S1: It's time for Midday Edition on KPBS. This month marks five years since the Covid pandemic shutdown. Today , we're talking about the questions researchers are still trying to answer and the impact of long Covid. I'm Jade Hindman with the conversations that keep you informed , inspired and engaged.
S2: There's still a significant number of deaths each week that we see with Covid.
S1: And even years after infection. What's the risk of living with long Covid ? We'll have answers ahead on Midday Edition. Last week marked five years since the World Health Organization declared Covid a global pandemic. The disease infected millions across the country , pushed the healthcare system to its limits , and continues to impact public health today. As we look back on five years since Covid began , we want to talk about the latest research in how we can use that knowledge moving forward. Doctor Eric Topol joins me. He is professor of medicine and executive vice president of the Scripps Research Translational Institute in La Jolla. Doctor Topol , it's always good to have you on.
S2: It's always good to be with you , Jade. Yeah.
S1: Yeah.
S2: There's millions of people that have had infected with long Covid who are still suffering. Obviously , there's a huge toll of deaths that are pushing 1.3 million Americans. Still , you know , no shortage of hospitalizations and deaths , but at least that's on a much lower level than we had seen previously. So the virus is here for the long haul. Um , and we haven't come up with a remedy at in any respect for long Covid , so we aren't well prepared for another pandemic. Having learned lessons we should have learned from Covid. So that's kind of the mixed reaction is we've made some progress. It's probably not going to be durable. We're probably going to see future waves of Covid as the virus continues to evolve. So , um , you know , there's a lull right now. People think we're done with it. No , we're not done with it. Mhm.
S1: Mhm.
S2: But , you know , one of the biggest mistakes was instead of thinking it was only in liquid droplets , um , that it actually was airborne , you couldn't see it. It would travel far greater than six feet. It , you know , it could be , uh , 100ft in the right environment. Uh , and also that , you know , masks , high quality masks were going to be essential. So that was missed. And that didn't help. Um , regarding the spread , we are on that now. We know that these respiratory viruses are airborne. And that's why these masks are still a critical defense mechanism. Another thing that we didn't get right was to push hard on a nasal vaccine , because had we done that , we we would have a couple of those likely by now that would be very effective to prevent infections. There we got the miscue that , you know , once the vaccines were so potent in the beginning and they were blocking infections. But unfortunately what we didn't know was that our ability to have durable immunity to the virus was not going to be the case , that it only lasts for six months or so , and that the virus was going to evolve to much more difficult , um , strains. So those two things together , uh , made it essential to have a nasal vaccine. And although there's some programs ongoing , we could have had that , you know , years ago , had we had we seen the the problem of not being able to block infections. That was already the handwriting was on the wall. Yeah.
S1: Yeah. Well , how has research of mRNA vaccines evolved ? Yes.
S2: Well that's extraordinary because mRNA vaccines had never gone to scale until the pandemic , but this way to carry a message into cells is be possible to across lots of infectious diseases , for cancer vaccines , for gene therapy to prevent autoimmune diseases , perhaps even neurodegenerative diseases. So the mRNA message inside of a nanoparticle package , which is the platform for these vaccines , we now know that overall , they're extraordinarily safe. We've learned ways that the safety can be enhanced , a highly effective , and we can bring that efficacy up higher. So this is a very important platform for the future. And that's why it's worrisome , because our government currently is considering blocking all research on mRNA vaccines , not just of course , for infectious diseases or Covid , but for everything. Wow.
S1: Wow. Well , and you know , as you just mentioned , I mean , yes , the Trump administration has been slashing funds for health research across the board , and that includes research on vaccine hesitancy , even.
S2: By taking away the grants about vaccine hesitancy , that's to try to understand why people don't get vaccines , where they could really benefit and what could be done to improve that. And obviously that's an anti-vaccine , anti-science action. But that's what we're seeing across the board. You know , we've seen with RFK Jr saying that the outbreak in Texas and New Mexico , which is very serious with two deaths , over 20 people hospitalized , that it's due to the vaccine , or it's can be remedied by cod liver oil or vitamin A. These are ridiculous statements , and he actually does not support that. Everyone should get vaccines , but leave it to personal choice. And these hedging things and coming up with these other unproven remedies , it reminds us , of course , during the pandemic of ivermectin and hydrochloride , hydroxychloroquine , hydroxychloroquine and other things that were never proven. So we're seeing a flashback to , um , you know , going backwards against science , against the evidence. And that's really sad.
