July marks the thirty-second anniversary of the Americans with Disabilities Act, or ADA, as it’s better known—the landmark civil rights law that promised equal opportunity and economic security for Americans with disabilities. As we’ve talked about a lot on this show over the years, as important as it is to celebrate how far we’ve come in the decades since the ADA became part of the fabric of American life, every time we hit the month of July, it’s even more important to acknowledge how far will still have to go to achieve the as-yet unfulfilled promises of the ADA. 

And that’s why this July, Off-Kilter will be spending all month long having conversations with leaders from across the disability community—starting with a two-part special diving into the picture for the millions of Americans now living with “long COVID,” the incredible patient advocacy led by COVID long-haulers across the country, and how patient advocates with other chronic illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are teaming up with COVID long-haulers to push for research, policy change, and more.

And for part one of that two-part series of conversation, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative; Netia McCrery, education director at the COVID-19 Longhauler Advocacy Project; and Ryan Prior, a journalist, a board member of ME Action, which works to build awareness about a condition called ME/CFS, and author of The Long Haul (forthcoming November 2022). They talk about their personal illness journeys, the stories behind their respective organizations, why patient advocacy is more critical than ever, and take on some of the myths and misconceptions about long COVID and ME/CFS and more. 

Editor’s note: The Century Foundation is thrilled to have all three of those organizations—the Patient Led Research Collaborative, the COVID-19 Longhaulers Advocacy Project, and ME Action—as members of the Disability Economic Justice Collaborative, which you can learn more about at dejc.org. 

For more:

[bright theme music]

REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. July marks the thirty-second anniversary of the Americans with Disabilities Act, or ADA as it’s better known, the landmark civil rights law that promised equal opportunity and economic security for Americans with disabilities. As we’ve talked about a lot on this show over the years, as important as it is to celebrate how far we’ve come in the decades since the ADA became part of the fabric of American life, every time we hit the month of July, it’s even more important to acknowledge how far we still have to go to achieve the as-yet unfulfilled promises of the ADA.

And that’s why this July, Off-Kilter will yet again be spending all month long having conversations with leaders from across the disability community, starting with a two-part special diving into the picture for the millions of Americans now living with long COVID, the incredible patient advocacy led by COVID long-haulers across the country, and how patient advocates with other chronic illnesses like ME/CFS are teaming up with COVID long-haulers to push for research, policy change, and more.

And for part one of that two-part special, I sat down with Lisa McCorkell, co-founder of the Patient Led Research Collaborative, Netia McCray, education director at the COVID-19 Longhauler Advocacy Project, and Ryan Prior, a journalist, board member of ME Action, which works to build awareness about ME/CFS, and author of The Long Haul, forthcoming in November 2022. We talk about their personal illness journeys, the stories behind their respective organizations, why patient advocacy is so incredibly critical, especially in this moment, and we take on some of the myths and misconceptions about long COVID, ME/CFS, and more.

On a personal note, I just wanna say that The Century Foundation is thrilled to have all three of those organizations—the Patient Led Research Collaborative, the COVID-19 Longhaulers Advocacy Project, and ME Action—as members of the Disability Economic Justice Collaborative, which you can learn lots more about at DEJC.org, and you can find out more about each of these organizations and how to get involved in their work in show notes. Let’s take a listen. [upbeat music break]

Lisa, Netia, Ryan, thank you so much to all of you for taking the time to join this sort of extra special edition of Off-Kilter.

RYAN PRIOR: Thank you for having us.

NETIA MCCRAY: Thank you for having us.

LISA MCCORKELL: Thank you so much for having us.

VALLAS: Wonderful. Well, there’s a lot that we’re gonna get into, and I’m really excited that this is actually going to be a two-part episode to really kick off July as the month when we mark the anniversary of the Americans with Disabilities Act. As I noted up top, we’re marking 32 years of the Americans with Disabilities Act being, or ADA, being the law of the land in the U.S. But of course, this is a conversation every year about, yes, how far we’ve come, but also how far we still have to go. So, very excited about an entire month of conversations on Off-Kilter about how far we still have to go and what folks who are really leaders across the policy sector are doing to get us there in a range of different ways. So, I’m really excited for this as the first conversation in that series and the first of a two-part series itself on long COVID.

So, before we get into the subject of today’s conversation, I’d love to give, as I often do on this show, an opportunity to each of you to introduce yourselves a little bit and to talk a little bit about how you come to this work. Obviously, for each of you, how you come to this work also includes your lived experience with chronic illness, long COVID, in the case of Ryan, ME/CFS. We’ll talk about all of that, but I’d love to sort of do a quick round robin and give each of you the chance to say here’s who I am pre-COVID era and pre-pandemic and a little bit of who I am outside of what we’re about to be talking about. So, Netia, I’m gonna start with you.

MCCRAY: Oh, wow. Okay! So, to start off with, my name’s Netia McCray. My pre-COVID identity was solely as an executive director of a STEM or a science, technology, engineering, and mathematics non-profit called Mbadika, and my work week revolved around showing kids that anything that you wanna bring to reality, you can utilize science or engineering to do so. And that included doing hands-on workshops, managing an organization. I was creating digital content as well as do-it-yourself kits and toys for kids, as well as a TV show. And I would say that was my pre-COVID life before late-March 2020, when I suddenly went to the bathroom because I felt kind of a tightness in my chest, and I blacked out. And that was the last time I can say that was the only hat that I would wear.

Now I find myself not only as an executive director of a STEM non-profit, but also as a patient advocate with C-19 Longhauler Advocacy Project, where I spend my time balancing the two and utilizing my science communication skills to make sure people know what long COVID is, what they can do to prevent it, and if they just so happen to be one of the unlucky numerous Americans like myself, what they can do to manage.

