Patient-Led Research Collaborative

Join World Health Organization and Project ECHO for webinars for international clinicians: "Post COVID-19 condition: Science, Research and Policy" Hear an update on global scenario of research on post COVID-19 condition, what we have learnt so far, and initiatives to support patient care with #LongCOVID. Featuring speakers Lisa McCorkell and Hannah Davis of PLRC Wednesday (20 November) 16:00 – 17:00 CET Thursday (21 November) 22:00 – 23:00 PET/COT?? Friday (22 November) 08:30 – 09:30 IST Available in English, Spanish, French, Portuguese, and Arabic. Supported by Schmidt Initiative for Long COVID Register here: https://lnkd.in/gs3sQVzF

Our co-founder Lisa McCorkell is quoted in STAT on how the new administration may impact the future of #LongCOVID "The Trump administration must prioritize ensuring.. there is significant research funding for long Covid and other infection-associated chronic conditions to get us to treatments and cures. These issues do not just impact one party — we’ve seen bipartisan support in Congress, and we’ll need additional leaders to step up to address this crisis across government." #InfectionAssociatedChronicConditions

People with #LongCOVID deserve equal access to prescriptions that could lessen their symptom burden and information about potential risks. More about how & why in this op-ed by me and Charlie McCone which was sparked by a discussion the Patient-Led Research Collaborative team: https://lnkd.in/geDWQbCc Special thanks to Lauren Fish and Romina Ortiz for their help with this piece. It shouldn't have a paywall but may require creating a free account.

People with #LongCOVID deserve equal access to prescriptions that could lessen their symptom burden and information about potential risks. More about how & why in this op-ed by me and Charlie McCone which was sparked by a discussion the Patient-Led Research Collaborative team: https://lnkd.in/geDWQbCc Special thanks to Lauren Fish and Romina Ortiz for their help with this piece. It shouldn't have a paywall but may require creating a free account.

ICYMI NEW PAPER: "A call from patient-researchers to advance research on long COVID" in Cell by Cell Press PLRC members -- all with lived experience of #LongCOVID and related #InfectionAssociatedChronicConditions -- discuss meaningfully incorporating patients as full collaborators to solve these conditions and give guidance towards desperately needed treatments. THANK YOU to the researchers and clinicians who tirelessly work with us to advance the field. ?? We look forward to expedited progress as we break down silos and expand partnerships. ?? Full article: https://lnkd.in/gFxEXs-Z Authored by PLRC members: Megan L. Fitzgerald, PhD Alison Cohen Toni Jaudon Julia Moore Vogel Abby Koppes PhD Lucia Santos Rachel Robles Jerry Lin JD Davids Chris McWilliams Signe Redfield Kathleen Banks María Richardson Teresa T. Akintonwa Beth Pollack Ezra S. Aimee Weiss Gina Assaf Hannah Davis & Lisa McCorkell #patientled #patientresearch #patientresearchers Cell Press Med by Cell Press

Introducing the Long COVID Research Moonshot Act of 2024 (H.R.9907) in the US House of Representatives. The Act calls for $10 billion in funding to accelerate research and improve treatment of #LongCOVID. Patient-Led Research Collaborative helped to deliver this legislation. From our co-founder Lisa McCorkell igniting this effort with her Nature Portfolio op-ed first calling for a Moonshot with Dr. Michael Peluso in 2023, to educating Congressional offices' on the community's most pressing policy needs, to ensuring all voices in the IACC community were heard throughout this process. Thank you to the 21 co-sponsors, including co-leads Representatives Ilhan Omar and Ayanna Pressley. Read the Bill: https://lnkd.in/eFTERD-2 Senate companion bill (S.4964) was introduced to the US Senate in August 2024, co-sponsored by Senators Sanders, Duckworth, Kaine, Markey, Tina Smith, and Peter Welch. Call your representatives to co-sponsor the Senate and House bills: https://lnkd.in/eYJR-UWV #InfectionAssociatedChronicConditions #LongCovidMoonshot #NIH

NEW PREPRINT "Multi-method #phenotyping of Long COVID patients using high-dimensional symptom data" under review at Nature Portfolio Patient-Led Research Collaborative analyzed a dataset of 162 symptoms in 6,031 participants to explore making clusters of #LongCOVID patients using three #MachineLearning methods: genetically optimized deep learning model, ensemble clustering, and probabilistic modeling. We found that consistent clusters were *not* discovered across the three methods. This implies: ? symptoms may not be the best way to create phenotypes of Long COVID patients ? studies that use fewer symptoms, fewer patients, or only use a single clustering methodology might be detecting phenotypes that are not robust or repeatable Still, we found symptom burden consistencies across all methods:? ? Low symptom burden clusters were associated with higher age & lower proportion of men ? High symptom burden clusters were associated with lower age, women, & higher severity of physical & cognitive PEM Full paper: https://lnkd.in/ecmqPKsV Co-Authored by PLRC members Tessa Green Chris McWilliams Leo de Figueiredo Letícia Soares Beth Pollack Alison Cohen Tan Zhi-Xuan Tess McEnulty Falor, PhD Hannah Davis #InfectionAssociatedChronicConditions