S1:
S2: It's not having adequate personnel. And inevitably , you know , a lot of this gets done at the at the local and state level. So the tracking of infections , uh , whether it be , uh , flu or , or a bird flu , uh , you know , um , you know , Covid , all the things measles , all these things are , are compromised when we don't have adequate staff. So the trust , uh , is being undermined by the current , uh , HHS secretary because he's giving messages that are not backed up by science. And so that just that just kind of spills over to the people who can be trusted that have been working , um , in these government , public health agencies , not just CDC , but also , of course , NIH and FDA. So I don't know how this is going to settle out. I try to be optimistic that we're going to get back to a very more reasoned and reasonable state , but we're certainly not there right now. Mhm.
S1: Mhm. And you know , also the Trump administration recently suspended the free Covid test program. What are your thoughts on that. And and how the Covid response is changing. Yeah.
S2: Yeah. And that was incredibly dumb because they're they had tens of millions of tests that were ready to be given out free. So instead of giving them out free they're just discarding them. I mean , this is incredible. It's like denying that Covid exists. That doesn't work. We know that. And this these tests were were perfectly fine. And it doesn't cost much through the post office to send them. So instead of that minimal cost to make these tests freely available for the next Covid wave , which we're going to see in the months ahead. Um. then throwing them out. I mean , it's just it's just incredible. This is part of that denialism that. Oh , well , you know , Covid is not really an issue. It's it's just a common cold. Well guess what ? It's just not a common cold. There's still a significant number of deaths each week that we see with Covid. Uh , so , you know , just because we're not having a big wave right now doesn't mean that we're going to sit in this situation , uh , throughout 2025 , no less , in the future. Wow.
S1: Wow. All that in mind , people are really going to have to think about how to take care of themselves , right ? Yes.
S2: That's really where this is going. Is that , um , you have to find a trusted source , uh , like KPBS. Right. There you go. Um , you have to get , uh , you have to get , uh , verification of your information. Um , so , ideally , you know , more than one source before you take any action or don't take , for example , you know , the vaccines that are helpful or , you know , the practices that we know will help prevent diseases and promote health. So what could be more precious than our health ? And what is so tragic to see that being undermined right now ? Hmm.
S1: Well , I want to talk more about the long term impacts of Covid. According to the New York Times , the number of people reporting a disability soared in the last five years. Many Americans continue to struggle with long Covid. It's something we will dig into later in the show.
S2: And that number is staying up here in late 2024. And now , I'm sure , a large proportion of that are people with long Covid who are having , you know , serious , um , compromise of their health where they can't get back to work or only on a very limited , uh , duty just because they have , um , debilitating illness still. Um , so what are we doing about it ? Well , the NIH did invest well over $1 billion to do what was called the recover project. Unfortunately , too much of that , uh , too much of those funds were used to do further , uh , observational type studies about symptoms. And they weren't done to test drugs that have really strong potential. So we basically , uh , they blew it. And we , uh , at Scripps Research and other groups around the country are trying to get some big trials off the ground with promising candidate drugs. You know , that would be the most important thing we can do right now is find a treatment for the millions of people who are suffering long Covid.
S1:
S2: And part of the anti-science movement is to negate it , you know , a denialism. They're just like for Covid. So there still are physicians who are uncomfortable , unfamiliar. And the other problem , of course , which is even bigger , is that we don't have any good treatment. So it's it's really sad because you see people that are in desperate shape and these are often young people and they can't get back to their baseline of healthy life. And you don't have much to offer them as a physician. And we shouldn't be in this position again if we had done trials starting in the second year of Covid. Even the third year , those trials will be done. Right now , we would have tested various different , um , treatments and we'd have something to offer , but we're only starting to get off get them off the ground this year and they'll take at least a year to complete and hopefully we'll see some successes. Hmm.
S1: Hmm. Well , Doctor Topol , you're a cardiologist.
