On Tuesday, July 26, 2022, we will celebrate the thirty-second anniversary of the Americans with Disabilities Act (ADA). Once a year, when this anniversary is commemorated, disabled people, advocates, and policymakers gather to remark on the progress made since passage of the historic law and reflect on the long overdue promises.
This year, we are met with an expanded community of disabled individuals, as the last two years have brought about the largest mass disabling event in our lifetime, the COVID-19 pandemic. According to recently released data from the Center for Disease Control and Prevention (CDC), nearly one in five American adults who had the viral infection of COVID-19 will have post-viral symptoms we often call “long COVID.” Those symptoms can last weeks, months, and for some have been going on for a couple years.
While we still have much to learn about long COVID, much of our information has come from patient-led organizations. While patients have often been ignored or dismissed from doctors, they have gathered together in virtual and physical spaces to share stories, learn from one another, and build political power to begin changing the narrative.
What follows is an edited question and answer session from the Off-Kilter Podcast, hosted by The Century Foundation’s Rebecca Vallas. The podcast aired on July 1, 2022. The incredible stories and experiences from Lisa McCorkell and Netia McCray, who both have long COVID, are detailed below, with additional expertise and personal storytelling from Ryan Prior who has myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, a post-viral condition. To hear more from the participants, learn more about the full podcast here.
Q. Pre-COVID, what background or personal experience brings you to this work?
NETIA MCCRAY: My pre-COVID identity was solely as an executive director of a science, technology, engineering, and mathematics (STEM) non-profit called Mbadika. My work week revolved around showing kids that you can utilize science or engineering to bring anything that you want to reality. This work included doing hands-on workshops and managing an organization. I was creating digital content, do-it-yourself kits and toys for kids, as well as a TV show. 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. 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 am utilizing my science communication skills to make sure people know what long COVID is, what they can do to prevent it, and what they can do to manage.
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. I was also an avid runner and loved going camping and being outdoors. That was the pre-COVID Lisa. 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.
Q. When did you get sick, and when did you begin to feel that this was something more than a standard case of viral infection?
NETIA MCCRAY: I got sick late March and I just woke up, went to the bathroom, was like, huh, that was weird. Maybe it’s just pandemic-induced anxiety. I brushed it off for a day or two until the shortness of breath hit me, and I realized my body was almost starving for oxygen every time I had to sit up. It took me about a week to get a COVID test, because I 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. The doctors kept looking for my lips to get blue, which wasn’t really possible at the time. So, I didn’t present any of the hallmarks of what was being communicated as signs of a COVID infection.
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 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 get breakfast. I remember in mid-April thinking, 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.
In my case, it was Ed Yong’s Atlantic article about this new phenomenon called long COVID. I cried reading that it 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. I think that’s the key important moment that I wished policymakers, patients, patient advocates, and medical providers realized that most of us couldn’t pinpoint what was going on with us because COVID-19 was so new at the time.
LISA MCCORKELL: My first day of symptoms was March 14, 2020, so very early on. I think it was a couple of days after that when many cities in the Bay Area went on lockdown. My illness for the first couple weeks was fairly mild and I didn’t require hospitalization. I didn’t have the three standard symptoms that you needed in order to get a test for COVID: cough, shortness of breath, and fever. I was living in a house of six people at the time. I did my best to isolate. Even the mild case at that time did not feel mild to me. But I knew that I just needed to stick it out, and the government and media were telling me that I would get better within a couple weeks. I’d say after about three to four weeks of not feeling better, and, instead, actually feeling substantially worse, was really when I was realizing my experience is not lining up with what everyone was telling me it should be, and there was not really any media coverage. At that time, I would try to walk down just a block, just a few steps, and that would make me bed-bound for the rest of the day. I would have extreme shortness of breath. I would be really dizzy. I would just have these exacerbations of symptoms. And it wasn’t until Fiona Lowenstein wrote a New York Times op-ed in mid-April of their experience of a very similar trajectory of illness and symptoms that 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.
