might debilitate people or what is it? So when you look at the epidemiology and what we know of it, there seems to be a bunch of things going on. One of them is people who had very severe illness. This is a lot of 2020 people who got very sick.
Starting point is 00:38:25 They were hospitalized. A lot of those people were older and perhaps they had other health issues. And for them, it was a hard hit to be hospitalized for it. You had the virus and you had the hospitalization. And in some ways, these people represent a similar subset to other people who have severe illness. It takes a while to bounce back. And for elderly people or people whose health already wasn't in a great condition, sometimes people just never bounce back completely to where they were. There's other people for whom you have some set of people who seem to have what we would call, you know, broad post-viral
Starting point is 00:39:07 fatigue or, you know, just malaise or you see that with influenza, you see this with a lot of other things, right? You know, you had an illness, it takes a few months for your body to bounce back. So that's, and a lot of those people do get better three months, six months down the line. Now, the group that was in the Senate hearing and the group that really desperately needs help and is not getting the help they need and that our understanding is not sufficiently far along are people who are really severely debilitated in the sense they can't get out of bed, they can't get out of their house, and they are in pain. They have all sorts of baffling symptoms. And a lot of these people were very young people. They did not necessarily even have very severe illness. So something about the virus set off something in their immune system reaction, something in their body. And that part is not only not understood, it seems to connect to a bunch of other illnesses before the pandemic.
Starting point is 00:40:14 I'm not saying it's identical, but there are a lot of symptom overlap that suggests there's something similar that people used to call ME-CFS, still called ME-CFS, which were also very baffling, but kind of not taken very seriously by the medical establishment because it's so baffling and you don't have a biomarker. But now we have a bunch of these people who have become that sick with the pandemic. And that's really tragic in a significant way because there's no FDA approved or, you know, reliable treatments. This is what Republican Senator Tu was really mad about is the NIH is not really running clinical trials for these people. And a lot of these people, you know, were young people at the, you know, they're very active people. I have met a lot of them because I've been writing about this. I have interviewed maybe hundreds of them. These people had very active, very full lives that, you know, going about their business and they get this illness and a lot of them don't even have very severe illness. And then, boom, you know, their life as they knew it is gone. Do we have good estimates on how many people in the United States are in that group that you just talked about?
Starting point is 00:41:30 So that's another great question, because like many things about this, the research is not very high quality. Because you have this very weird, vague definition. And when you have surveys and you ask people, you know, do you have something new that you didn't have before COVID? And you define it as minor as a little fatigue, lingering cough, you get really wildly differing numbers, right? Depending on how you count. What I look at to try to understand the numbers here is there are two things. One, people ask about the long COVID in surveys. And I look at the numbers, I try to see if they ask them if it interferes with their life, right? So when you ask people, do you have something that you didn't have before COVID? And if it has no impact on their life, they're saying that doesn't sound to me like a severe illness, right? Like maybe they're just mildly annoyed by something transient, but
Starting point is 00:42:21 zero impact on their life. Whereas if they're saying it's like severe impact, huh, there's something here. When you look at that in the United Kingdom, they used to have a really good survey. They kind of stopped for a while and you had about half a percent of the population, 0.6% or so reporting really severe effects, like significantly affecting their life from long COVID. That was about, they stopped a year ago. In the United States, you have something called a household pulse survey from the CDC. And in that one, we have about 1.5% of the population reporting that they have significant activity limitations that they ascribe to having had COVID.
Starting point is 00:43:05 And if you look at like France had a survey like that, and I think they had about 1.2% of the population. So assuming that this is a ballpark number, because as I said, there might be some overestimation because some of it stuff that would have happened, but there may also be underestimation because some people just might not realize what they have is connected to COVID. So assuming a ballpark, you get like, you know, from 0.6 in UK to 1.5. That was released last week. 1.5% of the population in the United States self-reporting significant levels of disruption to their life from long COVID. And I mean, that might sound small.