S2: Um , because it turns out that this virus gets to virtually every organ in the body. Um , and so the heart is one of those and causes inflammation in the body. And so in the heart. Uh , and this is a problem because what we have is , um , rare cases of inflammation of the heart muscle called myocarditis. But more commonly , you know , this is part of the long Covid syndrome where people have poor exercise tolerance and difficult breathing. Uh , this is also we see the issues of arrhythmias , heart rhythm disturbances and , uh , increase , uh , heart dysfunction , blood vessel , uh , abnormalities , uh , blood clotting , strokes. All these things are related to. One of the common issues is that the virus can cause inflammation of blood vessel walls. And so this is why we think we're seeing accelerated atherosclerosis of arteries. Fortunately , it isn't common to see these things , but they're certainly of increased incidence. Many studies have validated that , uh , than we had before there was such a thing as this virus. So it is having effects on the heart and jade , it's also on the brain , um , and the kidney , uh , beyond the lung and , you know , and other organs as well. So that's one of the things about this virus that people don't appreciate and get lulled into complacency. It isn't just about , you know , getting , uh , upper respiratory infection or even potentially lung. It gets to the heart and these other vital organ. Mhm.
S1: Mhm. Well , I'd like to hear you talk more about those cognitive impacts of Covid. We know it can cause brain fog. What else do you know about its effect on brain health. Yeah.
S2: Yeah. The main thing there like the heart is that you get neuroinflammation. So you get a pretty a broad inflammatory response uh in the brain. So not only does that cause cognitive decline , uh , issues with memory , but also the concern is that will it will increase or accelerate or both Alzheimer's disease dementia. So of course we don't have enough years of follow up to see the people who've had clear cut , uh , brain inflammation of whether this is going to be the outcome. But this is what we're seeing in experimental models. There's atrophy of parts of the brain and changes in structure. And this inflammation is serious. Fortunately , most people are spared. But for the small percent who get significant brain inflammation , now we have to see whether or not they're going to be subject to risk of Alzheimer's , Parkinson's and other neurodegenerative diseases that take years to have their full impact.
S1: And again , these are , you know , quality of life issues that many doctors , again , as you say , just are not equipped to even diagnose or look into.
S2: That's right. I think the problem is that there has been a misperception that the virus is can have gotten tamed over time , and it isn't nearly as much of a threat , but also that a lot of the medical community is still not up to date with the diverse Uh , multi-organ , you know , body wide hits that can be occurring. And most of us , of course , who've had Covid , have gotten through it and have not had to face this multi-organ , uh , hit and , uh , real threat. This this is a problem , though , if you even have a few percent of millions and millions of people , it's a substantial number who are affected. That too , we're talking about those are the people that , you know , they didn't do well with their what could have even been a mild infection , Jade , that they actually , um , suffered , uh , sequelae later. Uh , and even they got better from their mild infection a few weeks later and then all of a sudden symptoms of another organ , whether it be the brain , the heart , lung or whatever , uh , cropped up.
S1: Uh , you know , you mentioned denialism earlier. You know , looking back more than a century ago , I mean , this has historical precedent. And I'm thinking about the 1918 flu pandemic , which was really impacted by censorship at the time.
S2: Obviously , the only way to do this right is transparency. And we didn't have that , you know , in the Trump administration when the Covid first came five years ago. There was this whole notion that don't test because then you won't have to see the cases and things like that. Right now we have such reduction in surveillance. At least the genomics is continuing and the wastewater is continuing. But outside of that , we don't have much more to go on. And the other thing , of course , is that we could see another pandemic that's not Covid , but rather the avian flu. And in fact , you know , flu is the most likely viral organism that's going to cause another pandemic. And as you well know , there's no shortage of avian flu out there. All the cattle herds and all over the birds , all over the country. And so that could turn out to have human , human transmission. And we're not prepared just because we keep seeing this radical reduction of resources and people devoted towards public health. So these are the things that , you know , we should be concerned about. I'm trying to think that we're going to get this on track and learn from the past , as you said , even back from the past of , you know , 1918 , no less , um , in the 2022 to now era.
S1: Um , and you mentioned bird flu and there's measles going around. There's , uh , an anti-vax movement happening at the highest levels of our government.
