Ryan Prior on the Covid-19 ‘Long Haul’

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CARLY PACHECO (HOST): From KVMR and in partnership with FREED, this is Disability Rap. 

RYAN PRIOR:  The fusion of science, and public policy, and really just the grassroots human experiences of disease all need to come together as we tell this larger story of the pandemic, and this time in human history, and the future of the disability rights movement. 

PACHECO: Today, a conversation with Ryan Prior on Long COVID, and how patients took the lead identifying the disease and advocating for answers.  

PRIOR: History books will view this as an important moment in how patients have taken control of narrative very similar to ways that this was done by Act Up. 

PACHECO: That’s all coming up on Disability Rap, stay tuned.  

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PACHECO: Welcome to Disability Rap, I’m Carly Pacheco. As the death toll from Covid-19 quickly rose throughout the United States and around the world in early 2020, many health officials, politicians, and media personalities had one clear message about those who contracted Covid-19: For those who didn’t die from the infection, it would be a simple respiratory illness and patients would fully recover in a matter of weeks. But for millions of people around the world, they didn’t fully recover after contracting SARS-Co-V-2; their symptoms lasted for months or years, often with no signs of easing up. This was not well understood by the medical community, and so it was patients who banded together, often online, to support each other and raise awareness of a condition that they themselves termed, “Long Covid.”  

This is the subject of a new book by our guest today, Ryan Prior. In The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever, Ryan documents the journey that people with Long Covid embarked on to advocate for recognition and understanding of this new condition in the medical community. He also shows how that advocacy was influenced heavily by those with another condition called Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. Writing from personal experience as someone who developed ME/CFS in high school, Ryan presents the similarities between ME and Long Covid, and how they are both generally misunderstood by the medical profession, and how patients themselves were often on the front lines of understanding their own conditions and educating their doctors. He also connects these patient-led movements to the Disability Rights Movement of the 1970s and 80s and continuing today and encourages the movements to unite around common goals.  

Ryan is currently a journalist-in-residence at The Century Foundation. He has been a health and science writer for CNN since 2015 and has also written for The Guardian, the Daily Beast, USA Today, STAT News, and Business Insider. 

Our Co-Host, Carl Sigmond spoke with Ryan last week.  

CARL SIGMOND (HOST): Well Ryan Prior, welcome to Disability Rap. I want to begin by asking you to briefly share your own story with ME/CFS. What is it? And tell us about your journey to accept this new condition you had.  

PRIOR: The story of my book about Long Covid and this, advancements of the disability rights movement past the pandemic begins in October 22nd, 2006 when I was a junior in high school. 

I was a cross country runner and a soccer player. I was 17 years old, I came home from school and slept for about 16 hours straight and did that again and again and again. And ultimately needed to drop out of high school altogether. There was, I did not have a diagnosis, but I was being treated at the time for mononucleosis, which presents with debilitating fatigue and it's a common condition among teenagers.  

But I never got better in the way the others do, within about four weeks or so, and I went, we went to about 16 different doctors for neurology, rheumatology, infectious disease endocrinology on down the list. And ultimately received this diagnosis of Chronic Fatigue Syndrome, which is also called Myalgic Encephalomyelitis. Myalgic Encephalomyelitis means a painful inflammation of the brain in the spinal cord. So there was a, it was a disease that In the wake of a viral infection that had affected my nervous system and my immune system.  

And I produced a documentary film about this disease after I graduated from college, and then as a reporter for CNN  frequently wrote stories about ME/CFS. And a lot of the cutting-edge science and molecular biology to try to understand where it comes from and how, how to treat it, and hopefully how to cure it, and really ultimately how to prevent it from occurring in the first place. 

 But we know this type of disease occurs after a range of different infections, which could be Lyme disease - bacteria that causes Lyme disease - or a variety of viruses from Ebola to Epstein Bar to now, SARS-CoV-2. So when the pandemic began in in early 2020 it was clear to me that this was gonna constitute a mass disabling event for probably tens of millions of people, just like what I had experienced in high school. 