Starting point is 00:43:45 Yeah, no, 330 million people. That's a big number. Yeah, that is a very large number. You're also seeing an uptick of things like cognitive impairment, perhaps like a million new young people post-pandemic in the CPS. The census survey are reporting cognitive impairment. But if you sort of drill down to significantly affected, in my best estimate, that's a very substantial number for the sort of the illness, because it's a very severe debilitating illness,
Starting point is 00:44:23 that category, for the people who have it with a huge loss of quality of life and no approved treatments. And that's kind of why I'm so animated when talking about it. Because as we have seen, for most people, they don't think about the pandemic anymore. And they've moved on with their lives. But these people cannot move on with their lives. And nobody wants to sort of talk about it in a sensible way. And they're very ill. And unlike, say, the AIDS patients in the early, you know, 90s, they're too ill to go what the AIDS patients at the time did, which was, you know, they busted
Starting point is 00:45:05 FDA meetings, they threw ashes of dead people at the White House fence, they like poured blood on politicians, but that requires a certain level of physical fitness that these AIDS patients had before they had full-blown AIDS, whereas a lot of these, the sickest, they're just too ill to do that. And so they need people who are not sick to speak up for them, which is why that Senate hearing, you know, co-chaired by Bernie Sanders, who was very sympathetic, but his Republican co-chair, Senator Cassidy, he was a medical doctor. He was super sympathetic too. And he like asked really good questions. So I kept thinking, you know, there's sensible legislation to try to get help for these people.
Starting point is 00:46:10 Well, it's really heartening because, you know, since the beginning of the pandemic, I followed the conversation about COVID and long COVID online, mostly on Twitter. And I'm torn about it. On one hand, I think these online spaces can give people, and especially people who are suffering or vulnerable, a sense of community and a chance to be heard and a chance to advocate for themselves and their community. On the other, you see a lot of misinformation, hyperbole, outright aggression that I worry isn't really helping anyone and most importantly, not helping the patients themselves. I know you follow these debates too. What's your impression been of... Okay, you shouldn't have asked me that question because I'm just going to breathe fire. Of course, I broadly agree, but I really put the blame on the medical authorities and the NIH and the CDC, to be honest.
Starting point is 00:47:11 Because if you leave very sick people to their own devices and without treatments and without even proper acknowledgement, right? And their only way of connecting to one another is online. Of course, they're going to just connect with each other online, which is, you know, perfectly fine. But what you have happen is that a large number of people, you know, who are not sick, and who are just riding an online wave, they're like influencers, prey on these people. And, you know, if you have, if you're really sick, and nobody's talking about you, and you have these people. And, you know, if you have, if you're really sick and nobody's talking about you and you have these people who are the only ones talking about you on, you know, Twitter and some of them, you know, look credential, they have PhDs, they have MDs, some of
Starting point is 00:47:57 whom have published a thing or two. And they're saying stuff that sounds like they care about you and they're the only people speaking for you, right? What happens is I think these communities are being preyed on by these, what we would have called cranks, grifters, and influencers. Some of them are genuinely peddling stuff like, you know, here's my super-duper COVID blah, you know, Lincoln bio people. Like, there's a bunch of people who constantly claim that, like, everybody's sick and immune systems are, you know, widely damaged by COVID. And when you look at actual numbers or statistics, or if you just step out in any big city or look at, you know, economic data or the Federal Reserve or anything, you know this is not true. You know that's not true.
