The Amsterdam News interviewed Lisa McCorkell, one of the co-founders of the Patient-Led Research Collaborative, who has a background in public policy, public health advocacy, and research. She is a co-author of the article “Long COVID: major findings, mechanisms and recommendation.” This interview has been edited and condensed for clarity.
AmNews: Please tell us about your background and your work?
McCorkell: The Patient-Led Research Collaborative is a group of Long COVID patients who conduct research on Long COVID and do advocacy for people with Long COVID and associated conditions. I got COVID in March of 2020.
AmNews: Tell us about your COVID experience.
McCorkell: I inherently knew (I had COVID). I wasn’t able to get a test but I…felt different in my body than anything else I had before. It was right when people were talking about it…I was at Berkeley at the time for graduate school. I got the alert that someone on campus tested positive and then that night, I started feeling symptomatic. I think I got it traveling, so I got it pretty early on and then wasn’t able to get a test because I didn’t meet all three of the main symptoms you had to have at the time: fever, cough, and shortness of breath.
It wasn’t severe enough to be hospitalized, so I didn’t get a test. My doctor said I’d be better in a couple weeks—”Just isolate from your roommates and you’ll be fine.” I was annoyed at how long it was taking me to recover, but when I got to a month of not being better and actually feeling quite significantly worse than at the beginning, I really started to worry because this wasn’t being talked about in the media at the time.
Around this time, Fiona Lowenstein wrote an op-ed in the New York Times that described their experience having these prolonged symptoms from COVID. They started the Body Politic support group, so I joined that. A group of us who had [an] interest in data and data backgrounds put together a survey to document everyone’s experiences and the result of that survey was the first research on Long COVID. That was published—we just posted it as a Google doc in May of 2020.
We documented [approximately] 60 symptoms. We showed that it wasn’t (just) a respiratory illness—that there were a lot of neurological symptoms. Things that I think became more commonly known in late 2020/early 2021, we identified right away.
That work kept going and we ended up doing a second survey, a longer-term survey, that was published in the Lancet eClinicalMedicine journal in July of 2021 and documented over 200 symptoms of Long COVID. We have been doing a variety of different research projects consulting on Long COVID research and advocating for people with Long COVID since then. Now we’re a full organization. I work there full-time now.
AmNews: Given all the work that you’ve done, do you have thoughts about ultimately what Long COVID is?
McCorkell: It is likely several different things. I think we have good clues as to what some of the underlying mechanisms are. When we examine known persistent reservoirs of viruses, reactivations of old viruses, we see that in many other chronic conditions like MS that have some overlapping symptoms. I was able to get my blood tested for microclots and that’s something (found in) the small studies that have been done: 100% of Long COVID patients have microclots.
That’s kind of a middle step, (but it’s) obvious that’s not the cause. Something is causing the microclots, but I think that’s going to be a good clue to what’s going on with blood clotting and endothelial dysfunction. I think it’s going to end up being a few different things. If we’re having endothelial damage consistently to our bodies because of these microclots, that’s going to potentially lead to fairly significantly bad outcomes later on.
AmNews: Where are we currently with Long COVID?
McCorkell: I think especially in the context of this study, it’s clear that Long COVID is a very serious outcome of a COVID infection and other studies have shown that re-infection increases your likelihood of getting Long COVID. The best way to not get Long COVID is to not get COVID.
AmNews: What else do you want our readers to know about COVID?
Especially if people aren’t online or don’t want to join online groups, there is a book called The Long COVID Survival Guide. It has stories and advice from 20 people with Long COVID, including myself, and it’s like a support group in book form. It also walks through how to get a diagnosis, common symptoms, best ways to treat, and how to deal with stigma, so I think this is a good resource and we’re trying to get it into libraries, so it’s more available.
AmNEWS: Are there any final words you would like to say to our readers?
McCorkell: So many people are forgetting about Long COVID. In Black and brown communities, there’s a lag in terms of resources, so even if COVID were starting to dissipate, there would still be a lag in Black and brown communities. We would still need to keep up with it. It’s not going away.
If you are recovering from #COVID19 or experiencing #LongCOVID, you can call 212-COVID19 to receive specialty care or visit www.nychealthandhospitals.org/services/covid-19 to learn more about NYC’s COVID-19 Centers of Excellence in Tremont, Jackson Heights, and Bushwick.
For additional resources about COVID-19, visit www1.nyc.gov/site/coronavirus/index.page. COVID-19 testing, masks, and vaccination resources can also be accessed on the AmNews COVID-19 page: www.amsterdamnews.com/covid.