And I'm fortunate to be able to have recovered, to being able to work full-time and to have a voice writing for a lot of national or international news outlets. And so I wanted to lend my voice and expertise, to interview a lot of the cutting edge scientists and a lot of these phenomenal people who changed the world. And so that was the other thing, this book and a lot of the work now with the Century Foundation.  

SIGMOND: There is this pivotal moment in the book - March 11, 2020 - on the night that President Trump is about to announce the national emergency for Covid. I want to ask you two questions. One: what was going through your head? And then two: what were you not hearing from our officials and politicians about your condition and how it might be impacted by this new infectious disease?  

PRIOR: What was alarming to me personally separate from my journal opinions as a producer or as a journalist, was that we were hearing a lot of rhetoric around this being a condition that would last for a week or two in most people, it, you know, it was probably gonna kill what we thought would be about 1% of the people who got Covid, and then for others they would get sick for a little while and then it would get better.  

But my experience, dating back to high school, was that I had developed a post-viral syndrome and had never really fully recovered. Although I was, I would say mostly recovered, I was lucky to have gotten to where I was with, with ME/CFS but I had been involved in the advocacy movement for so many years that I knew that just the nature of human biology and the nature of how viruses affect us is that these post viral syndromes almost always develop in probably about 10% of the people who get sick. And this is part of the disability world that oftentimes doesn't get highlighted. And me being immune compromised, and just knowing so many other people through advocacy, not just around ME/CFS, but around cancer and diabetes and multiple sclerosis, and people with a lot of different diseases and disabilities who were immune compromised, I was incredibly worried about what was gonna unfold for me. And I was also worried about the tens of millions of people around the world who were going to get Covid, going to survive it, then who are gonna be left with these long term effects that our medical system was not prepared to address. 

And so there wasn't any rhetoric at the time. You know, and in the book I highlight some speeches from President Trump and Vice President Pence, but that you could have those same speeches from a whole bunch of different public health officials and, and political officials that these long-term effects that will become Long Covid were simply not known by the mainstream medicine at the time. And that was where I knew that a lot of my reporting needed to go.  

And so when I started, you know, working from home as, as a features writer for CNN and, on the science scene, I made a, a point as quickly as possible to start reporting on the human side of the pandemic and these long-term effects that by April or May there have been people who had been sick for two months, three months. And I was you know, dedicated myself from looking at those voices. In particular. 

SIGMOND: And then in December of 2020, you get Covid. Again, what was going through your mind when you tested positive, given that you had written almost a year reporting on these cases? What went through your head when you tested positive, and then on a personal level, what was Covid like for you?  

PRIOR: In December, 2020, at that point, we were probably about nine months or so into the pandemic. And I had interviewed probably more than a dozen Covid Long Haulers and read reports of dozens more. And I'd been working on a number of different stories and had been interviewing scientists about all aspects of Covid.  But I had a special interest, of course, in the long-term disabling effects that so many people were having.  

So when I first got COVID was around Christmas Eve of 2020, and I had written a book proposal and we, my agent and I, had circulated that to publishers mostly in New York City, and we had an offer from the publisher that we were thinking about going with. And I made a comment to my agent. I was like, oh, this is gonna be so good for the book, I just got Covid. I can bring some of my own personal experiences into it. And she wrote back and said, you know, this isn't good at all. Like, you know, you, this could be really, really serious for you. And unfortunately it did end up being really, really serious. And it really was probably the biggest threat to me being able to write the book in the first place was the fact that I got sick with Covid.  

And we had the delay signing the book contract for a couple months because I was, honestly, I was too sick to be able to have a phone call with the editor to, you know, finalize the contract. I was experiencing a lot of the severe, severe fatigue and brain fog and post exertion malaise and headaches and overall dysautonomic system symptoms. The inability to regulate sleep cycles and, and the like. I was just experiencing exactly what some of the other Covid Long Haulers were facing. And a lot of my reporting at the time, and what most of what was available, you know, showed that Long Covid was a, a significant disease that lasted for months and months and months and that there weren't really any great treatments. So I was at the, I was sort of living the story.  

