110 - Lisa, Gina & Hannah from Patient-Led Research Collaborative

Episode 110 of the Long Covid Podcast is a chat with Lisa McCorkell, Gina Assaf & Hannah Davis, co-leads & co-founders of the Patient-Led Research Collaborative. We chat about how Long Covid & the Body Politic Slack community brought them all together, and how the organisation has progressed and flourished from there.


Website: patientledresearch.com
Nature Review: https://www.nature.com/articles/s41579-022-00846-2

- original body politic survey: https://patientresearchcovid19.com/research/report-1/

- return to work survey: https://www.sciencedirect.com/science/article/abs/pii/S0277953623006937?dgcid=coauthor

- reinfection survey: https://patientresearchcovid19.com/reinfections-study/

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am super excited to be joined tonight by Lisa, Gina and Hannah from the Patient Led Research Collaborative - that's a bit of a mouthful. So this is going to be absolutely wild. So a very warm welcome to the podcast, guys.

Hannah Davis  
Thank you. 

Lisa McCorkell  
Thank you so much for having us.

Gina Assaf  
Thank you.

Jackie Baxter  
This is gonna be well fun. So, maybe just to start with, would you mind just each giving a sort of very brief introduction to who you are, if you don't mind?

Lisa McCorkell  
Sure, I'll start us off. So I'm Lisa McCorkell. I'm one of the co founders and CO leads of patient led research Collaborative. On the call today with us is Gina and Hannah who will introduce themselves, and then one of our other co leads, Hannah Wei, couldn't make it today. 

So background on me is that my professional background is in public policy. And we all got sick in March of 2020. And started patient led research collaborative in April of 2020. So we can maybe talk a little bit more about that later. But I'm based in Oakland, California, and very happy to be here.

Gina Assaf  
I can go next. I am Gina Assaf, and I am based in Washington DC. I'm also a co founder and a co lead. I got sick, we all got sick around the same time. My background is in technology research, leveraging, you know, participatory and human centered design methods. And also, you know, researching and designing technology. I also like now, kind of been very heavily involved in research of long COVID 

And I am maybe like 80% - 90%, it depends on times 70% better, back to where I used to be pre COVID. But I still take a lot of medications to manage my symptoms. And so I'm still dealing with a lot of, you know, just long COVID stuff. So

Hannah Davis  
And I'm Hannah Davis, I'm another one of the co founders and CO leads of PLRC. Before I get sick, I was working in machine learning doing a lot of projects around generative models for art and music, and also pedagogical tools for identifying bias and machine learning datasets. Also got sick in the first wave. Also have a pretty bad kind of cognitive and you know, got the clotting markers and MECFS and dysautonomia. And yes, still not better.

Jackie Baxter  
Yeah. Thank you so much. And it's it's so amazing to have you all on the call together as well. This is really lovely. So yeah, I mean, you mentioned that patient led research collaborative kicked off, you said April 2020, I think. So I'd love to hear a little bit more about that, and how that all started and what brought you together, as well, from all year sort of different backgrounds, but sort of complementary skills, almost, if that's the right word?

Gina Assaf  
And we all found each other in Body Politic, which was a support group for long COVID. You know, we saw an op ed by Fiona Lowenstein, talking about recoveries, and I think I can speak for all of us, we were all felt so un-alone after we saw it, and then automatically joined the support group. And, you know, we saw the opportunity of folks talking about their illness, and the length of their illness and the symptoms, and it definitely was like new information that we had not seen outside of what we were experiencing. 

So, a few of us decided to kind of do a research spin on like, research ourselves, given that we were all together and put a survey out. And, you know, we put the survey out. And that was basically how people kind of started, you know, other folks, different people, started wanting to contribute and be like, here, this is an opportunity for us to like, put the data out there. And that's how we all found each other, you know, is the need to lend our skills and do the work and put the information out there. 

And we continued ever since then. And people have come and gone, you know, from the group, but there's a core set of people, especially the leads, that kind of formulated at the beginning. And, you know, some of the leads left and haven't been as involved in some people, a lot of people left it and left the group. But we're currently like a group of how many now? 

Hannah Davis  
50

Gina Assaf  
50. Yeah, and the leads are four of us, with more people potentially joining leads as well.