VALLAS: Well, and Netia, thank you so much for that, and I love sort of how you laid that out. I feel like that’s a really good starting point to get into a lot of this conversation. Lisa, I’m gonna turn it to you next with the same question, and then I’m gonna stick with the two of you for a little bit before we bring Ryan in. So, Lisa, over to you next.

MCCORKELL: Yeah. Thank you. I am Lisa McCorkell. Before COVID began, I was just finishing up my graduate degree in public policy in the Bay Area, California, and my goal at the time was to work on social safety net policy, largely because I had seen the ways in which those types of policies were important for ensuring stability for people in my family and community and also the ways in which it did not serve everyone. And I was also at the time an avid runner, loved going camping and being outdoors. And yeah, that was kind of the pre-COVID Lisa, which a lot of her is still remaining. But now I would say my biggest hat is as co-founder of the Patient Led Research Collaborative.

VALLAS: And I’m so excited to get to talk about what both of those organizations are doing and really the importance of patient advocacy in a moment like this, but really even outside of pandemic moments as well. And I know, Ryan, that’s a lot of what you’ll bring up and talk about as well with ME Action, which is one of the hats you’re wearing with us today. But sticking with Lisa and Netia, both of you for just a moment here to sort of start the conversation with the long COVID perspective. Lisa, staying with you for a moment, would you talk a little bit about the experience of when you first got sick and then when you ultimately began to suspect that you might be experiencing something that was more than a standard case of just a viral infection?

MCCORKELL: Yeah, absolutely. So, my first day of symptoms was March 14th, 2020, so very early on. I think it was a couple of days after that was when many cities in the Bay Area went on lockdown. And my illness for the first couple weeks was fairly mild. So, I didn’t require hospitalization. I didn’t have the three kind of standard symptoms that you needed in order to get a test for COVID. So, at the time, that was cough, shortness of breath, and fever. So, I didn’t have a fever, so I couldn’t get a test. And I was living in a house of six people at the time. I did my best to isolate. Miraculously, none of my roommates got COVID. But yeah, it was, you know, even the mild case at that time did not feel mild to me. It felt pretty bad. But I knew that I just needed to kind of stick it out, and the government and media was telling me that I would get better within a couple weeks. So, just needed to wait a bit longer.

So, I’d say after about 3 to 4 weeks of not feeling better, and instead, actually feeling substantially worse, that was really when I was realizing my experience is not lining up with what everyone is telling me it should be, and there’s not really any media coverage on this. I’m feeling like my experience is very different than what other people are experiencing. And this was a time where basically, I would try to walk down just a block, just a few steps, and that would make me bedbound for the rest of the day. I would have extreme shortness of breath. I would be really dizzy. I would just have these exacerbation of symptoms that I didn’t know what was going on at that time. And it wasn’t until Fiona Lowenstein wrote a New York Times op ed in mid-April of kind of their experience of a very similar trajectory of illness and symptoms as what was happening to me, and that was when I first realized, oh, this is not just something that’s occurring to me. It sounds like this is something that’s happening to a lot of people.

VALLAS: And Netia, I’m gonna ask you the same question. And I imagine that there are some similarities and maybe some parallels, but everybody’s journey is obviously unique. How did things play out for you when you first got sick?

MCCRAY: I think for me, what’s scary looking back two years on is how similar my story is to Lisa’s. So, for me, I didn’t get sick mid-March. I got sick late-March because I just woke up, went to the bathroom, was like, huh, that was weird. Maybe it’s just pandemic-induced anxiety. And I brushed it off for a day or two until the shortness of breath hit me, and I heard my partner come down the stairs as soon as I realized my body was almost starving for oxygen every time I had to sit up. And I heard my partner come down the stairs, and he was coughing. And that’s when it clicked to me. It’s probably not anxiety. It’s probably not burnout from everything that happened those last two weeks of March in the Boston area. This is something I need to check out. And it took me about a week in order to get a COVID test, because I, like Lisa, didn’t present with the typical symptoms. I didn’t have a cough, I didn’t have a fever, and I didn’t have my lips turning blue because, news alert, I’m an African-American female. And they kept looking for my lips to get blue, which wasn’t really possible [laughing] at the time. So, I didn’t present any of the hallmarks of what was being communicated as signs of a COVID infection.

And so, based on what I was hearing in the news media and based on a couple colleagues I knew who were working the front lines at hospitals around the world, I decided to just stay home and try to tend to it the best I could. I think the turning point for me was week three or four, where I got markedly worse to the point that we were pushing for hospitalization at that point because the shortness of breath was becoming so dire that every morning I would wake up, it was almost as if it was a new day and a new battle just to get enough oxygen to make it down one flight of stairs to go get breakfast. And I remember in mid-April going, am I just weak? Am I just a drama queen? Because there should be enough people going through this that something should be proliferating the Internet or the news media about there’s some people two weeks on suffering from these symptoms from a suspected or confirmed COVID infection.

And I think it was an article, just like Lisa, that made me realize I’m not [bleep]. In my case, it was Ed Yong’s Atlantic article about this new phenomenon called long COVID. And I was reading this article because it was at the time that in the few hours of consciousness I had per day—because by May, I was only able to be awake for maybe three or four hours a day—and in those spare three to four hours, I was dedicated to combing the Internet to see if there was any unusual patient experiences or unusual cases regarding COVID infections that looks like mine. And that’s when I came across that article. And I can tell you, I cried reading that there wasn’t just me going through this and that it was increasingly becoming a very common phenomenon. And it was unexplained. No one knew why certain people weren’t recovering within two weeks.