And I make my living in the written word, so reading complex news, complex scientific studies, interviewing a lot of medical professors, and interviewing lots of patients and lots of just people across the spectrum of whatever is going on in the news cycle. So I have to read and write constantly. And what happened in particular with me, I would, I had a very hard time sitting up straight, and went on short term disability. I had a very hard time processing any information of any kind, and it was incredibly horrifying to me that I might lose the ability to read and write, at least to read and write complex things about major national news topics, and being able to do that on deadline. And I worried that I was going to lose my career altogether, because I knew how bad it had been in high school for me, and I knew how bad it was for people with ME/CFS and how bad it was for everyone dealing with Long Covid.  

But I think one just really important point to make here is that the fusion of science and public policy and really just the grassroots human experiences of disease all need to come together as we tell this larger story of the pandemic, and this time in human history, and the future of the disability rights movement. But the voices of people who are living out the condition day to day are the ones that need to be centered, and are the ones that I think are ultimately gonna help affect the political change that can lead to more science being done on this condition, and then hopefully leading toward a cure. 

SIGMOND: And you chronicle in the book this group on the social media platform Slack, called The Body Politic, and you say it was a critical place for patients to come together. Can you tell us a bit about that and the power that they gained by coming together?  

PRIOR: Sort of the most direct way to get into this story about Long Covid is to tell the story of the group of patients who first noticed it and, and named it, and ultimately started researching it really in the first couple months of the pandemic. And so in this book that I tell a story of Fiona Lowenstein, who was the founder of this group called The Body Politic. That had really been created as a Feminist Health Collective before the pandemic, for a bunch of different purposes that were, you know, totally not Covid related. But Fiona gets sick with Covid and stays sick for weeks afterwards and notices that a lot of other people are experiencing the same thing. 

 So they start a group on WhatsApp at first, and are just getting hundreds, if not thousands of people trying to join this WhatsApp group to discuss the lingering symptoms that they are confused by, befuddled by, and don't really understand. And from there, they migrate that group over to Slack after Fiona publishes a second op-ed in the New York Times that galvanizes a lot of attention. 

And it's about a month into the pandemic and people who've gotten sick enough that very first wave and aren't getting better and are desperate for answers, they all funnel in into this Slack group. And so there's thousands of people joining the Slack group called the, you know, The Body Politic, basically overnight. So you've got this huge pool of Covid Long Haulers basically before, you know, the word Covid Long Hauler has even really appeared much in the national media. They're all coalescing in this, in this online space. And that's really important, this is this is all occurring in real time using social media. 

So this would've never happened in the, in the 1980s so quickly. But there are all these people with the same common human experience who are struggling for answers, and many of them have incredible expertise in public policy or neuroscience or data, you know, or data scientists or experts in artificial intelligence. And so they're seeing that all these people are posting all these useful pieces of information. And they, so they, they create a survey, to organize and coalesce all this information all in one place. And that survey becomes part of what's called the Patient led Research Collaborative. 

And this, this is a group that still exists, you know, is, is actually now, well, very well funded years later. And but the, the emerging moment here that the it's patient to identify the disease, name the disease, and they produce this first research. And that research gets recognized by the National Institutes of Health, and by the CDC, by the UK Parliament, and many different countries all around the world are all looking to this patient-led group to explain to them what Long Covid is. Because they're getting all of the firsthand information, anecdotal and subjective, and they're translating that into rigorous data that is objective, that can be used for policy makers in any government, in any scientific research agency. 

So what they achieve here is what many experts consider to be a cutting edge, pioneering, historic achievement by this, you know, patient-led researchers who are really the, the newest generation of disability activists. And so I think what we will see, what history books will view this as an important moment in how patients have taken control of narrative. Very similar to ways that this was done by ACT Up during the, you know, the most previous significant epidemic, which was, which was the HIV/AIDS epidemic a generation before. This new generation of health activists during this new pandemic has shown a new way of doing science. And I think this will be historic, not just for you know, political history, but really for scientific history, about the nature of what research is, and how we can include people with lived experience in the research process.  