Jackie Baxter  
Yeah, I mean, I think, I mean, it's something that I've noticed myself, and from speaking to lots of other people, is this sort of sense of coming together to do something, whether it's you know, people have come together to do advocacy work, and people have come together to do different sorts of research and all sorts of other things. 

And I think long COVID And I think this probably goes for all sorts of other chronic conditions as well, is such an isolating experience. And it's, it's pretty horrible. It's pretty scary. But you know, through this experience, we have been able to kind of, yeah, make connections that maybe we wouldn't have done otherwise. You know, we were just saying before we started recording that, like, I would never have met you guys if it wasn't for this. But yeah, I just think what's so cool is that this has brought you guys together, sort of out of necessity, but like that you have just really taken it and run with it in such a cool way.

Lisa McCorkell  
Yeah, I think that's one of the like, most beautiful things, I'd say out of PLRC, just from my own like personal perspective, is the relationships I've formed through it. I mean, Gina and Hannah and Hannah are some of my best friends and like, I had no idea who they were three and a half years ago. 

It also is, I think, speaks to our organization's values as well, like we were all sick people, whether it's with Long COVID, or an associated condition, like MECFS, or PoTS. And so we all inherently have this understanding of what each other is going through on a day to day basis, even if our symptoms are different, you know, just like knowing that we're all dealing with some type of illness. And I don't know, I think it just really helps bring us closer together and have a deeper understanding of each other. And so it's both this like really great workplace, but also kind of a support group in and of itself. And just, you know, bringing together people who have similar experiences, that yeah, I would have never met otherwise. 

And I think it's really great, like how different our backgrounds are that, you know, we come together to make this really powerful team, because of those multidisciplinary backgrounds. But, you know, in my little policy world, like, I probably wouldn't have interacted with Hannah's AI and music background, and it's just so cool that I get to, you know, learn from everyone else and their backgrounds, and we get to create research, that's just, I think, really just stronger because of all of our different backgrounds.

Hannah Davis  
Yeah, I was just gonna add that, I think that we've been lucky in that regard, just because it made the process of like becoming disabled a lot easier for us to just automatically have that sense of acceptance. And acceptance in a situation where we were working, you know, we were really contributing to the community. 

And yeah, for me, I think, like, I had really, really - and still do - have really bad brain stuff, but did really early on, and I just remember, like them all constantly telling me like, oh, it's fine. And like, like, you know, it was still helpful. And I think our values are kind of health first. And that has remained true. And a lot of the kind of the policies we've put into place like intentional redundancy, and, you know, always taking time off or skipping meetings if you can't go, and those kinds of things have really contributed to our success and longevity as well.

Jackie Baxter  
Yeah, I think that's such a beautiful thing as well. And it's something else that I've noticed, in certain people, certain circumstances where somebody who, for example, was a doctor, and then they got ill. And suddenly, any knowledge or skills that they had previously is suddenly, you know, just completely swept under the carpet by other people. 

So rather than seeing them as a patient, who is also a doctor and has some knowledge of whatever their doctoring is in, you know, it's really allowing that person to be well, actually, you can be both. You can be both working, or participating in the sort of, well, I'm a patient. But actually because I'm a patient, that actually makes me a better whatever else I am, because I have a deeper understanding of what these people are actually going through, because you've been there. I think that probably works here as well. 

Lisa McCorkell  
Yeah, absolutely.

Jackie Baxter  
So I'd love to talk maybe a bit more - I mean, you mentioned that the whole organization kind of kicked off with the survey. And I get the impression that that was kind of like a launchpad for all sorts of other things. So maybe it would be cool to talk about kind of like, the evolution of it, you know, where did it kind of go from there?

Hannah Davis  
I mean, we always say that we did the first survey to get answers for ourselves. When we joined Body Politic in April 2020, there were already just like, 1000s of people with the, you know, kind of exact same symptoms; fatigue, the brain fog, the post exertional malaise, the cardiovascular stuff. And at the time, it would really like the narrative was: two weeks, respiratory focused, most people are going to be fine. So we were really trying to get answers for ourselves. 

But as it became more and more clear that this phenomenon was happening, you know, worldwide, having that data really early on, helped communicate the narrative, away from just anecdotes and more in a data focused way. And I really, truly saw that helping kind of let us talk to the WHO, and the CDC and the NIH, and other major organizations worldwide, much earlier on than it would have otherwise. 