And I remember sharing it with my partner and him reading it and going, “Oh! No, this is completely you. This is exactly what we’ve been going through the past eight weeks.” And I think that’s the key important moment that I wish policymakers, patients, patient advocates, and medical providers realized, was that most of us couldn’t pinpoint what was going on with us because COVID-19 was so new at the time until it was communicated to us, “Hey, it’s not just you.” And that’s what I feel empowered or emboldened this movement of people starting to share their experiences and realizing this wasn’t a one-off. And what we now see as long COVID being recognized and movements such as Lisa’s Patient Led and C-19 Longhauler Advocacy Project being able to turn patient experiences into actual real-life change.

VALLAS: And that’s exactly where I wanna go with this conversation. I wanna stay with your individual experiences for just one more moment before we get into some of the stories behind the Patient Led Research Collaborative and behind the C-19 Longhaulers Advocacy Project just because I’m so grateful to both of you for being willing to be vulnerable and to share personally. I feel like very often in the national conversation around long COVID, people jump right to the numbers, right to the national policy implications, and we wanna have that conversation, too. But very rarely is there actually a conversation about the human implications, the how this plays out in someone’s life, right? And that’s part of why I’m so incredibly grateful to both of you for being willing to share in this way along those lines. Lisa, I’m gonna turn back to you and ask and really, I’ll ask both of you, but Lisa, you first. If you would be comfortable sharing what maybe has been the scariest or most memorable moment in your illness journey or any learnings that you wanna offer as we stay with the personal first.

MCCORKELL: Oof! Yeah, [laughing] that’s a tough question. There’s been too many scary moments. I think that the one that probably comes to mind the most and has had a big impact on both my personal experience and also just advocating for other patients was August 2020, so a few months after I got sick, I had started feeling a little better. I had learned a little bit how to pace myself from people with ME. And so, I was doing a little better, but didn’t fully understand my limitations or what my illness was about. And so, I had overexerted myself. I did a few exercises that were just way too much for my body. And following that, I experienced extreme tachycardia, palpitations, dizziness, shortness of breath. I really felt like I was going to die. And so, I went to the E.R. And clearly this is like still an emotional…still an emotional experience and unfortunately happens to so many people. But I went to the E.R., and the doctor who saw me told me that my symptoms were anxiety and sent me home without treatment. And I think that last part was the one that really got me, because those symptoms could’ve very well been from anxiety. They turned out not to be. They turned out to be POTS or postural orthostatic tachycardia syndrome. But it’s sending home without any type of treatment or referral when a patient is experiencing such extreme symptoms.

So, I think that experience was one of the scariest because of not only the symptoms I was experiencing, but also this realization that, like, oh, I’m alone in this. I thought that providers were going to help me through this, and it’s very clear that I can’t rely on all health care providers. And so, it took a lot of time following that experience to build trust with medical providers. It still is a very tough experience to go to the doctor. I’ve fortunately found a great primary care provider who believes me when I say what symptoms I have and is supportive of all of my diagnoses and of my symptoms.

In that moment, I turned to the support group that I joined, the Body Politic COVID Support Group. I went through the resources that the community posted and really learned through the online community what those symptoms were and how to better manage them. And this is something, an experience that is not unique by any means. And my experience was probably pretty mild and not as necessarily traumatic as many other people experience, and it still pushed me away from really receiving health care in the future and made me hesitant to seek that out. Because if I’m not going to receive treatment for my extreme symptoms, then why put myself in that situation?

So, I think, I mean, what I learned from there is really to educate myself as much as possible on my symptoms and to find providers that really believe in what the patient is reporting. And I think it’s led me to a lot of this advocacy on educating providers and ensuring that even if the diagnosis is anxiety, if it is a mental health condition, that those also deserve, those need treatment as well, and patients should not just be dismissed and told to go home with these extreme symptoms.

VALLAS: Yeah, the, “It’s all in your head conversation,” right, with the provider can be one of the most traumatic experiences that a person with an invisible illness, chronic or otherwise, can ever experience. I’m so sorry that you went through that. And I also suspect that this episode is going to feature more conversation that Netia and Ryan may be adding to as well that brings in some of those other experiences, too. Because as you note, it is unfortunately common and not limited to long COVID either. Netia, I’m gonna bring you in on the same question if you’re comfortable sharing, as Lisa just did.

MCCRAY: No worries. And I’m gonna say here, this is another reason why hearing patient experiences is so important, because me and Lisa are on opposite sides of the country, and yet at the same time frame, the same thing happened to both of us. In summer of 2020, I had a cardiac event that we now believe was a heart attack. So, pretty severe symptoms. It was confirmed on various tests that I had a heart attack, and the nurse who was overseeing me at the E.R. basically was like, “Yep, it’s a heart attack. We want to keep you in for observation.” And I was like, finally, this tachycardia I’ve been experiencing, my BPM, or beats per minute or heart rate, was almost 200 at this point, and it was quite clear that I was a clear cut and dried case of a heart attack. But having a physician come in and go, “No, it’s not a heart attack. It’s chest inflammation. She just needs to go home and take a Tylenol.” And he immediately dismissed me from the hospital and sent me home not even with a sample pack of Tylenol was also my first moment of okay, it’s not just my primary care physician not knowing what to do, it’s the whole system not knowing what to do. And I’m truly alone here. Ugh.

I would say that was probably [sighs] the most unusual moment in my journey until October of 2021. And at that point, I was about a year and a half into my long COVID and thinking this couldn’t possibly get worse. Like, I’ve already sacrificed and lost so much already in terms of my independence, my ability to do things physically and mentally because of long COVID. And I thought, there’s nothing else this disease could throw at me.

