On March 11, 2020, after over 118,000 cases of COVID-19 had been reported in 114 countries, the World Health Organization declared COVID-19 a pandemic. The term Long COVID began popping up across the globe shortly after. People with Long COVID experience any combination of a huge number of symptoms that range from gastrointestinal issues to brain fog to extreme exhaustion and an inability to do what were once pretty simple tasks like getting dressed, preparing meals, or even getting out of bed.
Although we have a ways to go before we understand a disease as complex as Long COVID, over the last few years scientists have made significant research strides and the millions of people suffering from Long COVID have brought light to health conditions including ME/CFS, that many people didn’t previously realize existed. In this episode, you’ll hear from an ME/CFS researcher, a Long COVID patient about her difficult and winding experience to understand what was happening in her body following a COVID infection, and a journalist and author who recently wrote a book on Long COVID.
Transcript of this Episode
Abby Koppes: So at this point, I'm having migraine, I'm having heart palpitations, I'm having extreme fatigue. I really can barely get out of bed to just use the bathroom that's 15 feet from my bed. My eyes are blurry, things are really falling apart at this point and I'm asking for help.
Sam Jones: That’s Abigail Koppes, Associate Professor of Chemical Engineering at Northeastern University in Boston. At the start of 2020, Abby was preparing to submit for tenure, which is a ton of work and also a big deal in the academic world because being tenured means your position as a professor is essentially permanent.
Abby Koppes: And then in my personal life, I was really big into running, so I had just run two marathons, Philly and the Newport, Rhode Island, numerous road races, big half marathon, like Newburyport half marathon, things like that.
I met my husband ski racing in high school, so that's been a big part of my life, would probably get about 30 days a year. So big on the work hard, play hard mindset, usually always doing something … rock climbing, anything you can think of outdoors or activity based.
Sam: But then in March, 2020, just before lockdown in the U.S., Abby got COVID-19. It was a really mild case, she lost her smell and taste for five-ish days, felt a bit fatigued, and thought that was it. But not long after, things changed, and her world was turned completely upside down. Welcome to Tiny Matters, I’m Sam Jones and I’m joined by my co-host Deboki Chakravarti.
Deboki Chakravarti: Today’s episode focuses on Long COVID — what scientists have learned about it over the last few years and its overlap with other health conditions that many people didn’t realize existed until now. You’ll hear more from Abby about her difficult and winding experience to understand what was happening in her body, as well as from a journalist and author who recently wrote a book on Long COVID.
Before we go any further, we want to provide a trigger warning. There is very brief mention of self harm as well as a case of stillbirth. So, if this episode is not for you, go check out our pretty hefty back catalog. The other thing I want to mention is that, in this episode’s description, we will leave a bunch of links to long COVID resources, including important information on disability and clinical trial information as well as support groups and links for caregivers. There is a lot of helpful, well organized info out there and we want you to be able to easily access it.
Sam: OK, so, let’s dive in. For many years, we’ve known that COVID-19 is caused by a virus called SARS-CoV-2, which stands for severe-acute-respiratory-syndrome-related coronavirus-2. The first SARS popped up at the end of 2002 but was largely contained. No cases have been detected in about a decade.
For many people, SARS-CoV-2 is cleared by the immune system within a couple of weeks and symptoms, which are often respiratory, subside. And being vaccinated can give your immune system a boost that helps clear out the virus and lessen symptoms. But for some people, months, maybe years after a bout with COVID-19, they are still not feeling back to normal and have in fact developed a whole new set of symptoms. They have Long COVID.
Deboki: People with Long COVID experience any combination of a huge number of symptoms. Over 200 in fact. And they range from gastrointestinal issues to brain fog to extreme exhaustion and an inability to do what were once pretty simple tasks like getting dressed, preparing meals, or even getting out of bed.
Studies are showing that people who are not vaccinated against COVID-19 may have a higher risk of developing Long COVID compared to people who have been vaccinated. But still, even people who have received the vaccine have ended up with Long COVID. And every time you are infected or reinfected with SARS-CoV-2, you are at risk.
Sam: On March 11, 2020 after over 118,000 cases of COVID in 114 countries, the World Health Organization declared COVID-19 a pandemic. The term Long COVID popped up shortly after.
Ryan Prior: The term Long COVID dates to May 20th, 2020. So a couple months into the pandemic, when an Italian archeologist by the name of Elisa Perego tweeted about it, she tweeted an article from an Italian newspaper La Repubblica, along with a hashtag #longcovid. So even though she was primarily tweeting in Italian, she did use an English language hashtag.
Sam: That’s Ryan Prior, a science and health journalist and author. He wrote a book about Long COVID that recently came out in paperback. It’s titled, The Long Haul: How Long COVID Survivors Are Revolutionizing Healthcare.
Ryan Prior: And then in France it is Apresjour20 or apresj20, which means after day 20. So what they're referring to in French was that you're supposed to get better within 20 days. So they were always talking about, here's what's happening to me after my 20th day of having been infected…And then in the Spanish context, it's hashtag #covidpersistente. I don't have the hashtags necessarily in Chinese, Japanese, but there's similar concepts popping up.