S2: So that's something we could do. I mean , we're not doing it. That's not an expense that expensive. And it could be a priority. We clearly to get fully arms around Covid , we need to have nasal and universal vaccines. And that's going on at a very low level. And the the plug could be pulled from that any moment the way things are going. But you know , the main thing is we have to put better resources , better efficiency into CDC and public health throughout the country just because we've seen the devastation of what a new infectious disease can do to to us. And so instead of withdrawing and running away from it should be going the other direction. We should be reinforcing and making it better. Sure , it wasn't optimal , you know , managing the pandemic , uh , over these years. But there are ways we have learned to make it far better. And that does include , um , having the better vaccines that we know we can make and better medications that , you know , we should be all over this. The toll that has taken on us is profound , and it isn't being met up by the action that is needed.
S1: I've been speaking with Doctor Eric Topol , professor of medicine and executive vice president at the Scripps Research Translational Institute in La Jolla. Doctor Topol , as always , thank you so much for joining us.
S2: Thank you. Jay , great to be with you.
S1: Coming up , what it's like living with long Covid and the advancements in treatment.
S3: We know there's not going to be one cure , but there might be treatments that work and that are helpful for for different groups of people within the long Covid community.
S1: KPBS Midday Edition is back after the break. Welcome back to KPBS Midday Edition. I'm Jade Hindman. One of the things that stood out in the conversation you just heard with Doctor Eric Topol is the need for more awareness about long Covid and the symptoms people can experience long after their initial infection. In fact , studies have found that 400 million people suffer from long Covid all across the world. Well , I'm here with Miles Griffiths and Betsy Leticia , co-founders of the Sick Times. It's a publication dedicated to covering what they call the long Covid crisis. Miles and Betsy , welcome to the show.
S4: Thanks for having us on today. We appreciate it.
S3: Thank you.
S1: So glad to have you both on. So you know , Myles , there are many people who were infected at the very start of the pandemic who have developed long Covid. You were part of that first wave. What has your experience been over the past five years ? Yes.
S4: So I was infected in February of 2020. So sort of before we really knew what was going on , at least in the United States. And over that time , you know , over the rest of that year , um , many , many others developed long Covid. I now identify as disabled. It's completely sort of changed my life. How I'm able to work , what physical activities I can do , spend a lot more time inside and a lot less time doing a lot of hobbies like running and mountain climbing that I used to do. And yeah , over the past five years , like many people with long Covid , I've been reinfected and a lot of my reinfections have made my disability worse. So , um , there's a real need to both address long Covid and find treatments and cures to help people. Also support people who are unable to work and are having difficulty accessing disability. Um , and also preventing more cases because I think there's been a lot of sort of coverage on long Covid over this , you know , five year look back. Um , a lot of it sort of framed it as a problem of the past. And we need to help people with research , but people are still developing it today , unfortunately.
S1: I'm so sorry you're experiencing all of this , but how did you realize that it was long Covid ? Yes.
S4: So it took a long. It took a while. Um , basically , I lost my my taste and smell when I first had my symptoms. I had symptoms of a DVT , a deep vein thrombosis , which is like a blood clot in your leg. And these are all symptoms we know to be long Covid , um , you know , associated with Covid and long Covid now And it took a it took a lot of people sharing their experiences online for me to understand what was happening. And I'm so grateful for all the brave people who started to share their experiences early on , because in early 2020 , you probably remember a lot of the messaging was that if you were quote unquote young and healthy , you would get Covid and you would , you know , it would take two weeks to resolve. But people really pushed back on that narrative , sharing their experiences of illnesses , you know , lasting months and then months became years. And now here we are , five years , many of us , unfortunately , still very sick and disabled. Yeah.
S1: Yeah. And there are a lot of people who are experiencing the same thing you are , but have had difficulty getting that diagnosis.
S4: So it took a it took a while. I eventually went to a long Covid clinic. That was somewhat helpful. There's very sort of mixed results on the amount of help Long-covid clinics can offer. I was diagnosed because of , you know , I didn't have a positive test at the time because the test didn't exist in February of 2020. So a lot of long Covid today , and even in big recommendations from places like the Institutes of Medicine , the IOM , there diagnostic criteria , you don't need a positive test for it. They they do it through symptoms and through the time after a Covid infection. So after three months generally is when long Covid can be diagnosed following a Covid infection. Mhm.
