We have been lucky to be featured in publications like The Atlantic, NPR, and CNN and cited in medical journals like Fatigue, JAMA, and the British Medical Journal. Please reach out to if you would like to write about our research.

Select Interviews

Our works has been featured in

“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”

NIH Director’s Blog, “Trying to Make Sense of Long COVID Syndrome”

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.”


Live Science, “‘We just had no answers’: COVID-19 ‘long-haulers’ still learning why they’re sick.”

Science Magazine, “From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists”

Australia Broadcasting Corporation, “Meet the coronavirus patients stuck in medical purgatory who have teamed up to find their own answers”

STAT, “Persistent Symptoms After COVID-19 Are Hard to Study”

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.


The Guardian, “Think a ‘mild’ case of Covid-19 doesn’t sound so bad? Think again”

CNN, “Covid-19 survivors have symptoms for months”

Elemental, “Guidelines Say Covid-19 Symptoms Last Two Weeks. Survivors Know Better.”

“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.”


WIRED, “Coronavirus Long Haulers Negative Tests”

The Guardian, “Brain fog, phantom smells, and tinnitus”

STAT, “My Covid-19 symptoms have lasted more than 100 days, and I’m not alone. Will they ever end?”

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.


CBS News, “First Report Released on COVID-19 Long Haulers”

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

KTVU, “COVID-19 support group brings attention to patients struggling relapses and months-long symptoms”

CBC, “Strange symptoms, flare-ups, weeks-long illnesses for some COVID-19 survivors”

Culturally Relevant Podcast, “Living with Covid-19 for over 100 Days”

Toronto Star, “The mystery of COVID-19 long haulers’ months-long symptoms”

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”

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