Deboki: In January, 2023, a paper came out estimating that around 65 million people around the world had Long COVID. That was a year and a half ago and people are still being infected, meaning that number is likely much, much higher.
In the United States, Long COVID is considered a disability, but getting the appropriate accommodations can still be difficult for patients to navigate. And, especially at the start of the pandemic, even figuring out how to bill insurance for Long COVID patient appointments and treatments was a mess.
Ryan Prior: As more and more doctors were encountering Long COVID and seeing how severely debilitating it was, more and more doctors have clearly gotten the message, but it's difficult for a doctor because they do not have an easy diagnostic test to delineate if the person does or does not have Long COVID.
To put yourself in the doctor's shoes a little bit, it's tricky because in order to be reimbursed for the appointment, they would have to attach it to a cost code, and then the insurance company would have to recognize that cost code as being a valid way of describing the illness. And there wasn't a cost code for long COVID, especially early in the pandemic… there was a lot of financial pressure on doctors, it didn't fit their model. It didn't fit the classical infection model of how human physiology was supposed to work, and it didn't fit the insurance company's financial model of how the practice of healthcare was supposed to work.
Sam with Ryan Prior: At least in the United States, does insurance now have a code for that?
Ryan Prior: There is a code and to get even further into the labyrinth of the healthcare system that not as many doctors know that the code exists. So even though the government has created the code and it's reimbursable through Medicare, Medicaid, et cetera, there's actually a really necessary PR push to let people know that there's a code. So I would've never thought that that would be a thing I have to talk about, but we do have to advocate for the use of the code.
Deboki: For Abby, when she first started developing symptoms, the term “Long COVID” didn’t exist yet. She began to doubt, discount, and try to explain away how she was feeling.
Abby Koppes: After having COVID, pretty much immediately following, I would be waking up in the night to being short of breath. I was feeling like I was having anxiety, but without the mind being involved. So I just chalked it up at the time to, oh, I'm going through tenure. Oh, I'm getting older. I was 35 at the time. These things are happening. I must be stressed about the pandemic. And I kind of think I gaslit myself a bit into pointing out what was going on because at the time we really didn't know what could happen.
Sam: Abby is right, most of us were totally unaware that there could be long-term consequences resulting from a viral infection like COVID-19. But some people did know that was a risk, including Ryan. At the beginning of the pandemic he was working as a reporter for CNN.
Ryan Prior: In mid-February going into March, my phone just felt like it was ringing off the hook with different scientists or advocates who were calling me to tell me … they were saying I needed to write articles for CNN to warn people about the prospect of these long-term symptoms. And I was busy with just reporting on the pandemic and the early phase. I didn't really have time to think about how to warn people long-term, nor did I have any belief that I could convince my editors to believe in what I would term speculation about a future illness that hadn't even been proven to exist yet. But I think all of us knew it was going to happen.
Sam: A virus or bacterium causing serious, seemingly unrelated chronic health issues was not a new concept to Ryan, because he had experienced it years before.
Ryan Prior: It’s always hard to track exactly when to start my own backstory with this, but as a patient, a journalist, a filmmaker, and an advocate, my backstory with chronic illness goes back about 14 years prior to the pandemic. So I tell people I had about a decade and a half head start writing this book as a patient and as an advocate for people with complex chronic illness.
Ryan Prior: I was 16 going on 17 and was part of the Air Force family. We were living at Robins Air Force Base in central Georgia. I was a cross country runner, a soccer player, and I took a weightlifting class every day at lunchtime. I was taking three AP classes and I was really determined to get into a really good college. I wanted to go to West Point or Princeton. And so I was probably overdoing it, which is something that I think that we put a lot of high school students into kind of a pressure cooker environment. And so I came home from school on October 22nd, 2006, and I slept for 16 hours, and I did that again and again and again the whole rest of the week.
Deboki: Within two weeks it became clear that Ryan could no longer attend school. He had to be on a hospital homebound program, with teachers coming to his house for the rest of the school year. Ryan’s mom was a nurse, helping the family navigate the healthcare system. Ryan told us he went to 16 different doctors, including a neurologist, infectious disease specialist, a rheumatologist, a psychiatrist, and an endocrinologist.
Ryan Prior: So I learned, as a 16 or 17-year-old, a lot of medical jargon as I was having to sort through all this to figure out how to try to get my life back. So fast forward, I went to college at the University of Georgia, partly because it was close to home and I wanted to live close to home for health reasons, if not for anything else. My parents took me to get an IV treatment every month in Atlanta, and so they took a whole day off from work to drive me there and drive me back. I would've been too exhausted to make it there. Taking 15 pills a day, getting an IV treatment once a month, and then usually giving myself a shot, a B12 shot, every week was how I got my way through college…
Deboki: Eventually, after years of this, Ryan was diagnosed with myalgic encephalomyelitis chronic fatigue syndrome or ME/CFS, which is a complex neuro-immune syndrome that, even before the pandemic, affected millions of people across the globe.