S1: Mhm. Well Betsy I mean you've been following the latest on long Covid research and have been reporting on it for the past couple of years out of that huge body of research. What stands out to you currently.
S3: Well that's a good question. I mean , a couple of things that stand out. I think we seem to be getting closer to understanding Different causes for long Covid. I think one thing that sticks out to me that I always try to emphasize in my reporting , is that it's likely not one unified condition or disease. Uh , researchers talk about it as almost analogous to cancer in saying that there may be several different kind of classes or categories within long-covid , and those could be associated with different symptoms or with different like underlying biological problems. Uh , so one of those is called viral persistence , which is this theory that the SARS-CoV-2 virus is like continuing to replicate in different parts of the body. So there's just viral reservoirs that are causing problems to different organ systems. Another theory is that people's gut microbiomes have become dysfunctional. Uh , or immune systems have become dysfunctional. And those can be connected to a lot of other issues and symptoms. And there also can be what's called reactivation of latent viruses. So people who may have had a Epstein-Barr virus , just like hanging out in their body , is not really doing anything. But then suddenly Covid comes along and the combination of those two viruses together can reactivate the EBV and lead to symptoms. So those are just a couple of the big the big theories. And it seems like research is kind of getting closer to identifying these and linking some of these biological issues to symptoms. And then of course , the increased interest in clinical trials , both for seeking to identify potential new treatments for long Covid and also repurposing drugs from other diseases. I know that , like , for example , there are trials of a few different antiviral drugs right now. So Covid specific antivirals like Paxlovid. But also there's a trial looking at HIV , antivirals and other things like that. So I think people are really looking forward to seeing the results of some of these trials. Some have started just in the last year or so , so we don't really know yet what the results are going to be. Um , and all of that will hopefully bring us closer to understanding. We know there's not going to be one cure , but there might be treatments that work and that are helpful for for different groups of people within the Long-covid community.
S1: Um , I mean , all of this research happening , trials and observations. I mean , are there any treatments for long Covid currently ? Yeah.
S4: So Betsy was talking about long Covid is like this , this umbrella term. So we cover a lot of related diseases that people with long Covid get diagnosed with. So some of those common ones are dysautonomia. One really common form of that , that a lot of people with long Covid experience is called Potts or postural orthostatic tachycardia syndrome. So there are treatments that help with certain forms of dysautonomia , so beta blockers can help some people.
S1:
S4: So it can be really disabling because it might force you to always sort of be seated. You might not be able to walk or do these other things as much. So if you're , you know , getting up any time you get up and if you might feel really , really dizzy , that might be a sign of dysautonomia.
S1:
S4: There's beta blockers which work for some people and that can help slow down heart rates. Tachycardia means your heart's going really , really fast. You can also wear compression garments on your legs , which help with blood flow , keeping really well hydrated with salts. So these are things a lot of people have sort of , you know , are figuring out , but these also aren't cures. These are can slightly help. And , um , you know , don't fully resolve the issue and still can be very disabling , even if you sort of figure out exactly the right treatment for yourself.
S1: You know , earlier you mentioned long Covid clinics , but the wait lists are often long and experiences can vary from clinic to clinic. What have you experienced or seen ? Yeah.
S4: So I went to a clinic. I guess it was three years ago now. It took a long time to get in. I think I waited for like a year to get in. Um , and that's common in a lot. Still , there are some clinics , unfortunately , that have been closing over the past few years , and a lot of that is happening because there aren't a lot of treatments. A lot of patients that I've spoken with kind of lose hope in them because it's expensive sometimes to go. It takes a lot of energy to get to these clinics. And if there's no actual , you know , FDA approved treatments or these other things I mentioned like for dis autonomia or mast cell activation syndrome. If they're not fully helping patients stop going , because a lot of clinics and a lot of people with long Covid want these clinics to start taking on these , like other possible medications that are happening in clinical trials. So I definitely recommend going to long Covid clinics , um , trying to if you're able to and have the privilege and the healthcare to get in. But there's also sort of I think the best way to do that is to speak with other patient communities and support groups to find recommendations , because mileage varies very much. At long Covid clinics , you can have really great ones and there's really wonderful ones around the country. Um , and then sometimes there's one that , ah , that very much prescribed treatments that could be harmful , um , including telling us that we just need to exercise and then we're just deconditioned when we know from the science that that is not the case we're dealing with. As Betsy said , viral persistence or autoimmunity and no amount of exercise will help us.
