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“The work of the Patient-Led Research group—including a rapid survey and analysis of 640 patients and a detailed paper tracking symptoms in thousands of patients who have been sick for over 28 days—is helping to drive a larger reckoning about how science values and uses knowledge produced by outsiders.”
“Francis Collins, the director of the National Institutes of Health, the biggest funder of biomedical research in the U.S., highlighted Covid citizen science in his blog on the NIH site earlier this month, citing the work of the Patient-Led Research group for providing “a first-draft description” of aspects of the disease.”Wall Street Journal
The Atlantic, “COVID-19 Can Last for Several Months”
MIT Tech Review, “Covid-19 “long haulers” are organizing online to study themselves”
NIH Director’s Blog, “Citizen Scientists Take on the Challenge of Long-Haul COVID-19”
NPR Short Wave, “Coronavirus ‘Long-Haulers’ Have Been Sick For Months. Why?”
Wall Street Journal, “COVID-19 Patients Are Doing Their Own Research.“
The Atlantic, “Long-Haulers are Redefining COVID-19”
“…that research project that they did is such an important part of the picture. It’s the patients themselves taking their own care and their own health into their own hands and presenting really vital information that people need to be aware of.”NPR
Australia Broadcasting Corporation, “Meet the coronavirus patients stuck in medical purgatory who have teamed up to find their own answers”
To date, much of what is known about what has been called “long-Covid” comes from research led by patients themselves, often called “long-haulers.” In May, a research team from Body Politic, an online patient support community, released the results of a survey of 640 long-haulers, documenting a surprising array of symptoms.STAT
“In the Body Politic survey, respondents with negative test results were tested a week after those with positive ones, on average, but the groups did not differ in their incidence of 60 different symptoms over time. Those matching patterns strongly suggest that those with negative tests are indeed dealing with the same disease.”NPR
The Guardian, “Brain fog, phantom smells, and tinnitus”
NPR On Point, “Lingering Symptoms, Long-Term Damage”
A survey from Patient Led Research provides one of the few pictures of long-term Covid-19 patients that we have.WIRED
The Scientist, “Could COVID-19 Trigger Chronic Disease in Some People?”
This group of women […] have taken their health into their own hands, pioneering patient-led research into the virus.Australia Broadcasting Company
Culturally Relevant Podcast, “Living with Covid-19 for over 100 Days”
Wall Street Journal, “Three Months In, These Patients Are Still Ravaged by Covid’s Fallout”
Citations and Medical References
There needs to be some bidirectionality…to avoid institutional “top down” blind spots about the condition. We have been encouraged to find really interesting patient led research about long covid and antibody testing e.g. Slack Body Politic group, and all of this patient led data could be the foundation for supporting the rehabilitation of those affected by prolonged symptoms of covid-19.British Medical Journal
Other Mentions & Discussions
Gay USA Podcast, Week of 5-13-20
The Guardian, “Lingering and painful: the long and unclear road to coronavirus recovery”
ME Action, “Citizen science highlights non-recovery in COVID-19 patients”
Princeton Longevity Center, “Research Updates”
British Medical Journal, “Covid-19: Prolonged and relapsing course of illness has implications for returning workers” . June 23, 2020.
Fatigue: Biomedicine, Health & Behavior. Post-viral fatigue and COVID-19: lessons from past epidemics. June 25, 2020.
British Medical Journal, “Patients’ experiences of “longcovid” are missing from the NHS narrative”. July 10, 2020.
British Medical Journal, “Management of post-acute covid-19 in primary care.” August 11, 2020.
British Medical Journal, “We have heard your message about long covid and we will act, says WHO.” Sept 3, 2020.
JAMA, “As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts.” Sept 23, 2020.
British Medical Journal, “Managing long covid: don’t overlook olfactory dysfunction.” Sept 25, 2020.
The Lancet, “Taking pandemic sequelae seriously: from the Russian influenza to COVID-19 long-haulers.” Oct 12, 2020.
British Medical Journal, “Neuropsychiatric complications of covid-19.” Oct 13, 2020.