Sam: ME/CFS often appears following a bacterial or viral infection. In Ryan’s case, the likely trigger was Lyme disease, caused by a bacteria passed to him by a tick bite he got at Boy Scout camp the summer before he got sick. But ME/CFS doesn’t only present in people who have gotten Lyme disease. It has been seen in Zika and Ebola patients, the original SARS outbreak, and now following a COVID-19 infection. ME/CFS is what many Long COVID patients are experiencing.
Deboki: People with ME/CFS face unrelenting fatigue that is not improved by rest and worsens after both physical and mental activity, leading to post-exertional malaise, often referred to as “pem” or P-E-M. Other symptoms include but are not limited to brain fog, issues sleeping, dizziness, and muscle and joint pain.
Another syndrome that you may have heard mentioned in connection with Long COVID is postural orthostatic tachycardia syndrome or POTS, which is an autonomic nervous system disorder that has also been linked to previous infection.
Our autonomic nervous system regulates things we don’t consciously control, like sweating and blood pressure. Symptoms of POTS overlap with some of those seen in ME/CFS, including fatigue and brain fog. And people with POTS experience a rapid increase in blood pressure when they switch from lying down to standing up, causing dizziness and fainting, which are also symptoms of ME/CFS. And the risk factors involved for developing these syndromes, including genetic predisposition, are still unclear.
Sam: In Summer of 2021, a bit over a year after her symptoms first began, Abby traveled to a friend’s wedding in California. While there, she was completely debilitated by a horrible migraine paired with tinnitus, which is a ringing or buzzing in your ears. Abby was experiencing tinnitus 24/7, making it impossible to sleep. And it continued when she returned home.
Abby Koppes: And then what happened was I was laying on my couch … I was short of breath and I was calling to my husband, “I’m going to faint.” And my Apple Watch said my heart rate was about 200 beats per minute. And so I went to the ER because that's what you do when you have something like this happen.
Sam: So Abby goes to the ER, they give her fluids, tell her she’s probably having an anxiety attack, and send her on her way. Two weeks later, the same thing happens again. And, again, she ends up at the ER. They give her a Xanax, and send her home. She was frustrated, but also confused. Fortunately, she soon had an appointment with a neurologist. Unfortunately, over the next few months she then had to go through a range of migraine medications, almost all of which did nothing. Actually, one in particular had horrible off target effects.
Abby Koppes: They put me on Topiramate, which is another common medication that's kind of an old school, but works for a lot of people. My friends who work in drug manufacturing would call it a “dirty drug,” meaning it has a lot of off-target effects, but it can help people. So I got on that and I had an allergic reaction to it. So my heart rate was off the charts. I felt incredibly uncomfortable, but I'm being told, oh, the side effects will go away. This is kind of common when you're ramping up. So I ramp up on it for two weeks. At this point, it feels like my entire body has been set on fire and I mean someone dumped hot oil on my body and lit me on fire, which I didn't know was an experience you could have as a human and be alive.
And so at this point, I'm having migraine, I'm having heart palpitations, I'm having extreme fatigue. I really can barely get out of bed to just use the bathroom that's 15 feet from my bed. My eyes are blurry, things are really falling apart at this point and I'm asking for help.
Deboki: Finally Abby is prescribed a CGRP inhibitor. CGRP or Calcitonin gene-related peptide is a protein that is secreted by your nervous system to essentially tell your body that you’re in pain, and it seems to be produced more during a migraine. CGRP inhibitors are newer medications that block the CGRP receptor and therefore activity of the protein.
So this medication helps Abby with her migraines some, but they’re not gone and, in addition, she's feeling like something is wrong with her nervous system. She has tingling in her hands and feet and soon she’s experiencing Reynaud’s, where your blood stops flowing properly to your fingers and toes, causing them to turn white. This is a common sign of an autoimmune disorder, where your body attacks not just pathogenic invaders like viruses and bacteria, but your own healthy cells.
Sam: Abby’s referred to a rheumatologist who does blood tests and sees that she is positive for antinuclear antibody, which is a common marker of autoimmune disease. Months pass and then more blood tests show she has Sjogren's syndrome, a more specific autoimmune condition. She’s also soon diagnosed with occipital neuralgia, a condition in which the occipital nerves, which run through the scalp, are inflamed, causing severe pain.
Abby Koppes: So now I'm formally diagnosed with chronic migraine. I'm diagnosed with Sjogren's and I'm diagnosed with occipital neuralgia.
I was in the grocery store one day and it felt like someone had taken a hot electrocuted ax to my eye socket and I dropped to the floor carrying a basket of food and I was just like, what was that? It was the most pain I've ever experienced in my entire life… I talked to my neurologist about it and they're like, well, we think you might have trigeminal neuralgia. Google that. So trigeminal neuralgia is an impingement or dysfunction of the nerves that innervate your face. That's your teeth, your eyes, your nose, things like that. And it's actually considered one of the most painful diseases known to man. It's above kidney stones, it's above childbirth, things like that. I started experiencing this pain multiple times a day.