But on October 2021, I remember waking up, and waking up had become an issue for a couple of weeks at this point. It seemed it took so much energy for me to open my eyes and get out of bed, and I couldn’t understand why my body felt like it was drained of energy before the day even started despite having a pretty good night of rest. And at the time, I was staying with my mother, who was looking after me and making sure my recovery was going well. And typically, my niece who’s three years old would come into the bedroom where I was at, and she would wake me up and make sure I was doing okay and I took my medicine, as she would like to say, every morning because it made her feel like a grown-up looking after her aunt. But this particular morning, I woke up. And it usually took me about an hour from when I’m actually conscious to be able to open my eyes, and my niece knew this. My niece came in, and that particular morning, I opened my eyes and looked at her, and she said, “Good morning!” And I started crying, and not crying because I was scared of what my future looked like or anything like that emotional, early morning [laughs] wake ups. I was crying because I was scared ‘cause I didn’t know who she was.

This was someone I had lived with for over six months at this point, going on a year, with a very distinct face and voice that woke me up every morning during that time. And that was the first morning I woke up and didn’t know who was in my face. I knew she was a child. I knew she wasn’t a threat to me. But I couldn’t figure out who she was to me. And I don’t know what my face looked like, but my niece looked at me, and she ran to my mother. And she said, “TiTi’s scared, [voice shaking] and I don’t think she knows what’s going on.” And to have family members who’ve gone through dementia and Alzheimer’s disease and being on the other side of that for the first time in my life and realizing there’s way, way more things that this disease can take from me? If it could take away my memory, what else lies in this journey, and what other ailments and conditions lie ahead not only for me, but other people going through this after we’ve, after all we’ve gone through thus far?

And so, for me, that was the scariest moment of my journey, was realizing the months and years of neglect and no treatment options and having to fend for myself may have led to me developing a condition that is irreversible. I’m thankful that now I’m doing better because after that incident, my doctors took me seriously because then they started ordering tests and realized, “Oh. Wow! Now the damage is showing up on our traditional examinations or traditional scans.” While before, it was just me being a type-A personality who used to be an M.I.T. graduate leading a non-profit who just didn’t understand that I wasn’t the top dog in my field anymore and needed to learn more coping mechanisms to deal with being #2 versus having a physiological condition.

And while that moment’s the scariest, I’m very thankful for that moment because it was the first time that I realized truly 100 percent, it is not because of your ego, it is not because of anxiety, it is not because you’re in a pandemic, it’s not because you haven’t seen or talked to people or you haven’t gone to the movie theater, Netia. [clicks tongue] It’s because something is physically wrong, and you need physical solutions for it.

VALLAS: Just a huge thank you to both of you for being willing to share that kind of vulnerability and to share that level of your personal experiences with this illness and the illness journey that you’ve both been on. I wanna stay with both of you for one more moment, and then we’re gonna bring Ryan in. But I feel like that’s just such a good segue into asking each of you to tell the stories behind the patient advocacy projects that you’re both part of the driving forces behind. The Patient Led Research Collaborative, Lisa, you are one of the co-founders of that initiative. The COVID-19 or C-19 Longhaulers Advocacy Project, Netia, you’re the education director there. I’m gonna ask each of you to just briefly tell the story behind those organizations and how they came to be, how you got involved with them. Because obviously, that’s really the next part of this story. And Lisa, I’ll go to you first and then to you, Netia.

MCCORKELL: So, the Patient Led Research Collaborative formed out of the Body Politic COVID Support Group back in April of 2020. So, a lot of us had seen Fiona Lowenstein’s article in the New York Times, and Fiona had created this support group. So, thousands of people who were experiencing these prolonged symptoms from COVID joined the support group trying to find answers, trying to find community. And it became very clear to many of us who had had kind of a research background in some sense in our pre-COVID life, that there was a lot of information being shared and a lot of symptoms being shared, potential treatments, just kind of what everyone’s experience was, and we wanted to find a way to collect all of these and see if there were any trends and just kind of be able to see if there was anything in common between all of us and all the experiences that people were sharing.

So, we put together a survey and surveyed the support group, and that resulted in what ended up being the first research on long COVID. This was published or just posted online as a Google Doc in May of 2020, so, very, very early on. And this was, you know, we documented, at that time, we documented about 60 symptoms that people were experiencing, many non-respiratory symptoms at the time. There was a large focus on respiratory symptoms as being what COVID was. We found a lot of neurological symptoms. And we also heard what both me and Netia have experienced, which is this dismissal from providers and this dismissal from loved ones of what our symptoms were. So, that was really the birth of Patient Led Research Collaborative. We have grown since then. We’re now a group of about 45 people. We all have long COVID or an associated condition, so, ME/CFS, dysautonomia. We have a variety of backgrounds from policy like me to machine learning, participatory design, neuroscience, and we’ve continued to conduct patient-led research and advocate for supportive policies for people with long COVID and other post-viral illnesses.

VALLAS: And Netia, there’s some similarities, but again, some differences in terms of the advocacy project’s story. Talk a little bit about how it came into being and how you got involved.

MCCRAY: Sure. So, C-19 Longhaulers Advocacy Project came from the same vein in the sense that there was a lot of patients trying to figure out what was going on with them, and they were communicating online saying, “Hey, is anyone experiencing this? Hey, is anyone experiencing that?” And Fiona and Body Politic did an amazing job of creating a space for all those voices to get together. C-19 Longhaulers Advocacy Project is a project that was founded and led by Karyn Bishof starting in June 2020, and it focuses on COVID advocacy, education, research, and support for long-haulers or those afflicted or who care for long COVID patients. And one of the things about C-19 Longhauler Advocacy Project that I enjoy and what drew me to the organization when I was looking to see what can I do and share my skills in science communication to help in promoting long COVID knowledge and actual support for those suffering from long COVID, was the fact that C-19 Longhaulers Advocacy Project was involved in the drafting and development of Representative Ayanna Pressley’s Treat Long COVID Act. As a constituent of Ayanna Pressley, or Representative Ayanna Pressley, I was like, oh! They’re already doing work with her? Oh, let me figure out what this organization was about. And that’s how I came to become involved in C-19 Longhaulers Advocacy Project.