S1: Well , that leads me to my next question. I mean , what are some of the common misconceptions about long Covid that you hear , Betsy ? Yeah.
S3: So one common misconception certainly is that it is a condition of like quote unquote , weeks or months. That's a phrase we sometimes see in descriptions of long Covid , which of course , for some people , you know , they might have symptoms for a few months and then find it resolved. But many people like Myles have been dealing with this for five years at this point. And there are other similar conditions or related like diagnoses that people can have with long Covid like Pots. We were talking about those can be lifelong conditions. Um , so many people are really preparing for just a complete change that will impact the rest of their lives. Another , another common misconception is that , as Myles was saying , people are just like deconditioned or just lazy and just need to exercise. Um , there there are many , many research papers at this point documenting biological changes and also papers and people's experiences showing that in a lot of cases , exercise could actually make symptoms worse. Um , so folks in the Long-covid community and knowledgeable experts will recommend that Rest is really important. In fact , for people who are just dealing with an acute case , if you were infected recently , the guidance is to rest for at least a couple of weeks , even if you feel like completely fine. It's really recommended to rest. Take it easy as much as possible with the constraints of work and so forth , of course , and to really look out for any symptoms that might start. Another misconception , I think , is that long Covid is like mysterious. Um , you know , as we've been talking about , there's a lot of research that's been done at this point. Scientists have learned a lot about it. Of course , there's a lot we still don't know. Otherwise we would have treatments by now. Um , but it's far from , like , a new and complete mystery. Um , so , yeah , I think those are a couple of the big ones. Yeah.
S1: Yeah. Myles is someone who is experiencing long Covid.
S4: Like is it real ? I've seen some of that framing in some of these five year anniversary pieces and a lot of like minimization of long Covid. If it's , you know , it's not that bad. Um , what we've seen over the past five years is I've had many people and many people in the community. I've seen people who have come into the community asking for advice , saying they never believed that long Covid was real or that bad , quote unquote. And then they developed it themselves and unfortunately become disabled from it. So there's this. I think there's this sort of belief that it's such a terrible illness and disability to. And it can infect your life , affect your life so much. And that's such a scary thought that I think a lot of people try to just avoid it and quote unquote , go back to normal. But what I always sort of remind people is what is your plan if if you get an illness like this , what what do you do ? We know there's pretty high rates. About 7% of American adults from recent studies from the US government , um , have shown 400 million people , as we talked about at the start of this. So I think , yeah , it's it's just a very important topic that I think people overlook because it's scary. And we live in a very ableist society where we're all about , you know , producing and contributing to society. And long Covid can take that away.
S1: Coming up , publishers of The Sick Times talk about their motivation behind starting the website.
S4: We founded this publication and really wanted something to be for people with long Covid , and also introduce the public to the disease that wasn't getting enough attention.
S1: KPBS Midday Edition is back after the break. Welcome back. You're listening to KPBS Midday Edition. I'm Jade Hindman. We're continuing our conversation about long Covid with Miles Griffis and Betsy Leticia , co-founders of The Sick Times. So , Betsy , earlier this year , The Sick Times published a piece on how long Covid has affected friendships and other interpersonal relationships.