Sam: So Abby’s rheumatologist and neurologist put their heads together and come back to Abby with a new diagnosis: small fiber neuropathy, which can be the result of a previous infection.
Abby Koppes: Basically they're telling me that these autoimmune diseases and overlapping diseases like small fiber neuropathy can be caused by viral insult or something traumatic like a car accident where you have a lot of inflammation in your body. And this is the first time I've heard of this and I'm a scientist, of course, I will say during this time I'm looking up and trying to find answers on my own because I can't help it. It's what I do. I'm reading journals. I had thought maybe I had something like small fiber, but you just don't know because you've never experienced these feelings before... Obviously I'm not a medical professional in that sense, but I can read scientific literature because my research is actually in neural engineering. So we study how nerves function. We study nerve injury, we study ways to build models to look at how nervous system cells talk to each other.
So I can read and understand that language. And while all these diagnoses are coming in, I'm reading as much as I can. I suspected that I had Long COVID at this point, it's a word that's being thrown around, right?
Deboki: Abby undergoes more tests and finally gets diagnosed with post viral autoimmune small fiber polyneuropathy.
Abby Koppes: It's very rare. And basically what this means is that my own body after getting COVID is now attacking myself and is specifically attacking my nervous system. … And so three years post actually having COVID is when I actually got the diagnosis for this disease that had been causing this immense pain, fatigue. I was also having PEM, which I didn't know was a thing until I was reading and learning from the ME community, which is post exertional malaise.
When I first got sick, they're like, “you have migraine, exercise is good for that.” I'm like, great, I love exercising. I've been exercising my whole life, playing sports through college, all these things. So I'm continuing to exercise when I first got sick, and then I would have this crash a few days later and I really didn't know I was making myself worse.
Deboki: Long COVID has made researchers and doctors rethink a lot of things, like how to approach exercise, and what viruses and bacteria can do to a person beyond the acute infection.
Sam with Michael VanElzakker: From your perspective as a scientist, as a researcher, do you feel like it took a while for scientists and institutions to get on board with this concept of Long COVID or long-term impacts from a SARS-COV-2 infection?
Michael VanElzakker: It always takes too long because people are sick and not getting better. But in sort of the geological timescale of chronic illness, it actually felt really quick to me because I'd been studying myalgic encephalomyelitis or chronic fatigue syndrome for many years.
Deboki: That’s Michael VanElzakker, a neuroscientist at Harvard Medical School and Massachusetts General Hospital.
Michael VanElzakker: And a big part of what we were doing in that time was just trying to raise awareness, make people understand what it is, what happens. So the fact that COVID hit and it affected hundreds of millions of people, billions of people, the fact that it is now sort of a mainstream topic of conversation actually feels like a really seismic shift from my perspective actually.
Deboki: Researchers like Michael had been studying the link between an infection and ME/CFS for years before Long COVID, which gave them a head start in understanding what could be happening to these patients.
Michael VanElzakker: The most straightforward, obvious possibility is that a subset of individuals just don't fully clear the pathogen. I mean, that's sort of an obvious Occam's razor type question. And we find that that's true even in a Ebola virus, for example, which is another single stranded RNA virus. There’s, just as an example, an American doctor who was in Africa helping with Ebola, got infected, survived as the majority of people do, and had sort of ongoing symptoms, long-term symptoms, including a lot of eye symptoms. And later finally, they were able to find live virus in his eye, in his fluid. And you think of Ebola as being this devastating acute illness, which it is, but also these viruses are really capable of changing their behavior in ways that allow them to persist and not quite cause so much damage as they do acutely. And so we thought that that would be an important thing to investigate early on, whether or not the SARS-CoV-2 virus is simply persisting in a subset of individuals.
Sam with Michael VanElzakker: And it is one of these things where you would really have to be studied for that, right? Because it's not necessarily going to be in your mucus anymore, it's going to be in many other parts of your body.
Michael VanElzakker: So you have just articulated something that most MDs and scientists have struggled understanding. That's exactly correct. So we saw early on, just as an example, there was a terrible case of a woman that had a stillbirth who had COVID while she was pregnant, tested negative nasopharyngeal, tested negative blood, but the placenta was positive. So if the virus has moved into different tissues, which it does, then it won't be detectable in nasopharyngeal swab or stool or wherever you're looking.
Deboki: There’s now evidence that over a year after getting COVID-19, some people haven't fully cleared the virus. Pieces of SARS-CoV-2 are still found circulating in people’s blood and different tissues. In fact, research over the past few years has shown that this is the case for many different viruses. What this means is that your immune system is in constant fight mode, which triggers the production of immune cells that cause inflammation, leading to downstream symptoms that may result in a ME/CFS diagnosis.
