Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
Joined November 2020
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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/ar… 1/
Patient-Led Research Collaborative retweeted
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
Patient-Led Research Collaborative retweeted
Mitochondrial carbonic anhydrase–VB inhibition rescues brain endothelial stress and memory in Alzheimer’s disease models | @ScienceAdvances science.org/doi/10.1126/scia…
Patient-Led Research Collaborative retweeted
Our new work using virus-specific T cells as biosensors in Long COVID. These data point to viral persistence detected by T cells and some level of T cell exhaustion. Excellent work by @markmpainter biorxiv.org/content/10.64898…
Patient-Led Research Collaborative retweeted
New preprint - "The Extracellular Matrix is Potentially a
Key Regulator in Long COVID, Hypermobility Disorders, and Related Conditions."
preprints.org/frontend/manus… #LongCovid
Patient-Led Research Collaborative retweeted
Did you know that in the incredible Invisible Illness TOPx @HHSGov Tech Sprint, our team is the only one with a core microscopy component? Please register to vote! invisibleillness.crowdicity.… or learn more at: talresearchgroup.mit.edu/mae…
Patient-Led Research Collaborative retweeted
We are trying to get a clearer picture of the relationship between ME/LC and connective tissue disorder. If you are affected by this combination, we would be grateful if you could take the poll and if possible provide details. Retweets also much appreciated, to increase reach! 🙏🙏🙏
If you have #ME or #LongCovid AND (suspected) #hEDS or another connective tissue disorder: Did you already have signs of hypermobility, joint or muscle pain, easy bruising, or other connective tissue symptoms BEFORE developing ME or LC?
Comments are much appreciated!
58%yes
19%no
23%👀
278 votes • Final resultsNew 4YouAndME & PLRC paper in @JMIR_mHealth: a co-design framework for 5 patient-built health apps for complex diseases, including #LongCovid. Open code. Free for other teams to build on. 🧵mhealth.jmir.org/2026/1/e854…
Patients also pushed hard for customization — #LongCovid doesn't look the same from person to person, so the app was built to flex to individual symptom presentations rather than force a single template. 5/
Full framework + code: mhealth.jmir.org/2026/1/e854…
A resource for #LongCovid and other patient communities to build their own tools. 6/
Patient-Led Research Collaborative retweeted
Incredible new paper from PLRC member @chloedecanson:
"I present a case study, that of myalgic encephalomyelitis... the medical aspects of the illness are on the whole better understood by sick people than by their doctors." 1/
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson
Incredible new paper from PLRC member @chloedecanson:
"I present a case study, that of myalgic encephalomyelitis... the medical aspects of the illness are on the whole better understood by sick people than by their doctors." 1/
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson
"So, in sharp contrast to the widespread conception of sick people as medically ignorant and unscientific, they as a group have knowledge of the aetiology, pathophysiology, and treatment options for their illness... that is the product of a complex scientific process" 12/