Q. What has been the scariest or most unusual moment in your illness journey? What have you learned?
LISA MCCORKELL: August 2020, a few months after I got sick, I started feeling a little better. I had learned how to pace myself from people with ME. I was doing a little better, but didn’t fully understand my limitations or what my illness was about. I had overexerted myself: I did a few exercises that were just way too much for my body. Following that, I experienced extreme tachycardia, palpitations, dizziness, shortness of breath. I really felt like I was going to die. I went to the E.R. The doctor who saw me told me that my symptoms were anxiety and sent me home without treatment. I think that last part was what 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.
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 was clear that I can’t rely on all health care providers. 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. At 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 learned what those symptoms were and how to better manage them. I think what I learned from this 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.
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 was clear that I can’t rely on all health care providers.
NETIA MCCRAY: This is another reason why hearing patient experiences is so important, because Lisa and I are on opposite sides of the country, and yet the same thing happened to both of us. In the summer of 2020, I had a cardiac event that we now believe was a heart attack. It was confirmed on various tests that I had a heart attack, and the nurse who was overseeing me at the E.R. said they wanted to keep me for observation. But, the physician said it was not a heart attack and it was only chest inflammation. He said I should go home and take a Tylenol. That was probably the most unusual moment in my journey until October of 2021. At that point, I was about a year and a half into my long COVID and thinking this couldn’t possibly get worse. I remember waking up and 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, but I was crying because I was scared that I didn’t know who she was. That was the first morning I woke up and didn’t know who was in my face. I couldn’t figure out who she was to me. For me, that was the scariest moment of my journey-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. They started ordering tests and the damage was showing up on our traditional scans.
Q. What is the story behind Patient Led and the Longhaulers Advocacy Project? How have you and others you’ve been organizing used your voices to talk to policymakers or to speak up about the needs of long haulers? What makes patient advocacy unique and important?
LISA MCCORKELL: The Patient Led Research Collaborative formed out of the Body Politic COVID Support Group back in April of 2020. A lot of us had seen Fiona Lowenstein’s article in the New York Times, and Fiona had created this support group. Thousands of people who were experiencing these prolonged symptoms joined the support group trying to find answers and trying to find community. It became very clear to many of us who had a research background in our pre-COVID life, that there was a lot of information being shared including a lot of symptoms, potential treatments, and experiences. We put together a survey that resulted in what ended up being the first research on long COVID. This was posted online as a Google Doc in May of 2020. We documented, at that time, about sixty symptoms that people were experiencing, including many non-respiratory symptoms. We found a lot of neurological symptoms. We also heard dismissal from providers and dismissal from loved ones of what our symptoms were.
That was really the birth of the Patient Led Research Collaborative. We have grown since then. We’re now a group of about forty-five people. We all have long COVID or an associated condition, such as ME/CFS or 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.
NETIA MCCRAY: C-19 Longhaulers Advocacy Project came from the same vein in the sense that there were a lot of patients trying to figure out what was going on with them, and they were communicating online. 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, that focuses on COVID advocacy, education, research, and support for long-haulers or those who care for long COVID patients. One of the things about C-19 Longhauler Advocacy Project that drew me to the organization is that it was involved in the drafting and development of Representative Ayanna Pressley’s Treat Long COVID Act. As a constituent of Representative Pressley, I was impressed.
My role with C-19 Longhauler Advocacy project is to help people gain an understanding to reduce their fear and turn their fear into management and control of what they’re going through. But by 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 people around the globe. 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.