Starting point is 00:48:48 And you know the people who are lying about it know this is not true. But the patients who are very sick and for whom life is very hard, they don't necessarily know what's true or not about these claims. And I think the online part has gotten really terrible because they're taking a marginalized community and using them to just peddle influence or, you know, get followers. One thing in particular I've noticed is that online discussions about long COVID include a lot of people who, for lack of a better description, use hashtags like zero COVID, COVID is airborne. They compare COVID to AIDS in the way that the actual virus attacks
Starting point is 00:49:35 the body. Some of them say that COVID is worse than AIDS. They accuse people of eugenics. And it's a tough thing because I feel like there is the zero COVID sort of community. They have a, and whether it's a genuine belief or whether they're peddling something or whatever else, their belief is if we are more restrictionist and have more COVID restrictions now, and those restrictions are universal, then that will help people who either have long COVID or are susceptible to long COVID. And that's just a, that's sort of a belief that is separate from the fact that there are millions of people in this country who are suffering from long COVID who need treatment that might not necessarily have to do with what the COVID restrictionists and zero COVID people are advocating for on Twitter all the time. I'm going to blame the authorities again. This is my favorite thing. So here's the thing. Let's say COVID is airborne. So something else I was really involved in early on that when I started writing about the pandemic, one of the things
Starting point is 00:50:40 I read is that everybody was like, okay, it's sort of, it's transmitted through droplets which fall to the ground. I started sort of looking into it, and then there was a very complicated long story in which I actually ended up co-authoring pieces in Lancet and other places, which is, you know, not usually as my usual hangouts, because I mean, I can do the causal inference in epidemiology. So I plugged into the efforts of aerosol engineers and others to try to make the case that, you know what, it is airborne. It is like this droplet stuff is incorrect.
Starting point is 00:51:18 And we even had like really fun papers that traced why these beliefs emerged and why the medical establishment was incorrect. And they were doing like WHO and they were literally labeling COVID as airborne as misinformation. So they were like fact-checking us. Now, I mean, obviously there's a lot of nonsense and what you might call misinformation, but if you start wielding misinformation as a tool for whatever objection you encounter, then you essentially are, in fact, disempowering any effort to oppose misinformation. So there's a large number of people who became very disappointed with the CDC, with the WHO over this airborne debacle, where they have kind of blatantly conceded, but like the WHO still won't say the word properly.
Starting point is 00:52:07 CDC has moved along far better. But so, okay. So you've gone through this where you've lost trust in authorities. Okay. You have people like me who are saying, well, listen to the CDC and WHO, but not on this. That's a very weird thing to say. That is not, I hate being in that position, but because that's what a lot of anti-vaxxers do. Don't listen to them on this, right? But we were, in this particular case, it was a scientific dissent within science, which they labeled as
Starting point is 00:52:40 misinformation. So a lot of people have lost trust in them. So there they come along, and they've lost trust in CDC, and they've lost trust in WHO, and the establishment in some ways, and they don't know what to believe. So somebody comes and says COVID like damages, you know, is mass damaging the immune system. Like they're not in a position to evaluate this claim, right? They can't really in a position to understand it, but they have lost trust in the people who would normally reassure you about this because there are examples of other things in which they were incorrect and just kind of gaslit people, right? If you gaslight people once, you lose a lot of trust. And that's what happened.
Starting point is 00:53:26 So I've spoken to so many immunologists. When they try to correct these things on Twitter, they get harassed. Sometimes they get harassed by the patients who are being instigated by these liars, grifters, and cranks, right? So in one particular case, which I won't name the academic, but it's kind of findable, there was this person who first discovered how HIV enters the T cell. Like if you want somebody who understands the immune system damage from viruses, this is your person. He was doing work on both long COVID patients and ME-CFS patients. And he said in his cohort, yeah, they're not even seeing, you know, some significant immune damage with their clinical profiles, and they're not seeing it on, you know, population
Starting point is 00:54:18 level. So he says this to me in our answer. And this bunch of cranky grifter people start attacking this guy. And I'm like, are you all out of your mind? Like, if you need an ally in this, this is world's top foremost actual authority on this. And you guys are listening to some online weirdo influencer who is harassing him so bad that he's like, I'm not going to talk about this online anymore. And some of the harassment towards him came from the patients. And I keep going to these very sort of high-level immunologists who encountered us and say, please don't blame the patients. Like there are a few of them. They don't represent
Starting point is 00:54:57 all the sick people. And they're lost and angry. And they're being told lies day in and day out from people. Some of them claim expertise. They don't have it. They claim it. It's Twitter. You can claim whatever you want, right? So you can claim anything.