But also, at the same time, it was grey literature, which means it wasn't like a formally published paper. And a lot of the organization, you know, we had people reaching out to us constantly after Ed Yong's piece, which included our survey. And a lot of sometimes what we heard back was, you know, like, we'd like to be able to cite this - can you do like something more formal? 

And we almost instantly started working on our second survey in June 2020. And it was much more detailed, it included many more symptoms, it really tried to include all the symptoms that weren't being talked about, like I mentioned earlier, and we ended up including 200 symptoms that we'd collected from the community. And also kind of a timeline of the first seven months of the illness, which remains to date one of the most cited like earliest long COVID papers. And we put that out at the end of 2020. 

And I think from there, we ended up just not only focusing on kind of like patient prioritized research, but also I think we just really gained the trust of both the patient and the researcher community, and general health community too. So we ended up being able to do more collaborations. We were last year, given $6 million, which we put 5 million of into kind of biomedical grants for researchers who can really look at like the pathophysiology of this. 

We recently did a review paper on long COVID, which I think is number 70 of like 24 million papers, just was downloaded over a million times since January. And that I think just shows the kind of impact we've been able to have, even on just like medical education and things like that. 

Gina Assaf  
So yeah, I mean, I think  the funding that we got, from the 6 million, that kind of speared like a bunch of projects that we had started and we put out, including the fund that Hannah talked about. We're wrapping up some of the projects that we had started out with them, like the reinfections project, projects at LMIC. We did the hypothesis publications, and we're doing a phenotyping one. So those are starting to wrap up. And so we're at that stage now. 

And I think one of the things we're also doing is along with like the research, there's a big advocacy effort going on in our group and leveraging data to do advocacy. So that has been happening, I think, from the beginning. And then there's been like significant events like Lisa testifying in Congress and other big ones that we've done throughout.

Lisa McCorkell  
Another one of our big accomplishments kind of came out of just like the experience of being a patient researcher and being like consulting on a lot of research studies. And we realized just how often kind of what you had been talking about - you know, a lot of times if patients are involved in research, it's a tokenizing role. It's kind of just to, you know, say that researchers talk to a patient and they can check a box. 

And so we really wanted to try to establish a new baseline of what's considered acceptable patient engagement. And so alongside the Council of medical specialty societies, we created scorecards that help people evaluate both, you know, researchers, how they can evaluate whether their research involves meaningful engagement of patients; patient groups can evaluate researchers decide if they want to get involved in a project, kind of based off of how they're scoring on these scorecards. 

And that was really informed by our own experience, as well as doing focus groups and interviews with relevant stakeholders. I think those scorecards also were a big piece of our work the last three years. And it's not even, you know, it wasn't just like long COVID focused, it really is aimed at getting to all disease groups. And I think is an important piece of our kind of patient led nature, and just like really trying to make the norm of medical research being you have to include patients, and this is what including patients means.

Jackie Baxter  
Yeah, I mean, like, the name is literally "patient led," right? You know, and it's not, as you say, it's not tokenistic of you know, well, we'll speak to a patient, and we'll probably won't really listen to them, but at least we can, you know, say that we, you know, did our quote unquote, patient engagement. You know, it's actually it's kind of - it's almost flipped it, isn't it? And it's actually, it's literally led by patients, but patients who also have other skills? 

I don't know, I wonder if - I don't like the word "legitimacy," because, like, someone who's sick shouldn't need to have to justify themselves. But it's almost like that, you know, when you mentioned the early study that you did with the the survey. And, you know, it was almost like having that data gave sort of validation, gave legitimacy to like, the condition in itself, maybe even? 

I mean, like thinking back to my early experiences, it sounds like I got ill at basically the same time as all of you guys. And, you know, I spent months and months kind of thinking, I have no idea what this is, like, you know, I must be the only person, and isn't this awful, but you know, I'm sure if I keep pushing through, then it will go away. But you were straight on that, like, you know, April 2020, like, you know, it had been around - well, it had been around for a lot longer before that actually hadn't it. But like, you know, in terms of like lockdowns and stuff, it had only really been around for about a month or so by then. Right?