Sam: In a study currently undergoing peer review, researchers at UCSF used positron emission tomography, or PET scans, to look at immune function in people with Long COVID. This technique uses radioactive substances known as radiotracers to measure changes in cell behavior, including glucose metabolism in immune cells, as a proxy for cell activity. The researchers found increased immune cell activation in the spinal cords and gut walls of people with Long COVID.
Research is also showing that COVID-19 increases activation of glial cells in the brain. These cells were for a long time thought of as just support cells for neurons. But it turns out that they play a number of roles in the central nervous system, including in immune response. And glial cell inflammation might disrupt neural connections throughout the brain, which could be what underlies brain fog and memory issues seen in Long COVID.
Deboki: Last month, Michael and his research group published a study showing that, based on PET scan data, people with Long COVID aren’t just showing neuroinflammation.
Michael VanElzakker: What we found is that the level of neuroinflammation in their brains correlated with the concentration of measurements in their blood that are related to vascular damage. So COVID-19 is a particularly vascular illness, so it causes a coagulation. That's how a lot of people end up dying from acute COVID-19 is sort of a coagulopathy.
Deboki: And you can find me at okidokiboki. See you next time.
Sam with Michael VanElzakker: So with coagulopathy, you mean you have blood clotting or other vascular events, heart attack, things like that?
Michael VanElzakker: Exactly, exactly. So even after acute COVID, the risk of vascular events like stroke, things like that increases quite significantly in the year after COVID. So it seems to have sort of a particular vascular component.
Deboki: Michael told us that the COVID-19 pandemic has not only driven home the reality of viral infections causing long-term illness, but that viruses themselves could be responsible for a whole lot more than we realized.
Michael VanElzakker: They can have a lot of detrimental health effects, a lot of illnesses that we currently consider to be somewhat mysterious, in my opinion, it's quite likely that pathogens are at least involved in some sense. So things like multiple sclerosis, rheumatoid arthritis, lupus, those sorts of conditions, increasing evidence that viruses are involved, whether it's a direct causal or whether it's a vulnerability, that's something that can be elucidated. But I think the opportunity here is a focus on viruses per se, and developing better antivirals. We still don't have very good antivirals. It's called an antiviral, but most of them don't really kill viruses. They just block part of their function. And if they're already in a cell then an antiviral that blocks cell entry won't help, as an example.
Deboki: So I think we should take a second to reiterate this point, because earlier when we were talking about how SARS-CoV-2 can stick around in different parts of the body long after the initial infection, you might have been thinking, “why don’t we just give people with long COVID antivirals to get rid of any virus that remains?” The thing is, if a virus is hiding away, hanging out inside your gut for example, it's hard for current antivirals to reach it.
Michael VanElzakker: I think that we have a long way to go for understanding exactly what viruses can do to human health and understanding how best to fight them.
Michael VanElzakker: For example, I've seen patients where they had COVID onset, real sick, and it turns out they have a Bartonella infection and their body was keeping their Bartonella under reasonably well controlled, but pathogens for their own benefit sabotage or evade the host's immune system.
Sam with Michael VanElzakker: That's really fascinating. Your immune system is already working overtime to suppress something that you don't know you have because it's being suppressed. Something else comes in, it's just too much.
Michael VanElzakker: There's kind of like a constant Serengeti happening in and on us all the time. We're extremely not sterile. That's one of the things that I think medicine hasn't quite come to grips with. We're very good at suppressing the immune system, but we're not as good at asking why the immune system is so activated and there's this constant push pull in our bodies. Most of us are winning, and then we get to a point where we're not, and something like COVID-19 can push some people over the edge.
Deboki: There is so much to talk about when it comes to Long COVID research — we only scratched the surface — and that’s a really great thing. With studies comes knowledge that can lead to treatments, though at this point there is still no FDA approved therapy for Long COVID. Long COVID patients are having to deal with their symptoms through trial and error with their doctors. Abby is still navigating things, but I am happy to report that in recent months she has seen improvements in her symptoms.
That’s thanks to a combination of medications, including Botox injections which are helping with the migraines she experiences. Botox for migraine is actually a pretty common approach. The active ingredient in Botox is botulinum toxin, which blocks chemical signals that cause muscles to contract, reducing pain.
Sam: Abby also receives IVIG treatments. IVIG stands for intravenous immunoglobulin. It’s a pooled human antibody treatment that is used to manage a huge range of different immunodeficiency and autoimmune conditions. It can help strengthen someone’s immune system to fight off a pathogen but also neutralize harmful antibodies that are causing inflammation.
Abby Koppes: I still have all these symptoms, but I would say they're a lot better. Even just listening to how I'm talking to you, I feel as though I'm speaking fairly clearly, although I'm trying to find words here and there, but just the improvement in terms of my ability to stand for 10, 15 minutes now versus zero, or my ability to manage crashes by doing a technique called pacing, which is when you try not to go over that PEM threshold, my limit has gotten higher for what I can do. So there's physical, mental tools. You can learn a lot from the community of people who have been there before that were ignored.