And for me, one of the things that I foolishly didn’t piece together was the same skills I utilize to break down science, technology, and engineering for my students—or learners of all ages, as I call them—by demystifying it and showcasing that it’s not that complicated, you probably know a lot of key principles and concepts just from everyday life. Let’s just apply those to something unfamiliar and make it familiar, or “managing the chaos,” as my students like to call it, through STEM. The same thing applies when it comes to any health care advocacy work, because what we’ve seen with long COVID is that it’s just created chaos and havoc in people’s lives, especially because they don’t know what’s going on with them. And so, my role with C-19 Longhauler Advocacy project is to help people understand what the chaos is in their lives and at least be able to gain that understanding in order to reduce their fear and turn their fear into management and control of what they’re going through.

But at the same token, that’s not possible without collaborating with folks like Patient Led and ME Action. Because if anything has become abundantly clear, regardless of how you figured out or came to the realization about long COVID, long COVID is affecting millions of Americans or millions of people around the globe. And it takes on various skins or various forms or manifestations. And we need to figure out a way to approach it from all angles to make sure we can provide people with the support and help they need.

VALLAS: Well, there’s a lot more to come back to in terms of talking about what patient advocacy looks like and what organizing folks who have experienced and are experiencing long COVID looks like and how you two and lots of other folks are using your voices to educate policymakers to speak up about the needs of long-haulers. I wanna come back to that, but here’s where I wanna bring Ryan into the conversation.

So, Ryan, thank you for being with us for this recording as well. And part of why I wanted to have you in this conversation and part of why you were actually part of the brainstorming behind this two-parter—and you’ll be part of the next episode as well—is because it’s sort of hard to have a conversation about long COVID in this moment, this moment when we’re seeing the largest influx of new entrants to the American disability community in modern history in the form of millions and millions of people with long COVID, so many more stories like what we’ve been hearing from Litia, from Lisa and from Netia. I just combined you there and made you into Litia, which is like your own Bennifer there. You’ve become, you’ve merged as a person, ladies. I don’t know if you saw that there.

MCCORKELL: [laughs]

VALLAS: But so many, so many more stories similar to and different from what you’ve both been describing in detail. But Ryan, part of why we wanted to have a conversation about long COVID that doesn’t begin and end with long COVID is because before the COVID pandemic became part of our lives, and before millions of people began facing this new experience called long COVID, we already had millions of people living with chronic illnesses like ME/CFS, which you live with and have lived with for some time, and that never really got talked about. It never got spotlighted in a national way. And there are so many similarities, many which really warrant additional research and lots more discussion.

So, part of what we wanted to do and part of what I wanna do next in this conversation is to go to you now, Ryan, to share your personal experience with ME/CFS, of getting sick and how that changed your life. But in particular, given that here we are talking about long COVID in the context of the need for provider education and research and the gaslighting that patients can experience being denied treatment, there are so many parts of that story that also are really part of the story of living with ME/CFS for so many people across this country. So, Ryan, I’m gonna pass you the mic next to share about your story and then to connect that up a little bit to the work that you’ve been doing with ME Action and what they’re up to.

PRIOR: Yeah, no. Thank you for the idea to do this podcast and for holding this space, which I think is a really important conversation to be having. And I’ll highlight for people that ME/CFS, which we’ve referred to a couple times, means myalgic encephalomyelitis/chronic fatigue syndrome. Myalgic refers to pain. Encephalomyelitis is a Latin-based scientific term that means inflammation of the brain and spinal cord. And so, ME/CFS is a post-viral syndrome, or some would say, infection-associated chronic disease.

My own story starts when I was in high school in 2006 and 2007. I was primarily interested in weightlifting and running cross-country and playing soccer. I was a Boy Scout, so I spent a lot of time in the woods camping and a lot of time being exposed to ticks. Ticks and Lyme disease are part of my story. Also, Lyme disease, ME/CFS, and long COVID all have similar symptoms and probably similar underlying pathologies. And at the same time, I was getting a sense of what I thought my life’s work was going to be. I was very interested in my literature classes and wanted to embark on a career as a writer. I was also interested in politics, and President Obama, or Senator Obama, was getting ready to think about running for president. And I was following that very closely as I started developing a consciousness about politics. And I came home from school one day in 2006, and I slept for—it was my junior year of high school—I slept for 16 hours straight and did that again and again and again. Within two weeks, I had to drop out of going to school altogether, and I was on a hospital homebound program that my county did too, and had several teachers came to my house to teach me for the remainder of that year.

We saw 16 different doctors, and there was a neurologist, a rheumatologist, infectious disease, psychiatry, endocrinology, multiple primary care doctors, all of which led to a diagnosis of exclusion, which ruling out each other possible diagnosis of cancer, heart disease, or AIDS or meningitis, and multiple sclerosis. Coming to this chronic fatigue syndrome diagnosis, which is you have fatigue, but we don’t really know why. It’s disabling, and yet we can’t do anything about it. And so, that became a significant formative experience in my life, was trying to figure out how to rebound from that and eventually make it to my senior year of high school, and then to enroll in college while pursuing this ongoing interest of literature and international affairs or public policy, which were my two majors in college.