Lisa McCorkell  
Yeah, I think that was the huge benefit of us all reading that op ed by Fiona Lowenstein. It just like that changed the trajectory of all of our lives. And joining the support group, the Body Politic COVID-19 Support Group -  just automatically just joining that was validation of our experiences, just realizing that we're not alone. 

And then we started hearing from people with MECFS, and people who have been sick for decades. And then they were like, don't push yourself, you know, you got to learn to pace. And that's an adjustment - learning to pace, I think everyone is still kind of trying to learn to pace even three years in. But yeah, it's it's a very isolating experience. And so being able to join something so early on was huge. 

And then we just realized, like, there's not any researchers that we know of, that are focusing on this, like, no one's really paying attention to what's going on. But we see it as a huge issue, because there are 1000s of people on this support group. So we need to study it. And like, we just got to take it into our own hands. 

Gina Assaf  
Yeah, I mean, I also think, because a lot of us, and I'm sure you too, weren't getting any answers from anybody that we considered like official, or like you'd go to your medical provider and physician. And they were just like, for the most part, gaslight you. I think you're young, you're healthy, you're fine, go home, when you're not feeling fine. And so it was super validating to find others. 

I mean, I got sick with folks who at the same time as me, they got better. And I'm, you know, I was like, Why? Why am I not getting better, and they're better. And so finding others. You know, that was like, just eye opening, empowering, comforting. And so I think putting it together in a way that we can look at it even more objectively, you know, with like a data lens, I think was something that felt like the next step, right? 

Because we didn't know like, I think at that point, like it wasn't clear who else had gotten together, as like sick people finding each other. Like were we the only group that is like finding each other? So I'm sure there were others and probably, you know, there were, but at that time it just felt like a very unique experience.

Hannah Davis  
And I think Body Politic in particular set us up for success in a few ways. Like first it was a Slack group. And so it wasn't these Facebook groups, which like, the threads were overwhelming, and they kept like repeating themselves. Like we found ourselves, or we found our group specifically in a channel called "data nerds." And so it self selected, right, for people whose coping strategy was learning as much as possible. And that's definitely true of most people in PLRC, like action and really trying to get information. 

And then the other thing they did that was just so good, and very different from most of the other groups, was they were from the beginning focused on disability justice. So focusing on people with ME and HIV AIDS who had come before us. So much of the advocacy that's been done in those spaces is like entirely relevant for our situation too, especially a lot of what we learned from kind of the minimization strategies of viral onset illnesses. It comes from basically the same playbook, right? So we had kind of expectations of what we would start seeing from people who are going to minimize us. We could use data to counteract that. 

So like one of the papers we put out, - one of the those narratives is like, Oh, the support groups are fueling this health anxiety in patients. And actually, these patients just have bad coping strategies. So we were actually able to show through data that people who joined support groups don't have health, anxiety, or depression or mental health outcomes, any different than those who don't. And that long COVID patients actually have good coping strategies. And that when you compare long COVID patients, coping strategies to people without long COVID, there are some adaptive strategies that are even higher in long COVID patients. 

So now, like when people say that, like we have like a paper to put out against it. And also just understanding, I think the values of disability justice have really shaped the way that we are trying to be as an organization, and interdependent with each other and with other communities that have a lot more knowledge than we do. 

Jackie Baxter  
Yeah, I mean, it sort of seems logical when you think about it, that people with long COVID or chronic illness in general, that they have good coping strategies, because that's kind of born out of like desperation, right? 

Gina Assaf  
Yeah, totally. 

Jackie Baxter  
It's almost like that, I'm sure there's a quote, that's escaping my, my brain, but you know, about not knowing what you can do until you're put in a position where you have to. And I think in some ways, that's kind of relevant here. Because, you know, you don't know how bad things can be. 

And I guess this comes into the whole gaslighting, or certainly lack of understanding, is that people who haven't experienced something like this cannot understand. Some of them will be empathetic, some of them will be helpful, some of them will at least want to be helpful. But nobody, I don't think can truly understand having not had some personal experience of it. And I think that's why having the patient involvement in research and you know, whatever is so important. 

And coming at this from a non medic non research background, it's always seemed to me that, like, it should be a no-brainer that you have patients involved in research in a meaningful way. And it's been really interesting kind of learning more about this, as I've spoken to more people, and you know, how it's like, oh, well, you know, yeah, you know, patients involved in research, that's actually a new thing, and we're not really sure how we think about it. And, you know, it's, it doesn't seem like a good idea, because patients, what do they know? *laughs* It's like, patients know, quite a lot, actually, as it turns out, and they're invested at a way that possibly non-patients wouldn't be.

