Patient-Led Research Collaborative

We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID! Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more. sciencedirect.com/science/articl… 1/

Are you experiencing post-exertional malaise (PEM): flare of symptoms and/or appearance of new symptoms after exertion, sometimes delayed after triggering event? See our pacing guides: Adult, Pediatric (w/ @LCfamm) & clinician (w/ @Patientled). meaction.net/pacing-and-man… #LongCOVID

I'm working on a story for @thesicktimes looking at the new HHS Long COVID webpage and what else federal health agencies have done to address the disease since RFK Jr.'s roundtable event six months ago. Email/message me if you have comments (contact info is in my bio).

LMU Munich, 83 children and teens, Long COVID was linked to fewer tiny blood vessels and stiffer arteries. Kids with shortness of breath showed the clearest vessel loss, suggesting symptoms may partly stem from impaired circulation. link.springer.com/article/10.100…

@loscharlos @patientled Thanks for sharing 🙏 March 29 2020 I took my last walk. I can work full time, which I’m extremely thankful for, but the cost is huge. No energy for anything else, constant pain. But I remain hopeful- medication will eventually come, one day we’ll all dance again 💪Hang in there!

6 years ago today I went on my last run (pic left) — today I’m 36 and I’ve spent my entire 30’s with #LongCovid struggling to walk up and down the block, or work more than 1-2 hours a day. Heres 4 things I never thought I’d lose at this age:

How the Covid Disinformation Ecosystem was established Network mapping the international network's development in 2020, with a particular focus on the UK. open.substack.com/pub/counterdis…

Long Covid has pushed the scientific community to address something medicine has struggled with for decades: complex chronic illness that affects multiple systems at once, often impacted by impaired Neuroimmune crosstalk. I appreciate the framing from two years ago, but we can no longer remain in this place of terms and definitions. Patients Can't Wait. They are suffering in ways that are truly indescribable. Endless pain, inability to get out of bed, painful digestive issues that put them in the ER on a regular basis. Enough is enough. We are now at a point where data, technology and neuroimmune science are converging and can move forward rapidly for patients: to determine biological subtypes, identify measurable biomarkers, and establish clinical endpoints that reflect the underlying physiology of patients - not one size fits all approaches. What is missing? I'm going to say it. FUNDING. Without serious investment and support from the philanthropic community, progress toward diagnostics and treatments for Long Covid and related conditions such as ME/CFS, chronic migraine, IBS, and others will continue to stall. Please consider donating to @CODA_research or to other high-quality research organizations today! Let's come together as patients and demand more. #LONGCOVID #MECFS #POTS #MIGRAINE #SJOGRENS #EDS #MCAS #CHRONICPAIN #FIBROMYALGIA #ENDOMETRIOSIS #IBS #GATROPARESIS #NEUROIMMUNE #PATIENTSCANTWAIT #LONGCOVIDAWARENESS