And I’ll fast forward a little bit through. I ended up upon graduating, embarked on the journey to make a feature length documentary film about this disease and to start a non-profit called the Blue Ribbon Foundation, ultimately joined ranks with ME Action Network, which was doing organizing around post-viral illness, around ME/CFS, and doing activism, modeling itself off the grassroots efforts of the Obama campaign. And so, this was a way of using my long-term interest in writing and journalism with activism and with post-viral illness. And so, from 2015 through 2020, I was working for CNN and also volunteering on the board of ME Action and doing a lot of work to try to raise the profile of ME/CFS while also writing longer and longer feature stories for CNN.

And at the beginning of the pandemic, I was a features writer, primarily focused on health and science for CNN. And we began to, my colleagues and I, Amy Ashton and the entire MEC post-viral community was, you know, felt it was quite obvious that there was gonna be a huge secondary pandemic of post-viral syndrome. We didn’t have the word “long-hauler,” and we didn’t have the word “long COVID,” but we fully knew that people like Lisa and Netia we’re gonna be unwitting casualties in this ongoing neglect of post-viral syndromes. And so, we wanted to step up to do everything we could to raise an alarm about this and then to meet long-haulers where they were. And so, it was an incredible act of bravery and science and innovation when the Patient Led Research Collaborative emerged, when the Body Politic Support Group emerged, and so many of our volunteers and activists within ME Action were quick to get in touch with groups like what Lisa and Netia were working on.

VALLAS: Thank you for sharing all of that and for sharing so much of your own personal journey, Ryan. And I wanna give a plug that for folks who wanna hear more and wanna hear more about ME/CFS in particular and who also wanna hear more about the invisible chronic illness conversation outside of just the context of long COVID and the way we’re approaching it today, Ryan, you actually guest hosted a fabulous episode of Off-Kilter a number of months ago. You had a really great conversation with another chronically ill and disabled journalist named Meghan O’Rourke, who is the author of a book that I highly, highly recommend, also very much worth plugging for anyone who wants to learn more about invisible chronic illness and the politics and the experience, but also, all of which existed pre-long COVID and pre-COVID pandemic. That book is called The Invisible Kingdom, and that episode has the same name them. So, folks can find that in our show archive.

Ryan, staying with you for just a moment. You started to go there, but I just wanna give you an opportunity to kind of pull on that thread a little bit further before bringing Lisa and Netia back in and having the rest of this conversation with all three of you. How are you, as someone who has lived with ME/CFS for as long as you have, and also, as someone who is part of and very involved with a group like ME Action, how are you approaching this moment, this moment of so much attention being paid to long COVID, rightly so, but in a way that has never quite been the case for ME/CFS? How are you approaching this particular long-COVID moment?

PRIOR: Mm. Yeah, there’s a longtime advocate, Rivka Solomon, who summed it up really nicely is that the long-haulers have all the political capital, but the ME patients, the long-time advocates have all the wisdom. And so, I think that there’s, it’s an incredible symbiotic relationship between some of the, what Rivka calls the old timers and the newbies that we play a role in educating long-haulers, a lot of times behind the scenes, and then long-haulers who are doing innumerable press interviews, speaking in front of Congress, having significant opportunities to speak at medical conferences. They’ve done a phenomenal job of conveying the ME/CFS message, which is really their story, too. So, we’ve been so eager to work directly with long-haulers.

And we believe that a possible silver lining of this pandemic is that as the long-term effects of COVID become more prevalent and then lead to more research and hopefully better treatments, that that will also come back around to helping people with ME/CFS, people living with POTS, which Lisa alluded to—postural orthostatic tachycardia—people living with mast cell activation syndrome, some who live with Ehlers-Danlos syndrome, and a number of other very well known—well, well known within the chronic illness community—of effects that frequently happen after viruses, but maybe not quite so well known in medical schools or among mainstream providers. So, we have an opportunity to have a wholesale reinvention of how the next generation of providers and patients interact with chronic illness, and we hope that there could be some positive effects. And long-COVID activism is a huge part of that.

MCCORKELL: I love that quote, though, right? That who’s got the political capital and who can bring the wisdom. It’s part of why this, sort of this moment where so many folks are coming together and realizing that a big tent approach, as opposed to kind of working more in silos, is really gonna be the way forward. And we’ve seen that more broadly within the disability community and across the disability community in ways that we’ve been starting to talk about more on this podcast and which I know each of you has been incredibly thoughtful about as well.

I wanna spend the remaining time that we have talking a little bit with all three of you about what is patient advocacy? It’s a phrase that maybe folks have heard before. Maybe they haven’t heard it before. It describes what each of you is deep in and what each of your organizations is really at the forefront of. I wanna hear from each of you a little bit about that. We were talking before about some of the stories of how these organizations came into being, and we’ll also have links in our show notes for anyone who wants to connect with any of your three groups. But would love to give each of you an opportunity to talk a little bit about what patient advocacy really looks like and how each of you and your groups are doing that work. And then I wanna leave a couple minutes at the end to do a little bit of myth busting, given that there are plenty of misconceptions out there about long COVID, about COVID generally, and also about ME/CFS. And it feels like you all are very well positioned to do a little bit of myth busting as well. So, let’s first talk a little bit about patient advocacy. Lisa, I’m gonna go to you first with this. Maybe it would be helpful to actually define patient advocacy and to explain what makes it unique and important, but how you all are approaching that as well.

MCCORKELL: Sure. Yeah. Whenever I think of patient advocacy or anything patient led, which is even the name of my group, I really think of Representative Ayanna Pressley’s words and something she said many times, which is that the, “People closest to the pain should be closest to the power.” And I think that that really captures a lot of what patient advocacy is, is centering the needs of patients and putting the patient experience front and center as a way to find solutions. We, as patients, we know the needs of our community. We have experiences of extreme wait times at specialty clinics, unable to access care because of lack of a positive PCR test, the inability to work, but also the inability to get disability benefits. And these are all experiences that patients have, and it’s really impossible to know what solutions are needed without talking to the people experiencing those issues. And this really goes for policy solutions. It goes for research.