SIGMOND: What can our movement, the Disability Rights Movement, learn from the ME movement, and now the growing group of people with Long Covid? 

PRIOR: There's a number of things that the ME/CFS movement and the Long Covid movement can learn from the Disability Rights Movement, and there's a number of things that the Disability Rights Movement can then naturally draw on from the recent occurrences and, you know, pioneering of the science and the overall like identities of this new group, Covid Long Haulers. One of the things I think that's really important is that there has always been this group of people with these invisible disabilities, which could be ME/CFS or chronic Lyme or, or Long Covid, it could be fibromyalgia or Ehlers Danlos syndrome or POTS, you know, many more that I’m not listing here. That all of these are diseases that may, the person might not be in a wheelchair or might, may not present as being obviously disabled, visually. But the person is dealing with a disease that prevents them from living what, you know, I consider a normal life. It prevents them from being able to work full-time or being able to access medical care or being able to care for their children or being able to play sports or travel or any of these other activities of life. And so the invisible disabilities are now being thrust into the spotlight in a way that they have never been before. 

So when we talk about this as a mass disabling event, this new group of millions of Covid Long Haulers who would be welcomed with open arms into the disability rights community. Because people have fought for a generation, or for generations, for disability rights. And that and in the same way that all of human rights matter, which would be, you know, civil rights or women's rights or gay rights or disability rights are a key pillar of the human rights agenda. And this number of new Covid Long Haulers, in my opinion, injects new power into the disability rights movement in a way that would not have been seen before.  

So, Judy Heumann is largely believed to be like, sort of the mother of the disability rights movement. She is a post-Polio survivor. And then so in the 1950s, Polio was kind of the, the most serious infectious disease, and Judy and the number of people with post-Polio syndrome were pioneers of the disability rights movement. And so you skip forward, then you go to the HIV movement in the 1980s, and now this new movement around Covid Long Haulers in the 2020s. With each new generation of epidemic and pandemic you have a pandemic of, I'll call it a ‘pandemic after the pandemic’, the survivors who live with the long-term effects of, of that infection.  

And as we think about public health, and then we think about, you know, pandemic resilience as a, not just as a human rights argument, but really as a national security argument, that we really need to have policies in place to deal with the mass disabling effects of these diseases. That this also can be used as a way to advance legal rights and human rights and a broader policy agenda around disability. 

That one in about one in four people experience disability, live with a disability every day. And also from there you can see that every one of those people has family members who may not be disabled themselves, but who end up being directly affected by disability. Which is all to say that disability is a universal part of the human experience. We'll all be disabled at some point in our lives. Maybe if we're not long-term disabled, we'll certainly be short-term, disabled. And how we think about the human experience of, how we reckon with suffering, and how we reckon with the fragility of the fact that our bodies are going to decay and die sooner or later. And we are going to live with set of human experiences that might lend insight into the rest of how society operates. So, I think when we talk, we think about it in these universal terms, about the nature of suffering and the nature of human rights, Covid Long Haulers are a pivotal part of that story. 

One of the most important points here in this post-pandemic world that we are basically entering into is that disabled workforce participation greatly increased during the pandemic because remote work options were so much more common. Everybody was working from home. And as we enter into a new world in which we wanna make it more accessible and equitable and empathetic for everyone, remote work is one of the easiest and best ways to use technology to enable a much larger amount of the population to participate in the culture, and have their voices heard. 

PACHECO: That was Carl’s interview with CNN reporter, Ryan Prior, currently a journalist in residence at The Century Foundation. His new book is called The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever.  

And that does it for this show. Disability Rap is produced and edited by Carl Sigmond. Courtney Williams is our production assistant. You can go to our website, disabilityrap.org to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching “Disability Rap” on any of the major podcast platforms. We’re brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Carly Pacheco for another edition of Disability Rap.  

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