Gina Assaf  
Yeah, for sure. I think I mean, I, when I was at one of the conferences this past couple of weeks, somebody from the rare disease community came up to me and was like, you know, this patient led research thing. I mean, that's the only thing that happens in our communities, because their illnesses that are, you know, underfunded, misunderstood. And, you know, they've been ignored for so long. And so they've had to do this patient led research and they do it, they've been doing it pretty well. It's just that they're just underfunded and you know, not giving attention. They're the only ones that are being able to advance their knowledge and their illness. And so they've been they've actually been doing it pretty well. It's just that they haven't been getting the attention and the funding. 

Long COVID, I think, it's kind of a unique situation is where we started out, I would say is like, not many people, you know, have it. And now it's not - I wouldn't call it a rare illness right? Long COVID. And so we started out as you know, this new illness. And so we did kind of put the attention out there on this illness, and did this patient led research because of the need of it. But then like, you know, that tension came on it, because it was a realization, hey, this is hitting more than just these few pockets of people. Right? 

Yeah, and in a way it highlighted how great patient led research can be because, you know, an illness that is hard to understand, and, you know, it's episodic, a little bit, some of the illness is episodic, you know, it doesn't follow like your linear, like an illness that is easily kind of identified, or the basic tests can show you what's wrong. Like, we're not the first to do it, right, the patient led and that. But I think, because the unique thing with the long COVID community, and what we do at PLRC, is we kind of lead with the patient led. And then because it's not a rare illness, it did get some attention outside of, and became a little bit more mainstream, I would say, you know,

Lisa McCorkell  
yeah, I think like Gina said, like, it has been done many, many times before, I think it's just not as well accepted within the medical community. And, you know, even in like medical schools, it's not like they are courses on how to engage patients in your research. And providers aren't even taught a lot about like what our conditions are. But I think we need to have that kind of paradigm shift. 

And there's evidence for it, like we have examples of it, especially in HIV AIDS in the 90s and 2000s. Like that is really where a lot of patient engagement and research happened. And that was because the community demanded a seat at the table and demanded a meaningful seat. But there's, you know, countless other examples of patients themselves doing research, even like not in partnership with other researchers, finding some huge advancement in their disease. 

You know, I think it's frustrating that it's taken a while for the medical community and biomedical research to really see that as a necessary aspect of their research, and not as like one off kind of like miracles that a patient could do something. Because it really is, like, we're finding solutions so much faster when patients are involved. 

And we see this and other areas. So like, you know, I think coming from the policy world, it wasn't - like it felt like a natural thing for patients to be involved in this type of thing, because there's been more of a movement and more acceptance in the policy world of people who are closest to the pain should be closest to the power. That's a quote from Ayanna Pressley. Like, there's more acceptance of the people who are most impacted by policies, who are you know, most marginalized, they should be the ones that are figuring out policy solutions. 

And so it, it felt like natural for me to do this and was just like, why is the biomedical community kind of like so resistant to this idea? You know, we're not saying that we can do everything, like I'm not in the lab doing basic science. We need basic scientists, but we can help guide based off of the experience. Like it just, you know, designing a study, that maybe assumes that a condition is going to be the same no matter what time of day, no matter what time of month, if you're menstruating is, you know, that's kind of how someone who's not experiencing an illness, and an episodic illness would maybe design a study. 

But having that patient input being like, actually, time of day really matters for my symptoms. Actually, you know, my symptoms are heavily exacerbated when I'm on my period. Like those are things that really only people with lived experience can provide. And so it's just so important to have that partnership and view both types of kind of skills and both experiences as equally valuable.

Hannah Davis  
And I think that's related to not only just like the symptoms, but with within COVID, like societal obstacles that we've faced. Like one of the things we constantly talk about is that, like the first wavers, didn't have access to PCR tests and, you know, like a third of people don't make antibodies. But yet people who are not talking to patients often require a PCR test or a positive antibody test, when 80% of people who lose antibodies are women, and this illness primarily impacts women. And so I think there are like some COVID specific things that we've been able to help shift the narratives on as well. 