S3: Um , and the story really found that for a lot of people , not only those who have long Covid themselves , but also those who are still taking Covid precautions very seriously for like whatever personal health reason or moral reason can feel very isolated from friendships and social relationships. So October , the writer actually made a survey for readers to contribute their experiences in shaping that story and received , I believe it was like 2500 responses , which our publication is growing. You know that that's a lot for us. And so I think the the response and many people who took that survey , you know , did express that they had lost friendships or felt estranged from friendships due to long Covid and due to continuing To do things like masking in public spaces. I mean , I've experienced some of this myself , just as a journalist who covers this topic and who knows a lot about it and who would really like to reduce my , you know , my risk of Covid infections in day to day life. It's challenging. There's a lot that you have to do with sort of an asterisk , right ? Like wearing a mask to travel or not eating indoors at restaurants , going to conferences , professional events with a mask on , having to make time to go do things outside , testing a lot. All of these things , both can take time and resources. Some of these things are expensive , like tests are very expensive these days , and it can be both tricky to keep that up and tricky to sort of still find community or build community when you're doing that. Luckily as the story that October wrote talks about. There are groups , I think , more and more of them now that aim to really support people in doing this kind of thing. So there are , for example , mass blocks , which are mutual aid groups that distribute high quality masks to people. And there are like meeting groups that aim to be communal spaces for people who are still taking Covid precautions for whatever reason. We have some of those in New York City where I live , and I think that kind of thing is really helpful , and I think there continues to be more of that sort of activity.
S1: So Miles , Betsy just pointed out a few things in terms of friendships and those interpersonal relationships.
S4: I think , um , people are very uncomfortable with illness and disability , and I think a way that a lot of people deal with that is just by sort of letting Friendships fizzle out and stop reaching out. When you live with like an energy limiting illness and disability like long Covid , it can be hard to plan. It can be hard for your friends to make considerations for for your symptoms and for avoiding inviting more infections. Like I was saying , like both of my reinfections have made my illness worse. So it's hard. It's hard to find people who understand it. So I've built a lot of community with other people with long Covid since I've gotten it. There's a lot of my friends sort of before the pandemic , a lot have just sort of fizzled away , and that's a very common experience with long Covid. We see that in relationships , friendships , family. It can really strain a lot of different social factors of your life. Hmm.
S1: Hmm. So you both co-founded The Sick Times to sort of rewrite this narrative around long Covid. How has long Covid reshaped your own relationship to journalism ? Myles Miles. Yeah.
S4: Yeah. Betsy and I talk about this a lot , I think. When. Yeah , when we. When I became a journalist. It's sort of. You were. I feel like the the long form , like , you know , New Yorker type features , like big feature writing for magazines was sort of what we were told we were , you know , like , that's the that's the highest pay and that's where you get the most visibility. So I feel like I always thought that's where I wanted to go. But long Covid has a really taught me the importance of service journalism and really finding good information , getting it to a community , keeping powerful actors accountable. The long Covid crisis has been prolonged because the government has been able to sort of push it away and and brush it to the side , and we just didn't see that accountability in a lot of the media. So we we founded this publication and really wanted something to be for people with long Covid and also introduce the public to the disease that that wasn't getting enough attention. Mhm.
S1: Mhm. And Betsy , what about you , especially when we currently have an administration that denies a lot of research and science behind Covid behind vaccines. I would imagine that you probably have to look to other sources , other trusted sources for even tracking of this disease.
S3: I finished college in 2019 , so most of my time in journalism has been Covid era. I definitely relate to what Myles said about , you know , transitioning from being someone who was more interested in , like very lyrical narrative long form to being more interested in service journalism. I've also personally become more interested in the business side of things. Running a news publication is not easy. And so I think just as some of the researchers we talked to are perhaps looking more to private funding , I think we have to think about that ourselves as we look for grants. Of course , most journalists are not getting grants from the government anyway , with the exception of public broadcasting , of course. But , you know , I think we we definitely are trying to think more creatively about that , as are many of the researchers and advocates that we speak with. And similarly , in terms of tracking information , you know , there are still government sources providing information about things like Covid , hospitalizations , wastewater surveillance. But I think it's important , and I try to emphasize this when I write about the numbers myself , that we're always getting an incomplete picture. There's always some source of bias in there , even when Biden was president , you know , ah , these systems have never been perfect. And yeah , I guess just understanding the level of uncertainty and trying to communicate about that , I think , is something I have learned in the last couple of years.
S1: All right. Well , I've been speaking with Miles Griffiths and Betsy Lawton , co-founders of the Sick Times. Myles and Betsy. Thank you so much for your insight.
S4: We appreciate it. Thanks for having us on.
S3: Thank you. Thanks for covering along Covid.
S1: That's our show for today. I'm your host , Jade Hindman. Thanks for tuning in to Midday Edition. Be sure to have a great day on purpose , everyone.
