Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC

Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization.

PLRC started in spring 2020, when a group of people with Long COVID connected in an early support group and used their research experience to begin studying the disease. They published some of the first scientific papers about Long COVID, work that was instrumental in defining the disease and garnering attention from other scientists, policymakers, journalists, and the world at large.

During her time co-leading the organization, McCorkell authored influential studies published in journals like Nature Reviews Microbiology and The Lancet’s EClinicalMedicine. She also helped start PLRC’s Patient-Generated Hypothesis Journal, awarded grants to other researchers, and became a leading voice in advocacy as one of the original authors of an op-ed in Nature calling for a Long COVID Moonshot — a call that later became a bill in the U.S. Senate. McCorkell was recognized as one of Nature’s 10 people who helped shape science in 2022.

The Sick Times co-founder and managing editor Betsy Ladyzhets spoke with McCorkell in an exit interview. She reflected on her time collaborating on formative Long COVID studies, advocating for federal funding, developing new patient-led initiatives, and more.

This interview has been lightly edited and condensed for clarity. Listen to the audio version on our podcast:

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Betsy Ladyzhets: We’ve all been thinking about and looking back on the fact that somehow March 2020 was five years ago. So I wanted to start by asking what that time in early 2020 was like for you, and what you would want folks to know looking back about the founding of the Patient-Led Research Collaborative?

Lisa McCorkell: I first got sick with COVID March 14th of 2020, a couple days before lockdown in California, where I was. I had an initially mild case — it was still an awful experience. And at the time, I was finishing up grad school.

As the weeks went on, I wasn’t getting better, I was getting worse. I couldn’t walk a block without triggering what I now know as post-exertional malaise. A few weeks prior, I was running 10, 11 miles, so it was quite jarring. [Health care] providers obviously didn’t know what was going on at the time, many providers and friends were dismissing my symptoms. Thankfully, about a month into my symptoms, I came across Fi Lowenstein’s article in The New York Times describing their own experience with prolonged symptoms. And I joined Body Politic, the support group that they had set up. Thousands of others did overnight, and everyone was sharing their experiences in the Slack group.

Gina Assaf and a few others created a survey to document and identify trends in what people were experiencing. I volunteered to help, as well as the other PLRC co-founders, and that’s what resulted in the first research on Long COVID. We got it out pretty fast — that Google doc was posted in May of 2020 — and from there, it was kind of this natural progression. We started getting inquiries about the research. We saw that there was a need for more. And so Gina, Hannah Davis, Hannah Wei, Athena Akrami, and I kept going.

It became an ad hoc organization, and then a full organization. As we remained sick, we felt the need to research and advocate was growing. We got feedback from the patient community that this work was helpful and really validating their experience.

BL: What are some of the ways in which the project has expanded and gone in different directions since then? I know PLRC is still doing research, but also funding other research and serving as advisors to other scientists doing advocacy work, publishing a journal. What else would you want people to know about how everything has evolved since that initial project?

LM: We’ve really tackled a lot, which is amazing, and we’ve tried, in the process, to be as responsive as possible to the needs of the community … [For example,] our decision to focus on reinfections was because we were hearing from the community that reinfections were making people worse a lot of the time. 

Even creating the Patient-Led Research Fund [came from] hearing from researchers that they didn’t have a solid source of funding, and that, if we were able to apply for funding and kind of re-grant that out in a patient-led way, that could fill a need of the community. Creating the Patient-Generated Hypotheses Journal, [that aimed to be] a place where the community can submit their hypotheses. Folks who may not have the academic background but have immense lived experience, as well as research experience, just doing their own research — [the Journal is] giving them a platform to be able to do that.

Thinking about, how can we best serve the community? That often meant pushing the boundaries of what patient-centered research has meant historically, and lining that up where we could find the resources to do that. We weren’t able to necessarily, you know, go after all of our ideas, because it required resources — financial resources, labor — but where it lined up, we really just tried to do everything we could.

BL: It’s really impressive, everything that you all have been able to accomplish. I wanted to ask, too — like you mentioned, this is not the first patient-led research that has ever existed, and you all have done a lot of collaborations with advocates and researchers who have expertise in myalgic encephalomyelitis (ME), other infection-associated chronic conditions, and many other chronic diseases that have similarities or connections with Long COVID. So I wanted to ask what some of the major lessons have been for you in, learning from that history and collaborating with these other groups, other people. 

