Long Covid Studies: The Origin Story
It all started with a tweet.
Long Covid Studies started with a tweet. This tweet, to be specific:
Like most people, I spend more time scrolling through feeds than I like to admit. And most of the posts I see online are fleeting. But this tweet by Long Covid advocate Meighan Stone stuck with me. Once I saw it that fateful evening last September, I just couldn't stop thinking about it.
I went to sleep that night thinking about what it would take to build an app to help people with Long Covid find clinical trials.
I woke up the next morning brainstorming the features it would need.
I spent the rest of the day thinking about its technical feasibility and architecture.
The next day, I wrote the first lines of code.
And on March 26, 2024 – 6 months later – I finally launched Long Covid Studies into the world with a feature (and collaborative data analysis project) in The Sick Times.
Why Long Covid Studies?
I've been struggling with Long Covid ever since my September 2022 Covid infection. My infection was life-changing – it completely transformed how I relate to myself, my community, and my future.
Since then, a big part of my grief/coping process has been to understand as much as I can about the science of and research into Long Covid. Although there are still more questions about Long Covid than there are answers, the research breakthroughs help me understand what might be going on in my own body. And the passion, creativity and commitment that many researchers have brought to the field is comforting – inspiring, even.
In a small way, I've tried to do my part, too. I've participated in several research studies and now two clinical trials. And I've discovered that participating in research has been deeply meaningful. I’ve felt seen and cared for by the scientists running these studies, in a way I haven't otherwise felt in the healthcare system. And I've felt the power that comes with using my agency to do something productive with my misfortune – even if I'm putting my body on the line in the process.
But it is hard to find research studies. And it's even harder to find good ones. I learned about my first clinical trial through word of mouth, and my second by trying and failing to enroll in RECOVER (the large NIH Long Covid study) after it was already full. For researchers to solve Long Covid, they'll need to recruit thousands of Long Covid patients into hundreds of studies. And for these studies to be effective, their cohorts will need to reflect the diversity and complexity of the Long Covid community.
Long Covid Studies is my attempt to address this problem. It should be easy for people with Long Covid to find ways to engage in research, and it should be possible for researchers to recruit the study participants they need. My hope is that Long Covid Studies, as a platform to bridge these gaps, is a first step to realizing this goal.
But making an already-existing dataset more accessible is just the beginning. I’m excited to expand the capabilities of Long Covid Studies to bring more transparency, context, and clarity to Long Covid research for patients, advocates, and researchers alike. So stay tuned!
This Newsletter: What to Expect
This is my first Long Covid Studies newsletter, and I'm a little embarassed to admit that this draft has been sitting in my drafts since February.
My goal is to write every 1-2 months, and to cover several topics: the behind-the-scenes successes and challenges of building a digital platform, collaborations with other organizations, new developments in Long Covid clinical trials and research, and personal notes on living with a chronic illness. So this won't be your usual corporate newsletter – after all, I'm not a corporation, just one sick person trying to do something useful in my free time.
I'd love your thoughts and suggestions as I find my voice. Please feel free to share this newsletter with others.
Many, Many Thanks
There are so many people who have supported me while I've gotten Long Covid Studies off the ground. I’d like to recognize a few of them here.
Many thanks to Nikolas and Ním (and all of Rollerblade) for their guidance as I dove into the world of modern Javascript, and for encouragement when I got stuck along the way. To Lisa, Hannah, Julia, and everyone else at the Patient-Led Research Collaborative, who shared encouragement and feedback at the exact moments I needed it, and gave me the strength to keep working when I was ready to give up. To everyone on the Long Covid Moonshot team, who gifted me solidarity and hope in the face of existential challenge.
To Marcin, who is a true creative force for good and offered gentle, perceptive guidance when I was struggling with visual design. To JLord, who has been a true friend and source of strength throughout my illness ordeal. To Nina, who understands the challenges of a busted brain, and has shared her insights on the inner workings of government. To Charlie and Jessica, who have helped me parse out the latest research findings and gave me a space to vent. To Fruits and Vegetables Club (fka Candy Club), F4TRR, Vibe Quest, Café con Amigos, Traitor's Turrret, Phone Backgrounds Etc., and the other group chats that have kept me sane. To the Tabscord, one of the only sources of light on this here internet.
To all of the friends and family who have been with me as I've adjusted to life with chronic illness. To the kind members of the Long Covid community who have used their limited energy and resources to contribute to research. To the folks who have generously contributed financially to Long Covid Studies, so I can keep the servers running.
And finally, to the researchers tirelessly working to collaborate with patients to understand the root causes of Long Covid to find treatments and, one day, cures.