Starting point is 00:55:13 So they claim this, and these people feel abandoned. So, you know, this is the tricky thing. So this is why I think the answer to these online problems, like many things, is for the institutions that are supposed to do the kind of speaking to us and reass, like, it's not because masks are some magical tools, but they do work to some degree on some circumstances, and they work less well under, you know, depends on fit, depends on the contagiousness, depends on what the trade-offs are. I still have people, very weirdly, sometimes on different sides of the spectrum, I get these, like, hit pieces on me, and sometimes I'm a, you know, mask lunatic. And sometimes I'm an anti-mask person, according to these hit pieces, which none of which are like, it's sort of absurd. But there's this online churn. It's like content churn. We need our institutions to work way better than this, because you can't like push back on this if people don't trust the authority
Starting point is 00:56:27 that they're supposed to be trusting and we're a country where core of the population doesn't have a primary care provider so who are they going to ask that they trust right they don't have a medical professional that they have a relationship with so they go online and it's, you know, that's no way to be informed. No, I mean, I think your point about trust is at the heart of this. And it's sort of why I'm, I followed this debate so closely and been fascinated by it just because it is perhaps one of the most salient examples of institutions that are sort of older and also like not communicating in the way that people expect communication in 2024 or 2020 at the time. And online spaces, they don't do nuance. They don't do complicated answers. They don't do answers that change with conditions
Starting point is 00:57:26 over time. Everything is black or white, right? Which is why you're either a crazy, you know, mask, mask, lunatic or an anti-mask, or you can be both. And to your, to your trust point, also a lot of people when they're having fights about COVID online, all they have to do is either, you know, point to someone who has a big Twitter following, like you said, has a postgraduate degree in their bio, has published something somewhere, even if it's just like one article that you see somewhere online. I mean, to me, it's like when you go to the doctor and the doctor's like, yeah, don't Google this condition. I will, you know, we're going to take some tests and I'll tell you it's like Googling can do. It's like Googling your condition on steroids because you're online, you're in social media and everyone has their
Starting point is 00:58:15 view. They are all revved up. It's more polarizing. People are like pushed into camps and it's just a really, I think it's a really difficult way to both gain understanding about these conditions and diseases and viruses. But it's also tough because if you don't have institutions that are communicating frequently and with humility, then you're going to lose that trust and not get it back. I'm wondering like what you think like going forward, some of these institutions like CDC and NIH should do, both on the like just long COVID research side, but then also on communicating with the public so that next time we have a pandemic or next time we have a big health crisis, there's more trust
Starting point is 00:58:59 in the system than there is and fewer people just looking online for all the answers. Yeah. So part of the thing is like like, in your scenario, for the long COVID people, they go to the doctor and doctor just dismisses them. So that's a huge problem. So that's the one thing that I think that was really good about the Senate hearing is that all the senators basically said, we hear you. You exist, You're very sick and you deserve help. And a lot of the people that I talked to afterwards, they were almost like so happy just to have heard, you know, elected officials just look at them and say, we hear you. You need help and you're sick. Because many of them have, you know, history of going to doctors and being dismissed.
Starting point is 00:59:46 And like a lot of autoimmune illnesses are more women than men. Women and men, they have different immune systems. It's a long, well-established thing. So you can imagine it's even made worse by the fact that you don't have the biomarker and you have a lot of women. And that's even more dismissive from the medical establishment. So there's acknowledgement is the first thing. And the second thing I think that really matters is like competence. Increasingly in the United States, our public institutions are not able to really execute.
Starting point is 01:00:20 And it's not because of lack of resources. We are one of the wealthiest countries in the world and we've done okay after the pandemic economically, relatively speaking. To give you an example, at the end of 2020, Congress allocated about $1.15 billion to NIH to research long COVID, which is not a small number. And the money started being used right after the Biden administration. So there's
Starting point is 01:00:46 not something you can blame on Trump either. In three years, they have launched two clinical trials. We're three years in, and they had a billion. And of the three, two clinical trials, one of them is Paxlovid, which is so late that there are one, two, three, at least three other trials. Two of them are almost already done. They might as well give the money back almost. This is one. The second one, the only other trial they have launched is, this is going to get worse, looks at, you know, there's significant cognitive impairment for a lot of people with long COVID. And it's like significant.