LM: I’m immensely and forever grateful to the ME community, the entire infection-associated chronic condition community. In those first few years, they reached out to us, saw all the research that we had been doing, [and were like,] “We know part of what’s going on here, and we’ve been experiencing it for decades.”

Learning about the history of neglect, and that the reason Long COVID is as unaddressed as it is, that we don’t have treatments, that we don’t have a cure, is because of the historical neglect and underfunding of those conditions — it really reinforced, to me, early on, the importance of cross-disability solidarity. In addition to the overlapping mechanisms amongst many subtypes of Long COVID and IACCs, just remembering that we’re all in this together, no one gets left behind, and we’re stronger together.

Especially early on, a lot of the work of the early Long COVID advocates was educating researchers and clinicians on the basics of other IACCs, like what post-exertionional malaise was, what POTS was. That was such a big focus because so many researchers and clinicians didn’t know anything about it, because of the historical neglect. We were able to learn that from the folks who had the patience, and very willingly gave their spoons to us to teach us about living with ME and POTS and other IACCs for years. So, yeah, I’m just forever grateful to them.

BL: Yeah, I can imagine it was meaningful to get initial outreach from them. Do you remember what that was [like]?

LM: It was pretty early on [in 2020]. People with ME reached out [including JD Davids, Jaime Seltzer, Alison Sbrana] … It just meant a lot to also have that [validation]. At the time, there was just so much dismissal of our symptoms that it’s like, “Okay. Other people have been experiencing this for a long time, and have some knowledge” — like teaching us about pacing, that changed the trajectory of my illness. I could have been much sicker than I am now if I didn’t know about that.

Learning about the history of neglect, and that the reason Long COVID is as unaddressed as it is, that we don’t have treatments, that we don’t have a cure, is because of the historical neglect and underfunding of those conditions — it really reinforced, to me, early on, the importance of cross-disability solidarity.

Lisa McCorkell

BL: Also, the collaboration to then educate clinicians and researchers is so meaningful. Like, I still see people citing the paper of PLRC’s initially released as a preprint late in 2020 and then it was in The Lancet [eClinical Medicine] in 2021. When you see people say there are 200-plus potential symptoms, that’s the original reference. So I’m curious, what you see as the impact of some of this work, and the impact in terms of actually defining Long COVID and helping the broader medical and research communities understand what this is.

LM: Yeah, I think it’s had really far-reaching impacts. We didn’t anticipate it. I think early on, it demonstrated to the world, like, this is a problem. It was what got the attention of press, of policymakers, of the people with ME and dysautonomia who reached out to us. Ed Yong started writing his amazing Long COVID article[s].

BL: Right, his first piece [about Long COVID] referenced the May 2020 report.

LM: Which was, yeah, incredible. And then having that eClinical Medicine paper that documented over 200 symptoms of Long COVID, the fact that that’s still cited regularly, just shows — yeah, it still is having that impact. It is still contributing to medical education.

Really, that survey was so patient-driven and patient-led. [It came from] hearing from what was going on the community, what people were experiencing, and [considering how to] best document this. … It was so good to see how much validation it brought people who were being dismissed right and left in those early days. [We were also] trying to figure out, what is going on with us? We felt so alone those early days, that now seeing where that [initial research] has taken us, and that it’s been the foundation to a lot of the Long COVID research that has come next is just really incredible.

BL: To switch gears a little bit. I wanted to also ask about some advocacy stuff. You obviously are one of the original authors of the op-ed calling for a Long COVID Moonshot, which has become an actual piece of legislation. Where did the initial idea for that come from, and how have you seen, the progression of it, future prospects — maybe that’s a bit depressing to talk about. Anything you’re thinking about there.

LM: Dr. Michael Peluso is the other co-author on that piece. He was asked to write a piece about, basically, how do we figure out Long COVID? And then he invited me to co-author it, and it was clear to both of us that the lack of sustained and significant investment into research in Long COVID and IACCs was really the largest barrier to progress, so that was our focus.