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 people around the globe
Q. How are you thinking about long COVID?
RYAN PRIOR: A longtime advocate, Rivka Solomon, summed it up nicely: long-haulers have all the political capital, but the ME patients and the long-time advocates have all the wisdom. It’s an incredible symbiotic relationship between what Rivka calls the “old timers” and the “newbies.” 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 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 lead to more research and hopefully better treatments, that this will also come back around to helping people with ME/CFS, people living with POTS, people living with mast cell activation syndrome, some who live with Ehlers-Danlos syndrome, and a number of other well known chronic illnesses (well known within the chronic illness community). We have an opportunity to have a wholesale reinvention of how the next generation of providers and patients interact with chronic illness, long-COVID activism is a huge part of that.
We have an opportunity to have a wholesale reinvention of how the next generation of providers and patients interact with chronic illness, long-COVID activism is a huge part of that.
Q. What is patient advocacy?
LISA MCCORKELL: I really think of Representative Ayanna Pressley’s words that “The people closest to the pain should be closest to the power.” That really captures what patient advocacy is: centering the needs of patients and putting the patient experience front and center as a way to find solutions. We, as patients, know the needs of our community. We have experiences of extreme wait times at specialty clinics, inability to access care because of lack of a positive PCR test, inability to work, and inability to get disability benefits. It’s really impossible to know what solutions are needed without talking to the people experiencing those issues. This goes for policy solutions and research. We at Patient Led Research Collaborative are constantly trying to influence research largely from 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. 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 assumptions that people have that might help that really may not make that much of a difference.
That really captures what patient advocacy is: centering the needs of patients and putting the patient experience front and center as a way to find solutions.
NETIA MCCRAY: This means accessing 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, that are difficult and you are 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 the patient needs 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 is that we don’t look at just what happens inside that doctor’s office, but we take that into account when we’re talking to policymakers. We have a lens that the average American doesn’t have even $1,000 in savings and are living paycheck to paycheck. If they are afflicted with any post-viral ailment, especially during a pandemic, that could spell devastation, and there’s no or very few safety nets if that happens. Tapping into that empathy and building a world that works for everyone is what it means to be a patient advocate.
RYAN PRIOR: One of the important themes of patient advocacy in the work that The Century Foundation and this Disability Economic Justice Collaborative is doing more broadly is this idea of rethinking what it means to be an expert. Being an expert doesn’t mean that you have an MD or a PhD, because sometimes those people have less connection to a policy issue. The people who are living through it can oftentimes be some of the best policy entrepreneurs or innovators or patient researchers. 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. “Patient advocate” is a great term, but I often use the word “e-patient,” which is an “empowered patient” or an “expert patient.” People with lived experience can guide the research.
If we don’t realize that we’re in the midst of millions of Americans joining the disability community, then the next thirty-two years of what the ADA looks like is crucial for our society as well as our economy.
Q. What are the major misconceptions about long COVID?
MCCORKELL: One of the biggest misconceptions about long COVID is that this is a rare occurrence. What we’ve seen from recent data is that 7.5 percent of all adults in the United States currently have long COVID. That’s millions and millions of people. The vast majority of those cases had initially mild or asymptomatic cases. 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 on the data or what we’re seeing from people’s experiences. 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.
Also, 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. We really need stronger protections. We need accommodations to be more normalized at work and those options to be expanded. Just as we are in the midst of this mass disabling event—and again, I say midst because we are, it’s not close to being over—providing all of the care and benefits is critical.
NETIA MCCRAY: 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.
Long COVID can manifest in over 200 symptoms. You’ve heard about breathlessness, brain fog, chest pain, stomach issues, neurological issues, and more. After two years of this pandemic, we’ve known about long COVID since June 2020 pretty extensively. And we also know that post-viral ailments are not new. So, let’s stop treating them as rare, and let’s look at this mass disabling event that we’re in. And in terms of the significance of this year, this is thirty-two years since the ADA. And if we don’t realize that we’re in the midst of millions of Americans joining the disability community, then the next thirty-two years of what the ADA looks like is crucial for our society as well as our economy.
Getting in and rolling our sleeves up and trying to solve this problem here and now is going to be a huge investment opportunity for the future of humanity.
