Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!

Joined November 2020
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/
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Patient-Led Research Collaborative retweeted
We met with Shionogi to Answer Your Questions about access to #Xocova (Ensitrelvir), a PEP (post-exposure prophylaxis) used to try to prevent a #COVID-19 infection after an exposure. Several studies are also underway evaluating its potential to prevent and treat #LongCOVID. Here is what we learned:
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For anyone getting into biology, please consider taking airborne disease resistance more seriously. It's a super important area of medicine that is a huge cause of death and sickness but easily gets forgotten. We're likely to get many more airborne plagues in the future due to the combination of not just extremely dense and interconnected society (including city and farm animals), but also accidents from bio research and offensive biotech (both from random people and from secret government programs that can easily get themselves exempted from safety restrictions), all enhanced by powerful AI. Right now, this area is getting way less love than longevity research (which continues to be super important!), but it's an area where there are lots of unclaimed wins that we know exactly how to do (but are not yet doing) with present-day tech: * early detection * passive universal testing * filtration/ventilation/UVC * better vaccines (including making them open source and open science) * cryptography to make all of the above privacy-preserving We can have China-level pandemic resistance with Sweden-level limited intrusion into people's lives, and then go even further. We just have to actually do the work for it.
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Gisteren verscheen er een stukje in Men's Health @MensHealthMag over ons onderzoek, en waarom ook profatleten long covid kunnen ontwikkelen (en hoe je het kunt onderscheiden van overtraining/gewone vermoeidheid): menshealth.nl/nieuws/wat-is-… #coverboy :)
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Mitochondrial carbonic anhydrase–VB inhibition rescues brain endothelial stress and memory in Alzheimer’s disease models | @ScienceAdvances science.org/doi/10.1126/scia…
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New preprint - "The Extracellular Matrix is Potentially a Key Regulator in Long COVID, Hypermobility Disorders, and Related Conditions." preprints.org/frontend/manus… #LongCovid
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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 results
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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
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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
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"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/
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