And I think that even me being someone in a city like Boston that has great medical care, I'm a white middle class het woman with some privilege, and it still took me three years to get diagnosed…Millions of people are experiencing this. I'm one person and I feel like I have the energy now to hopefully speak out a little bit as a scientist, someone who's kind of in between this patient population and scientist to population to hopefully bring some light to this.
Sam: Patient stories like Abby’s are so important, and they are a big part of Ryan’s book. One of the first people Ryan mentions is Fiona Lowenstein, the founder of wellness collective Body Politic. When the pandemic hit, Fiona was a 26-year-old living in New York City. They got sick around mid-March and soon became one of the first advocates for Long COVID.
Ryan Prior: Fiona wrote a story for the New York Times on the opinion section about being hospitalized and saying that, “Hey, I was 26 and I got COVID. It was so bad I had to be hospitalized.” They did not get better. So a few weeks later, wrote a story, for April 13th, 2020. The headline says, “We need to talk about what coronavirus recoveries look like.”… And so Fiona's stories were a galvanizing moment for the Long COVID community. Fiona had a WhatsApp group at the time, and just like hundreds if not thousands of people were being funneled into that WhatsApp group to talk about their recoveries. And that led to eventually creating a Slack group because the WhatsApp group got too big.
Ryan Prior: So there's some really important advocates in a number of different countries, and the book talks about important work, especially in the UK, that was going on. There's an Italian archeologist, Elisa Perego who coined the term long COVID, and there's really important advocates in Indonesia and Malaysia who contribute to the same overall global narrative. Arguably the most important advocate is a patient named Hannah Davis, who was an AI researcher in New York at the time, and Hannah was in her early thirties when she was infected.
Deboki: Hannah connected with Fiona’s Body Politic COVID-19 Support Group and then teamed up with them and other Long COVID patients who were also researchers in a variety of fields including neuroscience, cognitive science, and public policy, to form the Patient-Led Research Collaborative or PLRC. In May, 2020, using patient survey data, the PLRC published the first study of long COVID.
Ryan Prior: And then that led to Ed Yong, the science writer from the Atlantic who was tracing the story in his own way, he covered the story in early June of 2020.
Deboki: On June 4th, Yong, who later went on to win a Pulitzer Prize for his pandemic coverage, published an article for The Atlantic titled “COVID-19 Can Last for Several Months: The disease’s “long-haulers” have endured relentless waves of debilitating symptoms — and disbelief from doctors and friends.”
Ryan Prior: And that article is largely credited for having launched this idea of long haul COVID. And from my own vantage point, I knew that it was totally obvious that there was going to be long-term symptoms from this virus. But the classical way of doing science writing is that you would have to wait until an article comes out in a peer-reviewed journal and then write about that article and that it would take months to do the research to catalog the way that people were having these symptoms.
It would've to be done by medical researchers and not by patients. And then it would have to clear peer review, and then I'd have to convince my editor that we could write about it. And so although I knew this was going to happen, I didn't think it was really plausible to write about it until about six months into the pandemic. And so I was sort of marking my calendar for August, September to try to start pitching these types of stories. And so I was really amazed with Ed for capturing it and, even more importantly, amazed by the patients for having done the research themselves.
Sam: And these patients were not only collecting data on Long COVID. They were meeting with the CDC and WHO, founding startups, and pushing for much more research funding. One example of the latter is the Long COVID Moonshot, which asks Congress for an additional 10 billion dollars in Long COVID research funding over the next 10 years.
The hope is that, just as with the Cancer Moonshot, which began in 2016, the Long COVID Moonshot would more quickly push forward research and therefore treatments. Last year, organizers of the Long COVID Moonshot lobbied senators to have a hearing and, in January of this year, Vermont senator Bernie Sanders, who is the chair of the Senate Health, Education, Labor, and Pensions or HELP Committee, made it happen.
Ryan Prior: And it was really a great show of bipartisan support from every member of the committee, very collegial, one of the best hearings I've ever seen as not just a science reporter, but also as a political reporter. So then Bernie said that he was going to keep working on this, and he was determined to do right by long COVID patients.
Deboki: On April 9th, Senator Sanders released a draft legislative proposal for the Long COVID Moonshot. Ryan told us the final text of the bill should hopefully come out soon. There is even the possibility that it comes out right before this episode publishes. If the bill does pass, it will be an example of how a patient-led movement can create incredible change.
Ryan Prior: It really was the patients who had to call for that, and the specific way that our democracy is geared toward responding to the needs of regular people. I think it's really important for the Senator Sanders team and the Senate HELP committee team that's designing this long covid moonshot to include research from the ME/CFS field and from POTS and from chronic Lyme and from this overall view of what we call infection associated chronic illnesses. And you can move the entire block of these conditions together if you lump them together. I think it's not just about designing a Long COVID Moonshot, which is still incredibly important. It has to be about thinking about a whole class of diseases and how that actually changes the way we frame the model of human response to infection.
Deboki: Since 2006, Ryan’s symptoms of ME/CFS have almost entirely vanished. But it took many, many years for him to get here.