PRIOR: We need to highlight this as an immense scientific opportunity. I love every opportunity I get 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. 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. Society will be feeling the effects of this in a number of ways for decades to come. Getting in and rolling our sleeves up and trying to solve this problem here and now is going to be a huge investment opportunity for the future of humanity.
Tags: disability, covid-19, long covid
The Long Haul: Q&A About Long COVID Patient-Led Advocacy
On Tuesday, July 26, 2022, we will celebrate the thirty-second anniversary of the Americans with Disabilities Act (ADA). Once a year, when this anniversary is commemorated, disabled people, advocates, and policymakers gather to remark on the progress made since passage of the historic law and reflect on the long overdue promises.
This year, we are met with an expanded community of disabled individuals, as the last two years have brought about the largest mass disabling event in our lifetime, the COVID-19 pandemic. According to recently released data from the Center for Disease Control and Prevention (CDC), nearly one in five American adults who had the viral infection of COVID-19 will have post-viral symptoms we often call “long COVID.” Those symptoms can last weeks, months, and for some have been going on for a couple years.
While we still have much to learn about long COVID, much of our information has come from patient-led organizations. While patients have often been ignored or dismissed from doctors, they have gathered together in virtual and physical spaces to share stories, learn from one another, and build political power to begin changing the narrative.
What follows is an edited question and answer session from the Off-Kilter Podcast, hosted by The Century Foundation’s Rebecca Vallas. The podcast aired on July 1, 2022. The incredible stories and experiences from Lisa McCorkell and Netia McCray, who both have long COVID, are detailed below, with additional expertise and personal storytelling from Ryan Prior who has myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, a post-viral condition. To hear more from the participants, learn more about the full podcast here.
Q. Pre-COVID, what background or personal experience brings you to this work?
NETIA MCCRAY: My pre-COVID identity was solely as an executive director of a science, technology, engineering, and mathematics (STEM) non-profit called Mbadika. My work week revolved around showing kids that you can utilize science or engineering to bring anything that you want to reality. This work included doing hands-on workshops and managing an organization. I was creating digital content, do-it-yourself kits and toys for kids, as well as a TV show. 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. 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 am utilizing my science communication skills to make sure people know what long COVID is, what they can do to prevent it, and what they can do to manage.
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. I was also an avid runner and loved going camping and being outdoors. That was the pre-COVID Lisa. 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.
Q. When did you get sick, and when did you begin to feel that this was something more than a standard case of viral infection?
NETIA MCCRAY: I got sick late March and I just woke up, went to the bathroom, was like, huh, that was weird. Maybe it’s just pandemic-induced anxiety. I brushed it off for a day or two until the shortness of breath hit me, and I realized my body was almost starving for oxygen every time I had to sit up. It took me about a week to get a COVID test, because I 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. The doctors kept looking for my lips to get blue, which wasn’t really possible at the time. So, I didn’t present any of the hallmarks of what was being communicated as signs of a COVID infection.
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 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 get breakfast. I remember in mid-April thinking, 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.
In my case, it was Ed Yong’s Atlantic article about this new phenomenon called long COVID. I cried reading that it 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. I think that’s the key important moment that I wished policymakers, patients, patient advocates, and medical providers realized that most of us couldn’t pinpoint what was going on with us because COVID-19 was so new at the time.
LISA MCCORKELL: My first day of symptoms was March 14, 2020, so very early on. I think it was a couple of days after that when many cities in the Bay Area went on lockdown. My illness for the first couple weeks was fairly mild and I didn’t require hospitalization. I didn’t have the three standard symptoms that you needed in order to get a test for COVID: cough, shortness of breath, and fever. I was living in a house of six people at the time. I did my best to isolate. Even the mild case at that time did not feel mild to me. But I knew that I just needed to stick it out, and the government and media were telling me that I would get better within a couple weeks. I’d say after about three to four weeks of not feeling better, and, instead, actually feeling substantially worse, was really when I was realizing my experience is not lining up with what everyone was telling me it should be, and there was not really any media coverage. At that time, I would try to walk down just a block, just a few steps, and that would make me bed-bound for the rest of the day. I would have extreme shortness of breath. I would be really dizzy. I would just have these exacerbations of symptoms. And it wasn’t until Fiona Lowenstein wrote a New York Times op-ed in mid-April of their experience of a very similar trajectory of illness and symptoms that 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.