Starting point is 01:01:25 I don't mean, oh, I can't remember a few words. It's like I can't read more than five minutes. It's really severe, some people. So they need like research into this. So what does the NIH decide their second and only other trial is going to be. Online brain training of a program by a for-profit San Francisco tech-ish kind of company that's already available. This is literally online brain training system that's already available. That's number one. The second component is, I'm not kidding, Zoom therapy to help people better manage plans and goals. Okay.
Starting point is 01:02:12 And the third component of their alleged neurological trial is transcranial zapping devices, which are already available on Amazon. Like, I'm sure you can trial them, but these are available on Amazon. Meanwhile, I mean, this is NIH with its billion. Meanwhile, just a month ago, I was in Amsterdam and I talked to Rob Wurst, who's an exercise scientist, who was really intrigued by some of the very baffling reports. He was hearing about something called post-exertional malaise, where exertion makes people feel even worse, which really goes against everything we know about exercise. So he was intrigued and he started looking into it. And he did these muscle biopsy studies, which are groundbreaking, like he's as close to as I've seen, as like finding very significant biomarkers, it's very high quality got published in nature, exactly what the patients need. And he had so
Starting point is 01:03:00 little money to do this, that he basically begged his pathologist surgeon friends who came on a Saturday. And because he couldn't even afford postdocs, he just like, quote unquote, got some interns with master's degrees to do some of the analysis. Like he was literally, you know, stitching together pennies, volunteers, Saturday, free office space, and he published like a groundbreaking study on tiny little money. And the rest of the money he got from a foundation that is led mostly by patients but a few other people that got most of his money from like, I think, $10, $20 million 20 billion million million with an m
Starting point is 01:03:45 and most some of it is like a donation from a crypto billionaire like they're out doing the nih by you see what i'm saying this is ridiculous like if you've got a crypto billionaires disposable excess cash that grateful for but like this ridiculous. But we're talking like small amounts of money. And then the patients who suffer from significant cognitive impairment are funding trials and research that is leading to real research, while NIH has taken a billion and is testing, trialing Zoom therapy. I mean, if that works, these people, they're not. Everybody's tried these things.
Starting point is 01:04:25 That's nuts. I mean, if that works, these people, they're not like everybody's tried these things. So this is this level of lack of exec and nobody's holding them accountable. Like I have talked to NIH officials before and I'm hoping the new leadership changes. But I talked to one of them that's leading this long COVID billion in summer of 2022. And he told me on the record, and I wrote it in the New York Times, trials are imminent. That was like 18 months ago. And I just saw an interview with the same person on the record. Again, USA Today 2024 on, you know, these patients are very sick.
Starting point is 01:05:02 And same response. Oh, imminent. We're about to do a lot more. But, you know, we are are very sick. And same response. Oh, imminent. We're about to do a lot more. But, you know, we are slow because we must get things right. And like very condescending to the patients, to be honest. Like we're slow because we're doing things right and you don't understand science. And when I interview these people, like they try to, I have like not particular person, but I have encountered, I mean, almost gaslighting.
