We are a self-organized group of COVID-19 long-haul patients working on patient-led research around the Long Covid experience. By the most conservative estimates, Long Covid currently affects 2.6 million people around the world. We originated out of the Body Politic Covid support group, and work closely with them as well as other Long Covid support groups. Most of got sick in March 2020, before we knew anything about prolonged recoveries, and most of us are still sick nearly six months later.
Our backgrounds are all in research and related fields: participatory design, neuroscience, public policy, data collection and analysis, human-centered design, health activism. And we all have intimate knowledge of COVID-19. Our goal is to collect and distribute data on those with COVID-19 prolonged recoveries – a group that has so far been under studied – to both the general public and to medical professionals.
Our first report was the first study on Long Covid, published on May 11th 2020. We found information not yet discussed in the media, in addition to confirming that Long Covid existed and was prevalent. Some examples:
1. We found that Long Covid symptoms are systemic, not respiratory - spanning the cardiovascular, neurological, general immune, and gastrointestinal systems as well.
2. We found that neurological symptoms are common and underreported, with brain fog and cognitive dysfunction being as common as symptom as the cough.
3. We also found that symptomatic people who tested positive and symptomatic people who tested negative were different not in symptoms, but how early they got tested, suggesting that testing is not capturing a large subset of those with COVID.
We actively worked with the press to get this information into the public. Our research contributed to the first pieces of media on the subject, including Ed Yong's Atlantic article "COVID 19 Can Last for Several Months" in June 2020, and dozens of others since. Our first report has been cited four times by the renowned British Medical Journal, and by Fatigue medical journal. Our team and patient-led approach has been written about by the MIT Technology Review, Australia Broadcasting Company , and others.
We have presented our research to the director general Dr Tedros Adhanom Ghebreyesus and other members of the WHO , to the CDC, and to the NIH, which resulted in an article about our research from Dr Francis Collins himself.
We've consulted for organizations and research institutions, including from major universities such as Johns Hopkins and Harvard.
Finally, our research has informed the care and treatment for those with Long Covid .
We have done all of this while being sick, between trips to the emergency room, and amidst the confusion of not knowing what is happening to our bodies.
What we're working on now:
We're currently releasing our second survey, which focuses on 4 key areas with respect to Long Covid:
1. Symptoms over the first 7+ months
2. Neurological symptoms and effects of cognitive dysfunction
3. Antibody testing
4. Mental health
We are translating this into 10+ languages in order to get the perspective of long haulers across the world.
Where your donation will go:
Right now we are all volunteers and are each working between 20-40 hours a week. Your donation will compensate us for our time, pay for our expenses (such as server and publication fees), and help us continue this important work and advocacy. It will let us devote more of our time to understanding Long Covid instead of picking up other work or worrying about our medical expenses.
Thank you for reading and for your support!
The Patient-Led Research Team
Gina Assaf, Hannah Davis, Athena Akrami, Hannah Wei, Lisa McCorkell, and so many Long Covid volunteers.
Patient Led Research Team website
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