Q. What has been the scariest or most unusual moment in your illness journey? What have you learned?
LISA MCCORKELL: August 2020, a few months after I got sick, I started feeling a little better. I had learned how to pace myself from people with ME. I was doing a little better, but didn’t fully understand my limitations or what my illness was about. I had overexerted myself: I did a few exercises that were just way too much for my body. Following that, I experienced extreme tachycardia, palpitations, dizziness, shortness of breath. I really felt like I was going to die. I went to the E.R. The doctor who saw me told me that my symptoms were anxiety and sent me home without treatment. I think that last part was what 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.
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 was clear that I can’t rely on all health care providers. 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. At 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 learned what those symptoms were and how to better manage them. I think what I learned from this 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.
NETIA MCCRAY: This is another reason why hearing patient experiences is so important, because Lisa and I are on opposite sides of the country, and yet the same thing happened to both of us. In the summer of 2020, I had a cardiac event that we now believe was a heart attack. It was confirmed on various tests that I had a heart attack, and the nurse who was overseeing me at the E.R. said they wanted to keep me for observation. But, the physician said it was not a heart attack and it was only chest inflammation. He said I should go home and take a Tylenol. That was probably the most unusual moment in my journey until October of 2021. At that point, I was about a year and a half into my long COVID and thinking this couldn’t possibly get worse. I remember waking up and 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, but I was crying because I was scared that I didn’t know who she was. That was the first morning I woke up and didn’t know who was in my face. I couldn’t figure out who she was to me. For me, that was the scariest moment of my journey-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. They started ordering tests and the damage was showing up on our traditional scans.
Q. What is the story behind Patient Led and the Longhaulers Advocacy Project? How have you and others you’ve been organizing used your voices to talk to policymakers or to speak up about the needs of long haulers? What makes patient advocacy unique and important?
LISA MCCORKELL: The Patient Led Research Collaborative formed out of the Body Politic COVID Support Group back in April of 2020. A lot of us had seen Fiona Lowenstein’s article in the New York Times, and Fiona had created this support group. Thousands of people who were experiencing these prolonged symptoms joined the support group trying to find answers and trying to find community. It became very clear to many of us who had a research background in our pre-COVID life, that there was a lot of information being shared including a lot of symptoms, potential treatments, and experiences. We put together a survey that resulted in what ended up being the first research on long COVID. This was posted online as a Google Doc in May of 2020. We documented, at that time, about sixty symptoms that people were experiencing, including many non-respiratory symptoms. We found a lot of neurological symptoms. We also heard dismissal from providers and dismissal from loved ones of what our symptoms were.
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That was really the birth of the Patient Led Research Collaborative. We have grown since then. We’re now a group of about forty-five people. We all have long COVID or an associated condition, such as ME/CFS or 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.
NETIA MCCRAY: C-19 Longhaulers Advocacy Project came from the same vein in the sense that there were a lot of patients trying to figure out what was going on with them, and they were communicating online. 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, that focuses on COVID advocacy, education, research, and support for long-haulers or those who care for long COVID patients. One of the things about C-19 Longhauler Advocacy Project that drew me to the organization is that it was involved in the drafting and development of Representative Ayanna Pressley’s Treat Long COVID Act. As a constituent of Representative Pressley, I was impressed.
My role with C-19 Longhauler Advocacy project is to help people gain an understanding to reduce their fear and turn their fear into management and control of what they’re going through. But by 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 people around the globe. 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.