This is something that we at Patient Led Research Collaborative are constantly trying to influence research largely from what Ryan mentioned, which is that learning from people with post-viral illnesses before and building off of the wealth of research that has come before long COVID and to other viral-onset illnesses and finding research that is going to actually be helpful for folks. Post-viral illness is not new, and we need to be able to build off of previous research. The only way that we’re going to really find solutions is by building off of that and centering what patients are actually experiencing. So, I think that patient advocacy really is just centering those experiences of patients themselves, any research hypotheses based off of the patient experience, and finding policy solutions that are actually going to make a difference in people’s day-to-day life instead of maybe assumptions that people have that might help that really may not make that much of a difference, which I think we’re, you know, we often see with a lot of policy solutions that policymakers put forth who are not as tapped in to the community.

VALLAS: And Netia or Ryan, anything you wanna add to that?

MCCRAY: I can add something to it unless Ryan wants to go first.

PRIOR: You go first.

MCCRAY: Oh, thank you. I would say I’m gonna build off of what Lisa just mentioned. When people think of patient advocacy, they’re thinking just in that doctor’s office. They’re thinking just what happens when you’re at the examination table and your doctor’s going through your symptoms and possible treatment plans, etc. And based on what Lisa said, and I’m gonna expand upon this, it’s not just that. We, if anything in the past two years, have come to understand that America has always promoted the idea that self-reliance is the strongest virtue you can have, and a good American citizen is one who can pull themselves up by their own bootstraps. This means a lot of things that are necessary for people in order to recover from a health care event such as long COVID or ME/CFS are affected when they’re going through that, and the system pretty much states that you’re on your own. That’s housing. That’s food and welfare. That’s caretaking services. That’s everything.

So, when we look at patient advocacy, we look at what does the patient need in order to recover or manage their symptoms? And I think one of the things about Patient Led, ME Action, C-19 Longhauler Advocacy Project that makes me proud to be affiliated with these organizations or work with them is that we don’t look at just what happens inside that doctor’s office, but we take into account when we’re talking to policymakers like hey, with the lens of the average American doesn’t have even $1,000 in savings and are living paycheck to paycheck. If they were afflicted with any post-viral ailment, especially during a pandemic, that could spell devastation, and there’s no or very little safety nets if that happens.

And I know we’ve talked about the American Disability Association or Americans with Disability Act a little bit, or ADA. And I wanna bring that up in regards to the goal as a patient advocate is to work with others in order to create policies and systems that not only benefit your particular community, but everyone. It guarantees life and disability insurance, maybe paid family sick leave, anything that allows for folks to access a quality of life that allows for them to live and pursue happiness and all those wonderful things that are in the Declaration of Independence.

And I think to round off my point, one of the most important things of being a patient advocate is not only working together as a community, it’s working together as a community even if you don’t trust or believe that your neighbor or your colleague is carrying their fair share of the burden because maybe they can’t because of their own personal battles or burdens. And it’s probably none of our business if they can’t. But that shouldn’t stop us for wanting them to still have quality of life because life gives them some pretty bad cards. And I think tapping into that empathy and building a world that works for everyone is what it means to be a patient advocate. 

PRIOR: Great. And I would like to add that just the, one of the important themes of patient advocacy in some of the work that Century Foundation and this Disability Economic Justice Collaborative is doing more broadly is this idea of rethinking what it means to be an expert. And being an expert doesn’t mean that you have an M.D. or a Ph.D. in something, ‘cause sometimes those people have less connection to a policy issue. And the people who are living through it can oftentimes be some of the best policy entrepreneurs or innovators or patient researchers. And this is true for people living with felony convictions who might be some of the best people to rethink criminal justice reform in the same way that patient experts or patient researchers might actually be the best people to rethink scientific research.

And so, I think patient advocate is a great term, but I oftentimes use the word “e-patient,” which is an empowered patient or an expert patient. People with lived experience can guide the research. So, I’ve been incredibly enthused to, having been involved with patient advocacy for a number of years, now to see a group emerge spontaneously that I had a chance to write about in a book, The Patient Led Research Collaborative, using that term without that hint of irony, without a hint of being shy about it. And that’s, this is just a relatively obvious concept that patients can be the experts here and guide research. And I think that’s, the entire field of biomedical research needs to be responsive to that.

VALLAS: And yet that’s a radical shift that you’re describing, common sense and important as it is, right? It’s a new thing for there to even be a conversation about patients being experts, right, much as it is incredibly long overdue. And I love how you wove all of that together. Obviously, it’s a big throughline of this show trying to bring public policy conversations back to people because policy is people. And we need to put the people who are the ones with lived experience at the center of those conversations, a big part of why we wanted to do this series.

We’re gonna run out of time, but in the last couple of minutes that I’m gonna sneak in here, much to our producer Troy’s chagrin, I do wanna give each of you the opportunity to close with just any last thoughts that you have about what the public and policymakers and providers most need to know about long COVID and about ME. Here we are marking the thirty-second anniversary of the ADA. There’s a lot that’s really missing from the national conversation that is what you all have been talking about. There’s a lot that’s in the national conversation that is really myth-based and that flies in the face of some of what you all have been talking about and sharing from your own experiences. So, what else do folks most need to know? What are the misconceptions out there about long COVID or ME that you, if you wish, if you could wave a magic wand and wish away you would, any of those themes that any of you wanna take and run with as we close? And Lisa, I’m gonna give you the first opportunity and then go to Netia, and then Ryan, you’re gonna get the last word.