NEW PUBLICATION: “A call from patient-researchers to advance research on Long COVID,” published in Cell and authored by PLRC members, all with lived experience of #LongCovid and related infection-associated chronic conditions. In the commentary, we discuss how incorporating patients as full collaborators will be crucial in advancing progress towards Long COVID treatments and cures, and in fact some of the key findings to date have been due to patient insight and collaboration. We too often spend energy refuting the framing of Long COVID as psychological, psychosomatic, or due to deconditioning, despite the clear scientific consensus that Long COVID is biologically driven and an often disabling illness that continues to threaten the public’s health. These framings alienate patients and allocate precious limited resources to dead-end hypotheses rather than evidence-backed trials. We propose strategies for bridging existing gaps in communication between patients, researchers, clinicians, funders, journals, schools, and professional organizations, which includes accounting for the specific needs of Long COVID patients, like considering the impact of post-exertional malaise and including patients who are more severe, and carefully considering inclusion and exclusion criteria. Achieving what is needed to solve Long COVID and all IACCIs requires meaningful engagement of patients in research, with funding dedicated to these efforts; diverse, representative, and global studies; and significant, sustained governmental and private investment. Read the article for more!? https://lnkd.in/g5bn59Bi Authored by: Megan L. Fitzgerald, PhD Alison Cohen Toni Wall Jaudon Julia Moore Vogel Abby Koppes PhD Lucia Santos Rachel Robles Jerry Lin JD Davids Chris McWilliams Signe Redfield Kathleen Banks María Richardson Teresa T. Akintonwa Beth Pollack Ezra S. Aimee Weiss Gina Assaf Hannah Davis & Lisa McCorkell

NEW PREPRINT: "#LongCOVID and associated outcomes following COVID-19 #reinfections: Insights from an International Patient-Led Survey" Bottom line: the odds of Long COVID increase with reinfections. Highlights include: ? Those who had 2 COVID infections were 2.14x more likely, and those who had 3 or more COVID infections were 3.75x more likely to report Long COVID than those with one infection.? ? #FatigueSeverity increased with reinfections, as measured by the Fatigue Severity Scale. ? Increased odds of having limitations to #PhysicalFunctioning, including bathing and dressing limitations, limitations to moderate activity such as pushing a vacuum cleaner, and social limitations. ? Reinfections increased the odds of reporting #PoorImmuneHealth, including having had many other infections and taking longer to recover from common infections. ? The number of #vaccines prior to an infection reduced the odds of Long COVID, but their protective effect was diminished by reinfections. Full preprint: https://lnkd.in/gTQctu54 Authored by PLRC members Letícia Soares Gina Assaf Lisa McCorkell Hannah Davis Alison Cohen Janna Moen, PhD Lauren Shoemaker Leo Liu Daniel Lewis Rachel Robles Chris McWilliams Jerry Lin Teresa T. Akintonwa André Saravia Hannah Wei Megan L. Fitzgerald, PhD #InfectionAssociatedChronicConditions #CovidReinfections #COVID19

Are you ready for our 2nd Med Ed Monday? We are excited to share the second video in our four-part series focusing on post-exertional malaise (PEM) and pacing created in collaboration with Patient-led Research Collaborative and MEAction. Our second episode focuses on implementing pacing to prevent PEM with Dr. Todd Davenport (one of our favorite physical therapists!) https://ow.ly/mj3u50Tnn1e Patient-Led Research Collaborative "Post-exertional malaise is an abnormal recovery response to some kind of exertion." Dr. Todd Davenport. Todd E. Davenport, PT, DPT, PhD, MPH, OCS serves as tenured full Professor in the Department of Physical Therapy in the School of Health Sciences at the University of the Pacific in Stockton, California, where he teaches in and serves as Vice Chair of the Doctor of Physical Therapy (DPT) program. Each video is an interview with an expert in the field and is conducted by Chimére L. Sweeney*, a Long COVID author, speaker, filmmaker, and writer. We will be sharing a new video each Monday in September and they will be tagged #MedEdMonday. #PwME #LongCovid #MECFS #medEd #StopRestPace Image description: Graphic with new video written repeatedly with an arrow pointing to the text: "Implementing Pacing to Prevent PEM - Dr. Todd E. Davenport New Video for #MedEdMonday." Each corner has a log- Patient Led Research Collaborative on the left and MEAction on the right.