Jackie Baxter  
Yeah, and that's something that I've seen in so many research studies that I've spoken to is, oh, well, in order to participate, you need a positive COVID test. I'm thinking well, by saying that, you're basically excluding, like, what 80% of first wavers, and they're the people that have the longest amount of data to give, which just seems like so frustrating.

Hannah Davis  
Yeah, in the US, the statistic is only 3% of first wavers got documentation. And throughout the height of testing, like through September 2021, the CDC says only 25% of COVID cases have documentation, due to either lack of testing or, or inaccurate testing. 

I would love to design like a general population wide update information about COVID. And that would be kind of the top of the list, because there's so much data out there about all these things that we're struggling with, and none of that data is getting communicated. And I think that's a lot of the kind of work we do too, is like around communications, but it's just only because of the failure of public health organizations to do that for us. 

Jackie Baxter  
Yeah, and I guess that's, you know, why what you guys are doing is important, you know, that this does get communicated. But also, like, how frustrating is it that, like, people who are sick are having to do it yourself?

Gina Assaf  
Yeah, and I think that's like a two ways. It's empowering in a way, you know, to, like, do things because you feel like it needs to happen. But yeah, it's also frustrating, because you're like, if I don't do it, is nobody gonna do it? Like, what's gonna happen to us? And it's kind of scary, you know, and it makes you realize how messed up our healthcare system and just the way research is done or investigated. 

It makes you wonder, you know, what else is being, you know, not taken care of, and how many other people are like being ignored with their illnesses and, situations and that sort of thing? Which, but yeah, it is, I feel like it's both, where you're, like, empowered, and but then you're also, yeah, it's like feeling both feelings at the same time.

Hannah Davis  
I sometimes joke that the the worst part of realizing that we have an impact on the world is the fact that we can have an impact on the world. And so it just feels like everything, we can affect everything. So you should. But then there's just like this tremendous burden. 

And, you know, I don't think any of us are good at saying like, Oh, no, we're not going to do this thing. Because we know it will tangibly help people and, you know, continues to and does. And also, now that it's politicized, like, to me, I feel like it's so much harder, like this year than it was in the first year, because there's just so so so much less support, like social support, or personal support.

Gina Assaf  
Yeah, and it's mind boggling, because there's more people who have it. And so there's less attention and you know, feels like less worry about it and less like attention on it. But then you know that the numbers are not low. And then there's also like, people don't even know what they're going through is potentially long COVID, or related to COVID, because of the messaging. 

With us, because it happened in such an isolated manner, we were able to like tie it directly to it. Whereas so many other people are, you know, being diagnosed with PoTS or with unknown illnesses. And it's unclear why. And so that is also another thing that I feel like we're trying to grapple with, as an organization. How do we tackle those things? It's really tricky.

Jackie Baxter  
Yeah, I mean, it is interesting how the, I guess the narrative has changed, isn't it? You know, and it does seem very much now how everybody just wants to pretend that the last three and a half years hasn't happened. And, you know, I can understand that you know, it's been traumatic for everybody on different levels and in different ways. 

But, you know, it did happen. And if we don't learn from history, then that seems really unwise. And it seems like this really sort of strange paradox kind of going on at the moment, where you've got more and more people falling unwell and oh, yeah, I had this really awful cold. And actually, you know, three months later, I'm still not feeling that good. And you're like, Yeah. But you can't say it, because nobody wants to talk about it anymore. 

Hannah Davis  
Yeah, that has been, like, really difficult to witness, especially when you know that there are things you can do to maybe minimize your chances of getting Long COVID. Like the rest, like, not being able to tell people like, oh, just take it easy for the next two months, is yeah, it's just terrible to watch the people around us, like get this. And, you know, then understand and then realize it and then ask for help, etc. But 

Gina Assaf  
yeah and it's been helpful to help folks who have joined PLRC, who are kind of those folks as well, you know, that have gone through that, where they were like, oh, yeah, it was in the back of our heads, but then I realized it was. I saw you all talk about it, but didn't, you know, think it would happen to me or whatever. And so just having those perspectives as well, kind of, is helpful for us to understand, you know, how this is going to be continued, but maybe changing, you know, way of looking at how to, I don't know, talk about it in the public or communicating and things like that.