MCCORKELL: Yeah. I think first, one of the biggest misconceptions about long COVID generally is that this is a rare occurrence. And what we’ve seen just from recent data is that 7.5 percent of all adults in the U.S. currently have long COVID. That’s millions and millions of people. And the vast majority of those cases had initially mild or asymptomatic cases. So, this narrative that long COVID is rare, or even that if you didn’t get long COVID after your first infection, you won’t get it after a reinfection, that’s not based in data and what we’re seeing from people’s experiences. So, I think that that narrative really needs to be pushed hard against because it has a big impact on the pandemic policies that we continue to implement moving forward.

I have so many other things that I feel like I wanna push back against, a lot of misconceptions. But another one that just to, I just wanna highlight is that people often assume that if they got sick, if they became disabled, that they would be taken care of. But as all of us know, our society was not built for disabled people, and too often, particularly for low-income communities, people of color, this does not happen. People are not taken care of. So, we really need stronger protections. We need more accessible benefits. We need accommodations to be more normalized at work and those options to be expanded. So, just as we are in the midst of this mass disabling event—and again, I say midst ‘cause we are, it’s not close to being over—providing all of those is critical. And people are realizing that this is, this could happen to them, and we need to improve society’s response to this as soon as possible.

VALLAS: Netia, same question to you. And then Ryan, you’re gonna get to close us out and preview our next conversation.

MCCRAY: Well, I’m gonna just repeat a good bit of what Lisa said ‘cause I think it bears repeating. And that is long COVID is not a trauma response, is not a rare psychosomatic condition, but a physiological condition that typically occurs after exposure to SARS COVID-19. We know that is common. And even the CDC has now come out and said that at least one in five, or 20 percent, of Americans, including children, regardless of initial illness severity, vaccination status, and/or previous infection, ends up with long COVID.

I will also say the second misconception I wanna state is long COVID is not just feeling a bit tired or needing a nap. It’s more akin to your body going to war with an unknown intruder, causing invisible damage and forcing multiple organs into what I call a 24/7 survival mode, which leaves you exhausted because all of your energy is going towards a battle you can’t see.

I think my last point is that long COVID can manifest in over 200 symptoms. You’ve heard about breathlessness. You’ve heard about brain fog, chest pain, stomach issues, neurological issues, etc. as your body mounts a defense against this unknown threat within. And I think after two years of this pandemic, we’ve known about long COVID since June 2020 pretty extensively. And there’s been thousands of peer reviewed studies, including large-scale population studies across global populations, that confirms that long COVID is the consequence of a COVID-19 infection. And we also know that post-viral ailments, as you’ve heard from Ryan regarding ME or CFS and what we’ve recently discovered about Epstein-Barr virus and MS, post-viral conditions are not new. So, let’s stop treating them as rare, and let’s look at this mass disabling event that we’re at.

And in terms of the significance of this year, this is 32 years, I think you were telling us, since the ADA. And if we don’t realize that we’re in a position, that we’re in the midst of millions and millions of Americans joining the disability numbers who have already joined the numbers in the past two years, the next 32 years of what the ADA looks like is crucial for our society as well as our economy.

VALLAS: And Ryan, you’re gonna get the last word, but it’s really just sort of the beginning of the next conversation we’re gonna be having where we’re also gonna be bringing in my colleague, Kim Knackstedt to the conversation, sort of the road ahead. But where do you wanna leave us here? What final thoughts do you wanna offer in terms of what the public and policymakers and providers most need to know?

PRIOR: Yeah. And I am reluctant to give myths any additional time to fester. So, I kind of, and Lisa and Netia have given a few of them that are quite prevalent. And so, my inclination understanding rhetoric and making sure to avoid any fake news is to really try to get out in front on the conversation, is that we need to highlight this as an immense scientific opportunity. I love every opportunity I get just to interview leading molecular biologists or epidemiologists who have a really good handle on this. I think it’s extremely exciting scientifically to figure out what’s going on at a deeper level with long COVID. I think that can help unravel a number of hard-to-treat diseases. And I’ll just highlight that there are fears that long COVID, not only will it be disabling in the short term here post-infection for people, but it also could lead to rises in diseases like Parkinson’s and Alzheimer’s down the line. So, society will be feeling effects of this in a number of ways for decades to come. And so, getting in and rolling our sleeves up and trying to solve this problem here and now is gonna be a huge investment opportunity for the future of humanity.

VALLAS: I’m so grateful to all three of you for taking the time for this incredibly special conversation, a very personal conversation, a lot of very vulnerable, very real sharing. I’m really grateful for all of that. That takes a lot of emotional labor. And each of you I know is opening eyes among our listeners right now in ways that are incredibly important by that sharing.

Ryan Prior is a journalist, he’s a board member of ME Action, he’s also the author of the forthcoming book about COVID-19 and long COVID called The Long Haul, and you’ll be hearing more from him in part two of this conversation, which will be airing next week. Lisa McCorkell, as you heard, is one of the co-founders of the Patient Led Research Collaborative. And Netia McCray is the education director of the COVID-19 or C-19 Longhauler Advocacy Project. I’m so thrilled to have all three of your organizations as members of the Disability Economic Justice Collaborative given that this really is a moment where disability policy conversations absolutely must be centering the experiences, the perspectives, the expertise, as all three of you have, ME/CFS as well. So, hugely grateful to all of you for your work and for your partnership, your collaboration, and for taking the time for this special series. Thanks to all of you.

And stay tuned for next week when we will be talking lots more about the road ahead and really the policy conversation that we all need to be having in light of what we’ve been talking about with this episode. So, don’t go away. Lots more where this came from next week. But for now, thanks to all of you for taking the time, and we will leave it there. [bright theme music returns]

MCCRAY: Thank you so much. 

PRIOR: Thank you. It was great.

VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abby Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.

Tags: ,