Just to give Michael Peluso his flowers — like, I mean, his research speaks for itself, extremely high-quality, well-communicated, cutting-edge. But he also has this incredible vision. He deeply cares about individual patients and the patient community as a whole. I think having the insight to include a patient on that [op-ed] also is just really telling of where his heart is, and we’re just so lucky to have him in our corner.

The day I got the email that [Moonshot] was going to potentially turn into a piece of legislation, was like, the best day of my life. [I knew] this is what we need in order to make progress and find treatments and find cures.

Yes, it started with that piece, but then the community really rallied around it. [Advocates] formed Long COVID Moonshot, the organization, and there were calls made, and then there was the hearing … It really just felt like that legislation was a community effort. It was just really awesome. And then once it was introduced, it had so many amazing sponsoring organizations, too, from across disabilities, across economic justice spaces — it really was so well-supported.

I’m really hopeful that it will be reintroduced this session. There will likely need to be changes made to account for some of the current administration changes. So it might, you know, need to look differently. Even if that bill itself doesn’t pass, it shows the power of the community and that we can get that type of legislation if we really rally behind a call.

BL: I’m glad to hear that you’re optimistic. That makes me more optimistic, too. What are some of the other things you’re thinking about in terms of the current landscape with Trump and RFK Jr. and [the] chaotic administration we have right now. How would you like to see both people in the Long COVID research space and advocacy groups, perhaps within Long COVID and other disability groups as well, respond to this?

LM: It’s been a dark time, very disheartening and devastating. I think, while no administration has given the necessary resources to tackle Long COVID or any infection-associated chronic condition, the attacks that are happening now will set us back and especially leave already marginalized populations even more vulnerable. It’s really difficult to see.

What I’d like to see from advocates and researchers moving forward is — there’s value in learning from the past, seeing how the community can show up for each other through mutual aid, or even as the government was moving on from the pandemic, how things like clean air clubs were established. We’ve filled roles and needs in other ways when the government has failed us. 

I’d love to see more solidarity within our community, as well as across related communities. Even if like groups disagree about some aspects, figure out what you can agree on and fight for that together. I think it’s critical to have empathy for each other, have conversations, and recognize the systems that we’re fighting against. Fighting with each other is not going to solve anything. [We should be] finding allies in unlikely places and then looking locally, like, what at the local and state level can we do? 

BL: It’s something we’ve seen at The Sick Times too, in terms of the diversity of our readers and where people are coming from. There are so many people who are affected by Long COVID and by other IACCs. It feels like there are a lot of openings and also opportunities to, like you said, ask state and local governments to do more.

LM: A lot of it is thinking creatively, and being willing to do things differently. … And it’s just a time for creativity and solidarity. 

BL: In looking at the current research landscape, what are some of the things that you are watching or excited to follow, excited to see results from, in terms of clinical trials, pathobiology studies, things like that?

LM: I am really excited for all the clinical trials, which I think most Long COVID patients are. The baricitinib trial, I’m really excited about, [and] Dr. Putrino and Iwasaki and Proal’s rapamycin trial. I’m looking forward to still seeing how RECOVER-TLC ends up and what they choose. And I’m hopeful that will still happen, even amidst the current federal changes — hoping that continues and leads to really solid trials.

I am excited about Dr. Peluso’s tissue bank and the work that’ll come out of that, and then what will come out of the Patient-Led Research Fund. A lot [of the projects] that we funded are coming out with results soon, or already have come out with results, like Rob Wust and Brent Appelman’s team … I think there’s a lot that is in the works that is really exciting. And I’m just hopeful that those researchers have the ability to continue doing their work, even amidst the federal cutbacks.

BL: Another thing I wanted to ask you about is the challenge of burnout and doing this work for a long time. Obviously, you and many others have been at this for five years at this point. So, to any extent you’re comfortable talking about it what has your experience been like with that? What advice would you have for other people who are similarly coming at this five-year point in advocating for Long COVID while also living with it?

LM: Yeah, it’s been a wild five years. Long COVID advocates, especially early on, probably no one expected that we’d be doing this with our lives. It was a lot to adjust to, and especially early on, it really felt like we were on our own — like if we were going to get better, it was going to be up to us. And then that, on top of developing a new disability during a pandemic that society decided it didn’t want to address anymore, yet it’s still an active threat — it’s a lot.

