Hello! Welcome to Patient-Led Research Collaborative’s (PLRC) Quarterly Newsletter — this puHello! Welcome to Patient-Led Research Collaborative’s (PLRC) Quarterly Newsletter — this publication goes out four times a year to bring you the latest updates on PLRC’s work and critical updates on Long COVID and associated conditions.
This issue covers:
- Long COVID Fact Sheet & LC Awareness Day
- Advocacy Updates
- Introducing New PLRC Staff
- Three New PLRC Papers
- Reinfections Study — Need More Participants!
- Thank you to Lisa McCorkell
If you have been forwarded this email and would like to continue to hear from us:
New Long COVID Fact Sheet and LC Awareness Day Highlights
Last month we marked five years since the start of the COVID-19 pandemic, and with it, five years since the onset of Long COVID for millions of patients around the world. We know this global public health crisis isn’t winding down and more people are developing Long COVID each year.
This year for Long COVID Awareness Day (LCAD), we have compiled a fact sheet of up-to-date Long COVID facts and statistics backed by research. Data is one of the most powerful tools in strengthening understanding of Long COVID, and we hope this can be helpful to our community. There are 19 key figures, including updated information on prevalence, reinfection risk, recovery rates, quality of life, economic impact and more. Please use and share widely!
In addition to the fact sheet by PLRC, here are a few other community resources and highlights from 2025 LCAD:
- A comprehensive IACC community resource guidereleased by Long COVID Alliance, of which PLRC is an executive committee member. The guide includes information on infection-associated chronic conditions, patient and caregiver resources, and general resources such as specialists and support services.
- PLRC member, Julia Moore Vogel, wrote an op-ed in US News, reflecting on the public health lessons learned and advocating for pandemic prevention policies such as vaccination, improved ventilation and masking.
- PLRC co-founder and co-lead, Gina Assaf spoke in appreciation of the Long COVID community in an essay by Miles W. Griffis, Long COVID patient and co-founder of The Sick Times,republished by Katie Couric. In the essay, Miles writes: “While much of society does not consider or advocate for us, we continue to deliver the news and share our stories, study after study, life-changing case after life-changing case, to warn them about the lack of safety nets and cures once you develop Long Covid.”
Advocacy Updates: Cuts to Long COVID, Community Action, and HHS Memo
Over the past weeks we have seen a number of federal level austerity cuts in research, health and support services, including chilling attacks on Long COVID. The Office of Long COVID Research and Practice and the Advisory Committee on Long COVID have both been terminated, and last week 45 Long COVID grants at the NIH were rescinded without explanation.
Some of the grants were restored in the same week after an incredibly swift and fierce response from the patient community. We are grateful for the efforts of the patient community, including PLRC members and Long COVID partner organizations, and would like to thank anyone who stepped up to contact your representatives. Your amazing efforts restored funding to critical studies on the pathobiology of Long COVID and on Long COVID in children. Further reporting on the saga can be found in these pieces from The Sick Times and Salon.
However, the cuts to scientific research and firing of lead scientists is ongoing and gravely concerning, and suggest the administration is deprioritizing this public health crisis. We urge everyone to keep taking action through the two initiatives below — led by our partners Long Covid Campaign and COVID-19 Long Hauler Advocacy Project:
We will keep working to find ways to move our work forward and hold the actions of this administration accountable. A few additional advocacy updates include:
- PLRC submitted an NIH Request For information seeking feedback on the NIH Strategic Plan for Disability Health Research.
- In February, PLRC wrote a memo to HHS outlining key public health priorities for Long COVID across the federal government, highlighting critical programs in the CDC, NIH, FDA and more.
- PLRC also participated in the first congressional briefing held by the American Association of Immunologists focusing on Long COVID.
Meet New Staff: Partnerships & Advocacy Coordinator / Operations & Fundraising Manager
We’re thrilled to welcome two new staff members to PLRC who will be working on our fundraising and advocacy efforts. Please welcome Kate and Katie!
Fundraising & Operations Manager — Kate Alexandria
Kate Alexandria is a Los Angeles-based writer and strategist with over a decade of experience in development and organizing. She’s joined PLRC to help lead fundraising efforts at this critical time for our organization and for the entire Long COVID community. A fellow spoonie, Kate has had dysautonomia her whole life and got MCAS and CRPS after 2020. She’s written about disability justice, institutional corruption, and more in outlets like Women’s Media Center, KnockLA, HuffPost, and beyond. Kate is excited to put her expertise to good use at this vital moment and is thrilled to be part of the PLRC team.