#LongCOVIDAwarenessDay happens to be my #COVID anniversary.  Six years ago today, I woke up sick. Not sick enough for the hospital, as we saw plastered all over the news. Not sick enough to die, acutely. But sick enough to get worse after returning to work as a firefighter/paramedic, progressively worsen, and become disabled.  For six years, I have been waiting for the day it gets better. The day I get better. I have been waiting for the research breakthrough that gets hundreds of millions across the world their health and their lives back.  Instead what I see is a world woefully ignorant of the long-term consequences of COVID-19 infection. I see a world that lacks empathy for those suffering and the inability to reflect on the fact that one day it can be them, their partners, children, parents, best friends.  But perhaps it still wouldn’t matter to some. In fact, I know it doesn’t because I, like many, have seen the very people we considered closest quite literally run the opposite direction simply to avoid the topic of COVID-19, chronic illness, and disability. I mean, we’re talking about gymnastics that even Simone Biles couldn't master simply to avoid us and the topic. Then, I have to sometimes take a step back from the anger, from the tears, from the confusion that I am left with when I do not understand, how they do not understand. And then I get more angry.  Over the last six years, our global governments have done nothing to disseminate public health education about #LongCOVID. No commercials on tv, radio, or social media, no directive to state and local health departments.  Over the last six years, governments and health systems have failed to mandate clinician education on Long COVID or integrate it into medical school curricula, licensure, and recertification requirements.  Over the past six years, governments around the world have largely failed to confront the systemic impacts of COVID-19 and Long COVID — including rising disability, workforce disruption, educational loss, economic instability, national security concerns, strain on healthcare infrastructure, increased mortality, and profound effects on families and communities. As a result, the world remains largely unaware that Long COVID can affect nearly every organ system in the body, contributing to cardiovascular injury, immune dysregulation, neurological impairment, respiratory dysfunction, endocrine and metabolic disruption, renal and gastrointestinal disease, reproductive health issues, clotting abnormalities, and more, including death. Clinicians remain unprepared to recognize and treat this complex disease. Key research and policy decisions have too often excluded the patients and frontline experts whose perspectives and experience are essential—leading to missed signals, misdirected resources, and delayed progress in addressing a crisis affecting millions. TRIGGER WARNING:  Over the past six years, patients have given their lives to #LongCOVIDAwareness and advocacy because we feel that if we do not, we will surely die. This is not an exaggerated statement. No one is coming to save us but us.  Many in charge believe the pandemic is over and that the incidence of Long COVID is decreasing. The data from the program the government funded, shows the exact opposite across various electronic health record systems. The FRED disability data, with an increase in disability by 35% since 2020, shows the exact opposite. Yet, programs have disappeared. Funding has disappeared. Our friends, family, and fellow community members have disappeared.  I cannot comprehend, how with the data that we have, and the clear indicators of this public health crisis across spectrums, and the impacts it will have for decades to come, how those in leadership fail to respond to this crisis at the urgency and scale it demands.  1/ This is a long one, you can read it all here: docs.google.com/document/d/1ON… #LongCOVIDAwareness

Spokesman-Review: “Six years later, COVID symptoms linger for many Latino farmworkers in Washington” spokesman.com/stories/2026/m…

For #LongCOVID Awareness Day, we’re calling out the myths. Misconceptions about Long COVID still hinder care. With the EU, WHO/Europe co‑created Long COVID Mythbusters with patients and experts—pairing harmful myths with real stories. 👉 Mythbusters: bit.ly/3O6Ji3X

The #LongCovidAwarenessDay (today) is important because in many countries and regions around the world, long COVID is not discussed and people are suffering in isolation. Awareness is needed to improve diagnosis, medical care, research, and support of patients 💙

I've been debating posting this all day, but here goes. It's ironic that #LongCovidAwarenessDay falls on Mother's Day this year. #LongCovid has likely taken away any chance of me having a child. Thinking of anyone grieving that today, I see you 🫶

It's Long COVID Awareness Day. Americans are still grappling with COVID’s repercussions, including Long COVID. I'll keep working to support research and education on this condition and other infection-associated chronic conditions.

Adding an accessible text-only version here: patientresearchcovid19.com/2026-long-covi… 17/

Translations will be available soon. If you’d like to translate this to another language, please email us at team@patientledresearch.com! 16/

We hope this Fact Sheet will be helpful to the community, and send the community our love and solidarity during this month! patientresearchcovid19.com/2026-long-covi… 15/

Finally, the vast majority of the public (76%) and physicians (82%) believe #LongCOVID needs more research funding! 14/

Research studies have described hundreds of #LongCovid biological abnormalities. We list up-to-date studies & review papers on the scope of mechanisms & therapeutics, viral persistence, targeting persisting reservoirs, designing & optimizing clinical trials, and others. 13/

Long COVID disproportionately impacts people from already marginalized groups and low-and-middle income countries. Medical provider education about #LongCovid is inadequate. Lack of public awareness is causing crucial delays in care and support. 12/

COVID is associated with reproductive health and fertility disorders including menstrual changes, endometriosis, erectile dysfunction, decreased semen quality and motility, and others. 11/