Hannah Davis  
And I think if we had had either vaccination or prior infection had like been meaningful protection, the conversation would be different, the outlook would be different. But I think especially this year, at least, like from what I see, the majority of people who get long COVID now, were fully vaccinated, did have usually one or even two prior infections, then got it on the third time or fourth time or whatever. And because that's happening, this is a problem that is only going to increase, and we need public awareness about that. And we need, like clinical trials and treatments, like curative treatments, as soon as possible. 

Jackie Baxter  
Yeah, I think, as well, I mean, you know, obviously, the conversation here is very much around COVID and long COVID. But I think, you know, we've all kind of, you know, acknowledged tonight that this post viral conditions in general are not a new thing. And they've been going on for a long time. And, you know, this whole experience for me has been very eye opening in a lot of ways to something that I - like I knew about it, but I actually really didn't know about it as it turns out, or certainly not on any meaningful level. 

And, you know, you're kind of thinking like to the future, you know, yes, we're talking about MECFS from the past, from any number of different viruses. And we're now talking about long COVID as a result of a COVID infection. But you know, going forward, things like EBV - still around, monos - still around is still going to be causing its own cases of post viral something, and you know, anything else that happens in the future. 

And it just, it seems to me like a real opportunity. You know, it's terrible that these things have been ignored for so long. But now we've got so many people with long COVID, kind of adding their voices to the pile kind of thing, it seems, yeah, it seems like an opportunity to kind of really try and do something about this kind of collection of illnesses, that has sort of been swept under the carpet for so long. 

Hannah Davis  
Yeah, and I think that's something that bothers us all a lot. Because there, I think it's a little different in the UK. But in the US, there's so much research on these conditions like myalgic encephalomyelitis. It's a similar kind of thing where that research has just not been communicated. But so many of the patterns are the same. Like for a while one of the major theories was clotting, that MECFS was clotting. After this pair of doctors realized that heparin being administered to women who had had some kind of, I can't remember, it's a condition in pregnancy, like improved their MECFS symptoms by a lot. 

And there's T cell exhaustion, and there's the cerebral blood flow and hypo metabolism and reactivated viruses and there's just so much we, like if we were starting from there, and then building on it and seeing what COVID does specifically, etc. Rather than starting with Oh COVID is a respiratory virus, which is what we saw a lot, you know, people just assuming a respiratory hypothesis, when it's clearly a multi systemic disease, I think we would be a lot further along. 

And the researchers who do do that have much better work, they put out much better work, and you can you can see there, they're just much closer to putting out you know, something that that looks closer to a Cure or a unifying theory. 

Lisa McCorkell  
Yeah. And I think like moving forward, there's a lot of efforts within patient advocacy groups to bring awareness to all infection associated chronic conditions together. And that benefits us in so many ways. It benefits us from a provider education perspective, if providers are aware that basically any pathogen can cause long term effects. That's what we see, with chronic Lyme, that's what we see with MECFS, with PoTS, Long COVID, then they'll be able to treat patients better. But that type of education just has never really occurred at a meaningful level. And most of these patients have just been dismissed. 

It also helps us from a research perspective, being able to come to answers faster. If we look at what Hannah was saying, like looking at these conditions, seeing the similarities, doing cross illness research, to doing you know, basically the same study, but just different cohorts based off of what the inciting infection was, that's gonna get us to answers so much faster, and get us to treatments faster. 

So I think, you know, looking at all of these conditions, from that perspective, and joining forces, I think is really going to help improve our understanding, and just be able to get more support and resources to the patients that have these conditions, and hopefully, bring more you know, prevention, and be able to tackle the issue earlier on and people's illnesses. 

So yeah, it's just it's such a huge thing, if we had had that earlier, we'd be in a much different place now. But at least now, we need to use this opportunity to push that framing forward.

Jackie Baxter  
Yeah, I mean, I was thinking, just as you were speaking there, just on the most basic of levels of education, you know, this idea that if you're ill, oh, well, you know, you still need to go to work, you still need to do this, you still need to do all of these things. Oh, it's just a cold, oh, it's just a, you know, it's just a whatever. And you're thinking, well, actually, you know, if you're ill, it's not "just" an anything, even if it is, quote, unquote, just a cold, you know. 