Ryan Prior: I do not take any medicines now except just melatonin to fall asleep. And so I think that's almost like a spiritual reawakening to sort of live in a body that doesn't have all these handicaps. And that took a very, very long time and took incredible patience. I had to endure many setbacks. I was working full-time at CNN for six and a half years, and during those six and a half years, I went on disability leave three different times and I would take a few weeks off. And that was actually a picture of great health compared to the rest of the ME/CFS community who couldn't work at all. Many of them are homebound or oftentimes bed bound. So I am pretty much a recovered patient. I try to run a few miles three times a week. I'm not the aspiring marathon runner that I used to be, but the fact that I can exercise is really a great gift and I can travel and speak and write and live a life of adventure and joy. And so that's a great blessing. So there's part of that where I'm continuing to be an advocate because this is sort of my core community that I've come from, and I do want to try to speak on behalf of people who don't always have the capacity to speak for themselves.
Deboki: Like we mentioned earlier, Abby is also beginning to feel a bit more like herself. She told us she’s very fortunate to have a supportive husband and family close by. And she has found ways of continuing her research as well as teaching, although it looks different than before she developed Long COVID.
Abby Koppes: With my work, what's really been impacted is my ability to be present all the time. So my job before would be teaching in person, being in the lab with my research students, my PhD students, every day being in my office every day just for those casual conversations. And I can't do that now.
So I ended up getting accommodations, which I recommend if you have Long COVID or some other disability that you talk to your doctor about this and see what might work. But basically I talked to my department chair, figured out what we could do, and I was able to get some accommodations that include working from home when I'm in a flare. And I also ask for accommodations in my classroom, which includes a chair. Seems like a really simple accommodation, but a lot of classrooms are like lecture rooms that just have a podium. I need a place to sit down. Sitting and standing can make a huge difference to me in terms of functionality.
Sam: Abby has also found ways to use pacing for both physical and mental activities. She has been going to cognitive rehabilitation therapy, working through what she says is similar to a post-concussion protocol for executive dysfunction. There, she’s learning skills that are allowing her to still do her job successfully.
Abby Koppes: There's a huge change in your life in terms of who I was before being sick in terms of being an athlete and then going from being an athlete to someone who can barely walk up the stairs without having a crash.
So just trigger warning, self-harm is a big conversation in this disease because of how severe it is and how much it impacts your day-to-day life. And I think that a lot of people are afraid to talk about that. So please don't be afraid to ask for help. Call the helplines if you need to talk to a doctor. I was having intrusive thoughts, which were new for me… I know I have brain inflammation and micro clots and these things that are being implicated now in Long COVID because I joined a couple of clinical trials that were testing for those things.
Not treating, but testing, which also gave me some agency. Being able to help and be part of those studies to help other people made me feel good. And I think that making sure you ask for help is important. So I was having these intrusive thoughts and I just was like, oh man, this is terrible. But I was scared to speak up, and I think, I hope that you listen to what I'm saying. If you're struggling in that way and you ask for help, because help can be there for you, whether it is therapy, family group work, support groups, or medication or the combination of them.
Michael VanElzakker: Long COVID is so front and center for so many people that it's pretty difficult to deny that this is a phenomenon that happens to some people. We're no longer at the stage where we're just trying to get people to recognize that this does happen to some people. Now we're really trying to figure out exactly what's happening in each individual.
Sam with Michael VanElzakker: And hopefully this ultimately ends up helping a lot of people who maybe for decades have felt like no one is paying attention.
Michael VanElzakker: I personally think it's going to end up helping Alzheimer's, multiple sclerosis, lupus, rheumatoid arthritis, like a whole bunch of conditions that are probably driven by viruses or pathogens, that this is going to sort of blow that up and we're going to figure out a lot of things that are currently considered mysterious.
Sam: I can't remember who goes first. Do you want me to go first? Do you want to go first?
Deboki: I can go first. Okay. So for today's Tiny Show and Tell, this is a story about Beethoven's hair. I think many people know Beethoven, over his lifetime, he went deaf, he experienced a number of different ailments, he also had gastrointestinal issues. No one really kind of knew why. And so, it's been this ongoing thing that people have wondered about.
However, there have been samples of hair that people thought belonged to Beethoven. And at some point, researchers realized like, "Hey, we can do the DNA testing now that we need to do to confirm that that's Beethoven's hair, and if it is, we can actually go look at it further." And so, they confirmed that some of these different locks of hair were actually Beethoven's hair.
And there was an Australian businessman who decided to send some of those locks. I guess he collects Beethoven's hair. I think he collects Beethoven memorabilia, and that includes his hair. So he sent some of these locks to the Mayo Clinic to get them to test for heavy metals, and they actually found a lot of lead.
So apparently, usually, hair has around four micrograms of lead per each gram of hair, one of these samples had 380 micrograms of lead per gram of hair. There's also a lot of arsenic, there's a lot of mercury. I guess some of that feels like kind of very of the times, but basically, what researchers were kind of taking from this is that lead might be a big factor in Beethoven's health issues because lead poisoning can lead to both gastrointestinal issues as well as nervous system issues, which then might've in turn affected his hearing.