It really led to feeling like everything is critical to do. That we have to respond to any and all advocacy opportunities. We have to be experts on all policy areas. We have to educate all researchers and clinicians.

In this community, especially given that it’s so new, there’s only a handful of paid folks doing this part- or full-time. I was lucky enough to be one of them. But we need groups that focus on advocacy, research, and support to be more resourced, particularly patients of color. That will help with some of the burnout. If you’re not getting paid to do this work, and it’s just based off when you have free time — how often do we have free time when we’re all so sick and have such limited spoons? 

It’s tough. I wasn’t perfect in addressing burnout by any means. I enacted things [to address it] for myself much later than I should have. But I think identifying the most impactful opportunities, learning when to say no, when to rest, when to pass along things, ensuring that you know my work aligns with my values — all of that was really important to me. It often feels like there’s no room for mistakes, and that you have to say everything perfectly. There’s often a culture of calling people out instead of calling people in, and that can lead to people walking away, even [people] who have good intentions and want to do this work. 

Even when the work itself felt really hard, I felt better when I was supported by my community and was in community with others. [That’s also important:] Yes, it’s on the individual to implement things to help reduce burnout, but it’s also a community problem. How can we as a community best support our advocates and researchers, clinicians, the people who are working day in and day out for us? How can we best support them?

We need groups that focus on advocacy, research, and support to be more resourced, particularly patients of color. … If you’re not getting paid to do this work, and it’s just based off when you have free time — how often do we have free time when we’re all so sick and have such limited spoons?

Lisa McCorkell

BL: What other advice would you give to people who are interested in getting involved with advocacy or with community organizing in Long COVID and related spaces?

LM: First, I’d say, do it. We need more advocates. If you can, do it! I think what was important to me was learning the history of IACCs, of disability advocacy generally, and recognizing our place in the ecosystem. [I recommend] learning about ableism, working on your own internalized ableism, and then being intentional about being in community with, of course, the Long COVID community, but also the broader IACC and disability community.

Also, I find it a little more manageable if you can find your niche, both in topic area and type of advocacy. It can be really easy to get swept up into working on everything, but that can often spread people too thin. There are so many aspects to Long COVID advocacy, from research funding, to also Medicaid and home- and community-based services … Maybe there’s a policy area that you’re passionate about, or maybe you want to be someone who does the back-end work for letter-writing campaigns. All of that is needed.

Finding others who are working on it [these policy issues] already, especially in the broader disability community, and getting plugged into the organizations that exist, like PLRC or like COVID-19 Longhauler Advocacy Project. These folks have been doing this and need support, and want to involve others in the work moving forward. 

BL: Thank you. Is there anything else we haven’t talked about yet that you’d want folks to know in terms of achievements from your time at PLRC, or other big-picture takeaways?

LM: I’m really proud of the PLRC team. We’ve grown a lot over the last few years … And I just am so grateful to have been in community with those folks and to have grown something so beautiful the last five years. I’m proud of both the organization that we built that allows patients to participate and work when they can with a culture of accessibility. And then also for putting more attention on the power and utility of patient-led research through, yes, our own research, but also through our patient-led research scorecards, through the hypotheses journal, through the research fund. 

I hope that moving forward, that [those projects] can continue demonstrating to the world how important it is that patients have not only a seat at the table, but are really leading conversations. Having that kind of shift in mindset where patients are really leading the work and are considered experts on the condition that’s happening to themselves. 

Doing this work has been really the honor of my life. I’ve been lucky enough to be in a position where I can work closely with a lot of different folks across organizations, and just seeing how hard everyone works, how much everyone cares, I’m just so immensely grateful to all of the advocates, the researchers, clinicians, policymakers that like work on this and care about Long COVID. And I’m really grateful for everyone who’s working on this. 

BL: Thanks again for doing this [interview]. I really appreciate it. 

LM: Thank you so much. 

I hope that moving forward, that [those projects] can continue demonstrating to the world how important it is that patients have not only a seat at the table, but are really leading conversations.

Lisa McCorkell

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