Q. How are you thinking about long COVID?
RYAN PRIOR: A longtime advocate, Rivka Solomon, summed it up nicely: long-haulers have all the political capital, but the ME patients and the long-time advocates have all the wisdom. It’s an incredible symbiotic relationship between what Rivka calls the “old timers” and the “newbies.” 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 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 lead to more research and hopefully better treatments, that this will also come back around to helping people with ME/CFS, people living with POTS, people living with mast cell activation syndrome, some who live with Ehlers-Danlos syndrome, and a number of other well known chronic illnesses (well known within the chronic illness community). We have an opportunity to have a wholesale reinvention of how the next generation of providers and patients interact with chronic illness, long-COVID activism is a huge part of that.
Q. What is patient advocacy?
LISA MCCORKELL: I really think of Representative Ayanna Pressley’s words that “The people closest to the pain should be closest to the power.” That really captures what patient advocacy is: centering the needs of patients and putting the patient experience front and center as a way to find solutions. We, as patients, know the needs of our community. We have experiences of extreme wait times at specialty clinics, inability to access care because of lack of a positive PCR test, inability to work, and inability to get disability benefits. It’s really impossible to know what solutions are needed without talking to the people experiencing those issues. This goes for policy solutions and research. We at Patient Led Research Collaborative are constantly trying to influence research largely from 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. 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 assumptions that people have that might help that really may not make that much of a difference.
NETIA MCCRAY: This means accessing 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, that are difficult and you are 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 the patient needs 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 is that we don’t look at just what happens inside that doctor’s office, but we take that into account when we’re talking to policymakers. We have a lens that the average American doesn’t have even $1,000 in savings and are living paycheck to paycheck. If they are afflicted with any post-viral ailment, especially during a pandemic, that could spell devastation, and there’s no or very few safety nets if that happens. Tapping into that empathy and building a world that works for everyone is what it means to be a patient advocate.
RYAN PRIOR: One of the important themes of patient advocacy in the work that The Century Foundation and this Disability Economic Justice Collaborative is doing more broadly is this idea of rethinking what it means to be an expert. Being an expert doesn’t mean that you have an MD or a PhD, because sometimes those people have less connection to a policy issue. The people who are living through it can oftentimes be some of the best policy entrepreneurs or innovators or patient researchers. 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. “Patient advocate” is a great term, but I often use the word “e-patient,” which is an “empowered patient” or an “expert patient.” People with lived experience can guide the research.
Q. What are the major misconceptions about long COVID?
MCCORKELL: One of the biggest misconceptions about long COVID is that this is a rare occurrence. What we’ve seen from recent data is that 7.5 percent of all adults in the United States currently have long COVID. That’s millions and millions of people. The vast majority of those cases had initially mild or asymptomatic cases. 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 on the data or what we’re seeing from people’s experiences. 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.
Also, 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. We really need stronger protections. We need accommodations to be more normalized at work and those options to be expanded. Just as we are in the midst of this mass disabling event—and again, I say midst because we are, it’s not close to being over—providing all of the care and benefits is critical.
NETIA MCCRAY: 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.
Long COVID can manifest in over 200 symptoms. You’ve heard about breathlessness, brain fog, chest pain, stomach issues, neurological issues, and more. After two years of this pandemic, we’ve known about long COVID since June 2020 pretty extensively. And we also know that post-viral ailments are not new. So, let’s stop treating them as rare, and let’s look at this mass disabling event that we’re in. And in terms of the significance of this year, this is thirty-two years since the ADA. And if we don’t realize that we’re in the midst of millions of Americans joining the disability community, then the next thirty-two years of what the ADA looks like is crucial for our society as well as our economy.
PRIOR: We need to highlight this as an immense scientific opportunity. I love every opportunity I get 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. 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. Society will be feeling the effects of this in a number of ways for decades to come. Getting in and rolling our sleeves up and trying to solve this problem here and now is going to be a huge investment opportunity for the future of humanity.
Tags: disability, covid-19, long covid