Actually, you should still be able to allow yourself to have a day off because you're feeling like crap. Like, that's should should just be a thing that people do, and yet, it's not. And it never was for me, you know, I would always just keep on going, because that was what was expected of you, or it's certainly what I thought anyway. And it's amazing how your perspective on that can change, I think, certainly for me. 

So I guess it would be cool if you're able to share, what is going forward for you guys, have you got new exciting projects in the pipeline that you're able to talk about a little bit?

Gina Assaf  
We're at the phase where, you know, we're wrapping up a lot of the projects that we had started with that big amount of funding. And so, you know, I think we'll have some, you know, new papers or new things to share in the coming few months, we actually just got our one of our publications on return to work, which I'm really excited about. That one, I think is gonna be really interesting. So I think we'll, we'll have a lot more papers and contents coming out, that's going to keep us busy for the next few months, and wrapping up all the internal projects that we're having or were funded.

And in terms of what's next. I mean, I think we're continuing to like, you know, try to do the work and push for it on clinical trials and anything else that will benefit the Long COVID community, whether it's treatments, whether it's biomarkers, whether it's medications that are going to help with our symptoms, but like being prescribed regularly by, you know, medical providers,

Lisa McCorkell  
I was just gonna say, I mean, I'm excited. This is like, technically already stuff we did was funding our 10 studies through our patient led research fund, but, you know, over the next year, we'll start seeing results from those. And so I'm really excited to see that. And also excited to see the, you know, we'll put out results from our reinfection survey, so that will be coming out soon. 

We also I mean, I just mentioned kind of that patient advocacy groups are coming together. But so we're trying to help push forward a coalition of groups that are under the infection associated chronic condition umbrella. And so I'm really excited for that too, because I do think that that's really needed. So yeah, but ultimately, you know, we're hoping to both scale as an organization, try to do more and also stay sustainable. And so we're working on that now. 

Hannah Davis  
Yeah, I would echo mostly what's already been said. But we've seen a couple of the outputs of our research fund, including amyloid deposits and skeletal muscle tissue during PEM, and a new clinical trial, looking at viral persistence. And I think one of the things we're trying to do now, we're really focusing on clinical trials in the next year, and trying to raise money to do the research fund again, with a focus on kind of trying to get a couple meaningful biomedical clinical trials up and running. We really just see the need for that pretty urgently. 

Jackie Baxter  
Yeah, I mean, like, that must be so exciting to start to see, you know, the results of all of you know, you guys have put a load of work into this. And you know, all of the people doing the bits and pieces, they've all put all this work in and to sort of see that start to sort of come to fruition where where you're actually able to go, Oh, my goodness, we have something like tangible, like, that must be so cool.

Hannah Davis  
It's really exciting. I think it makes it worth it. Does it? I think so! *laughs*

Jackie Baxter  
it must be, certainly on some level, I think. 

Gina Assaf  
I mean, obviously, we're hoping for, you know, all of us to get better. And, you know, to elevate the patient led research community or patient lead research work, and the other infectious associated illnesses, you know, that happened out of this pandemic. And if some of our work kind of helped to that, that'd be amazing. You know, it'd be proud of that and be happy. 

But, you know, first and foremost, I hope all of us get better. And you know, and are able to like function at a pace that we're okay with, you know, and able to thrive and, beyond just surviving, which it feels like sometimes that's what we're doing.

Lisa McCorkell  
And I just want to give a shout out, I guess, to our team, because we wouldn't be here without them. And the patient community generally, because we source so many ideas and hypotheses from the patient community. So we just appreciate all of them. And I probably can't name all you know, 50 people on this podcast right now, from our organization, but just, you know, huge love and appreciation to to our team. 

Gina Assaf  
Yep. I second that. 

Hannah Davis  
Yeah, it's a really amazing group of people. 

Jackie Baxter  
Yeah, absolutely. Well, thank you guys so much for giving up - I was gonna say your evening, I don't think it is evening for you guys. But whatever time of day, it is for you - for giving up your time and your energy to come and chat with me. It's been so much fun. And yeah, thank you for all that you're doing, all that you have done, and good luck with the future plans. Maybe you can come back and talk when you've got a load of results from all of your stuff?

Lisa McCorkell  
That'd be awesome. Thank you so much, Jackie. 

Gina Assaf  
Thank you.

Hannah Davis  
Thank you so much.

Transcribed by https://otter.ai