And so then, of course, another question is where was the lead coming from? And this also led to some conjecture around the fact that, apparently, Beethoven was a big fan of wine. In cheap wine, during his time, would use lead in various ways. So one of them was lead acetate, which is also called lead sugar. It was also used to solder kettles together, so that might've gone into wines as they were fermenting. And then, lead salts might've also been used when you're pre-soaking the corks for the wine bottle.
So there's just a lot of ways for Beethoven to have gotten lead poisoning potentially through wine, so that was one of the reasons why they thought that that might be responsible. But yeah, I just thought that was a really interesting examination of old hair.
Sam: That's really cool. I mean, big bummer, but definitely the whole lead in wine thing. Actually, this is something that is... Do you remember a while back, I mean, maybe it's in the last year, I don't know, I'm so bad at keeping track, but the This Is My Roman Empire thing?
Deboki: Mm-hmm. Yes.
Sam: It makes me think of how there's this whole theory that the downfall of the Roman Empire was due to lead in wine and other things.
Deboki: Oh. Okay. I haven't read that theory yet, but now that's going to be my Tiny Show and Tell for next time.
Sam: If you're looking to learn a little bit more about it, you can literally watch me do a video on it.
Deboki: Well, I will come in next week with everything I've learned from you telling me about lead in the Roman Empire. And then, I will tell you about what I learned from you.
Sam: So my Tiny Show and Tell today is pretty tiny. So this is a really, really interesting, but tiny proof of concept study. It's a trial that was done with just 10 people, 10 women, and all of them struggled with obesity. And so, what these doctors did in this pilot study was they actually ablated or burned off a small portion of their stomach lining. And what they found was that by doing that, these women lost nearly 8% of their body weight on average, something like 20 pounds over the course of six months.
And you might be thinking, "Sorry, what is the connection between burning part of your stomach lining and weight loss?" And so, what they did was they actually were targeting these cells in the upper portion of the stomach that release a hormone called ghrelin. In the story, they call it a sort of a dinner bell for the brain, but it essentially sends your brain messages saying, "I'm hungry, let's eat." And so, if you're not getting as much of that ghrelin signaling, you are not as likely to eat.
It's an hour long procedure. They just use an endoscope, they put it down the patient's throat into their stomach. They do this thing called the gastric fundus mucosal ablation. They burn away this patch of tissue that lines the upper part of the stomach, and then, that destroys cells that produce this key hunger hormone, ghrelin.
The advantage to this, again, pilot study, but if it does really work and it seems to sustain beyond the six months, the advantage is that it's relatively straightforward. Takes less than an hour like I said. The side effects are actually really mild, so some nausea and cramping.
This is a huge difference when you compare it to something like bariatric surgery, which right now is the gold standard for obesity treatment. Bariatric surgery includes different techniques that will actually restrict the stomach size, which affects food absorption, but it requires hospitalization, sometimes, for days, many weeks to recover. It's really intense, not that this isn't. This is still...
If you're doing anything where you're burning tissue within your gut lining, I don't want it to come off as like, this is no big deal. But comparatively, it seems like the side effects are more minimal and it's easier and potentially safer, it appears, at least, at this point.
So yeah, this is early, but I just thought it was really fascinating and actually just so smart thinking about how can we do the most minimal thing possible to help someone and really focus on these very specific cells that produce this hormone.
Deboki: Yeah, that's really fascinating. Are there other treatments that also selectively burn off cells like this? Is that something we do in other contexts?
Sam: We do with people who have like heart arrhythmia, ablation is also used for that.
Deboki: Interesting.
Sam: So ablation is something that's actually used at least somewhat. And also, I should say that, right now, there are no drugs that actually target ghrelin. So that's another thing. This could be really beneficial because there isn't a drug that is available that could lower this hormones level in the blood, but we can directly target the tissue, so that is the alternative here.
Deboki: Wow, that's really interesting. Thank you.
Thanks for tuning in to this week’s episode of Tiny Matters, a production of the American Chemical Society. This week’s script was written by Sam, who is also our executive producer, and was edited by me and by Michael David. It was fact-checked by Michelle Boucher. The Tiny Matters theme is by Michael Simonelli and the Charts & Leisure team.
Sam: Thanks so much to Abigail Koppes, Michael VanElzakker, and Ryan Prior for joining us. We’ve left a link to Ryan’s book in the episode description. And, like we mentioned at the start of the episode, we’ve also left a bunch of links to long COVID resources.
Just as a reminder, soon we’re introducing a new bonus series called “Tiny Show and Tell Us.” Write in to tinymatters@acs.org with science news you’re itching to share, a science factoid you love telling friends about, or maybe even a personal science story. Was there a place, event or maybe teacher who sparked your interest in science? We want to hear about it! In Tiny Show and Tell Us episodes, Deboki and I will read your emails out loud and then go a bit deeper into the tiny science of it all. You can find me on social at samjscience.
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