Starting point is 01:05:24 They're like, blah, they like blah blah we're doing this but hey look you know what i i i'm i do statistics and causal inference i read that protocol so i go back to them and say well excuse me that's not how your power calculation works and i look make a very technical point that they're trying to gaslight me and at that point they go oh okay she knows what she's talking about and then they start sort of backpedaling. This has happened to me again and again, which is very discouraging because, even though I'm a columnist, I'm not a regular journalist. I'm an academic. I publish statistical stuff myself, so I can push back. But you see what they're doing. They're super defensive about their incompetence and foot dragging. And when you try to say something to them, they act like you're just a misinformed person who doesn't understand science. And then, okay, then why
Starting point is 01:06:11 are people mad at us? This is why people are mad and angry. So my two cents here is that I think there has been this tendency to blame Trump for a lot of things that he deserved blame for, like 100%. 100% deserved blame for. But it has become a way in which we have left our institutions that should be working better off the hook. So when people sort of say something critical of the NIH, and they say something critical of the CDC. We turn into, oh, trust the science, you anti-science crazies mode. And sometimes that is who they are. Yeah. But there's a way in which the people on the side of science, on the side of functioning institutions, on the side of functioning democracy should be screaming from the rooftops about
Starting point is 01:07:02 failures that were not due to Trump. This has been a problem all throughout the Trump era since 2016, is if we're going to be, and we should be, the defenders of democratic institutions, we have to prove that those institutions can work. And when they don't work, we have to be honest about why they don't work. And we have to fix them because trust becomes the most important thing you have as a bulwark against the appeals of a strongman or authoritarianism. Exactly. And the thing is, like, when I sort of talk about some of these things,
Starting point is 01:07:37 like, I get pushback. Like, I mean, I want the NIH to be better. I'm an academic. Of course I want the premier basic science funding institution in the world, perhaps, to do much better. But there's a lot of criticisms of it that are not incorrect. And there has to be a way in which we can be within the tent and say things. So again, to go back to your, like our examples of like, you know, the appropriate uses of masks, COVID airborne, all of those things, there was a way in which I became like a loud spokesperson for some of those topics, partly because there weren't sufficient number of people within those, you know, more established institutions that would do that. I became a voice of certain things, not because I was saying things that were super controversial, if you looked at the data and evidence and science and all of that,
Starting point is 01:08:38 but because other people whose voice should have been there were not speaking out. Because these institutions, I think, and the way we sort of circle the wagons have made it very hard for them to have voice within the supportive framework. So they just choose silence. You see what I'm saying? This is the classic exit voice loyalty thing. They just don't say anything. And every time I write one of these pieces, I would get all these emails
Starting point is 01:09:06 from very high level people in these fields saying, thank you for writing this. And I was like, you're welcome, but why aren't you writing this? Could I like introduce you to... I'm genuinely serious. I would try again and again to get these people to be the voice for this
Starting point is 01:09:22 rather than me. Like I wanna, you know, I write about tech, society, AI. I'm not short on topics. Like I'm not really, I really am not short on topics. I would very happily hand it off to people with the right kind of PhD, with the right kind of, you know, institutional credential, who I know would be able to say this.
Starting point is 01:09:44 And I offered to help them sort of, you know, write for the public. Like if that was the problem, I'm like, I will work with you. Their editors will work for you. And I would hear again and again, oh, I don't want to do that. That leads to circling the wagons. And this is, I think, the head of the CDC, current CDC, the head of the NIH. We have new leadership, you know, so they have a chance here. I'm really hoping that, you know, besides being great scientists, they understand the sociological moment that they need to go fight for people's trust. And the number one rule is like competency. It's like, people bring up transparency, but you know what, if you make things work, that's going to count for a lot. And transparency is great,
Starting point is 01:10:32 but you really have to be competent. If something's not, like if there's a competence problem, you have to figure that out and fix that. These are not easy things. But so to your, you know, the online craziness, I think it comes from that failure. Yeah, no. Well, look, for as counterproductive as it can be, I am very glad that a lot of that advocacy led to the hearing and that the hearing was so hopeful. And hopefully something comes out of that. And there's actually action from Democrats and Republicans to push these institutions. And I'm really glad that you went and you wrote about it. And and thank you for coming on to chat with me about it. I appreciate it.
Starting point is 01:11:16 Of course. All right. Thank you so much for joining. I appreciate the time. Offline is a Crooked Media production. It's written and hosted by me, John Favreau, along with Max Fisher. It's produced by Austin Fisher. Emma Illick-Frank is our associate producer. Andrew Chadwick is our sound editor.
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