Partnerships & Advocacy Coordinator — Katie Drackert
Katie Drackert is an advocate dedicated to creating a better world for people with Long COVID and IACCs by driving communal and institutional change. They have presented testimony to federal and statewide agencies, pioneered a mutual aid clean air model in the South — Clear The Air ATX, the second clean air organization in existence and the first in the region — and developed resources to help organizations deepen their commitment to and education on the intersections of post-viral illnesses and disability justice. With the goal of embodying Toni Cade Bambara’s call to “make the revolution irresistible,” Katie brings a wealth of experience at the intersection of art and advocacy, fostering tangible, community-led solutions that center care, education, and accessibility
PLRC Co-Authors Three New Papers
PLRC patient-researchers co-authored three new papers resulting from our collaborative work with academic researchers in multiple countries. Much of PLRC’s work to advance Long COVID research involves contributing to study design and interpretation by integrating lived experience expertise and data. Explore the key findings from these three papers below:
1. Paxlovid treatment within 5 days of a COVID-19 diagnosis reduced hospitalization by 39% and death by 61%—including among vaccinated and younger patients—even during the Omicron variants era. However, Black and Hispanic/Latino patients were less likely to receive Paxlovid than White and Asian patients, highlighting persistent disparities in access to care. This study was a collaboration between scientists from the National COVID Cohort Collaborative (N3C) and PLRC members Megan Fitzgerald and Hannah Davis. Full study in PLOS Medicine here.
2. The Episodic Disability Framework––originally developed for HIV––provides a way to describe the experiences of people with Long COVID with health challenges that fluctuate and come and go in unpredictable ways, sometimes even within the same day. The findings support recognizing uncertainty as an integral component of disability experienced among people with Long COVID. PLRC was represented by Hannah Wei and Lisa McCorkell in this collaboration with academics and patient-researchers from partner organizations in the US, Canada, UK, and Ireland. Full study in PLOS One here.
3. In Brazil, Long COVID care falls within a cycle of invisibilization, where patients’ needs are under-recognized and downplayed, and resources aren’t allocated to support them. Contributing factors include an overburdened health system, limited provider knowledge, and the underestimation of Long COVID’s serious impact on health and quality of life. This paper is the result of a collaboration between PLRC member Letícia Soares and researchers in Brazil, the US, and the UK. Full study in BMJ Global Health here.
Visible Reinfections Study — Still Recruiting!
PLRC has partnered with Visible on an in-app research study to understand how reinfections affect baseline symptoms of people with Long COVID and ME/CFS.
We’re currently in need of more participants for this study! Your experience and insight are key to uncovering vital information that could lead to better treatments and support.
To participate in the Visible study, you can opt-in to share your anonymized data with PLRC from within the Visible app. Simply go to the Research section in the Community tab to enroll. You can enroll in this study through August of this year.
We hope you will consider joining this initiative to shed light on the impacts of reinfections. Participating in research is a powerful way to fight back against Long COVID and ME/CFS!
Thank You Lisa!
March 5, 2025, marked Lisa McCorkell’s last day in her role at PLRC. As PLRC co-founder and co-lead, Lisa dedicated the past five years to advancing research, advocacy, and policy for people with Long COVID. Her unwavering commitment, compassionate leadership, and thoughtful brilliance have left an indelible mark on our community.
The impact of Lisa’s work extends far and wide, from testifying before Congress to ensure Long COVID was recognized as a national priority to spearheading calls for the U.S. government to invest $1 billion annually for ten years in a Long COVID moonshot,pushing for bold investments in research and treatment. Her work has shaped not only PLRC but also the broader landscape of Long COVID policy and science.
Lisa spoke with The Sick Times in this powerful piece, reflecting on the work we’ve done together over the past 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.”
We are profoundly grateful for Lisa’s contributions to patients, clinicians, researchers, and partners across industry and government. Her legacy will continue to guide and inspire us.
Read, Listen, Watch & More
- Read: New PLRC publication in Nature Communications Medicine highlights a case series on the use of Paxlovid in Long COVID.
- Read: Washington Post, “‘Something was wrong with my brain’: How covid leaves its mark on cognition”
- Watch: Project Echo presentation explaining latest LC research with PLRC co-founder Hannah Davis and member Kathleen Banks
- Read: The Sick Times, “Long COVID data are being erased, again”
- Watch: Demystifying Conference, presentation on COVID reinfections by PLRC co-founder Gina Assaf & co-lead Letícia Soares
- Listen: Long Covid The Answers podcast ft. PLRC co-founders Gina Assaf, Lisa McCorkell & co-lead Letícia Soares
- Read:Chemical & Engineering News, “Long COVID studies stymied by pharma’s lack of cooperation”
- Read: LA Times, “Long COVID is solvable, but we need more clinical trials”
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In solidarity,
Team PLRC
PS. Please reach out to team@patientledresearch.com to collaborate with our team or sponsor future Journals.