PARIS, FRANCE -- Snatching moments of clarity through the brain fog that was among the lingering symptoms of her coronavirus infection, Hannah Davis joined a team of similarly ill researchers and launched a study of what is now called "long COVID".
But she said the online community and her work with Patient-led Research for COVID-19 -- led by a team of five people who have never met in person -- has been "awe-inspiring". Soon thousands of people were turning to social media, desperate to understand why they were not getting better. Within days, Davis joined several other members with research backgrounds to launch a patient survey, hoping data would help sketch out a clearer picture of coronavirus recoveries.
In the end they made a film montage of "long-hauler" stories called "Message in a Bottle" and shared it online, hoping to raise the profile of long Covid. She spent several months incapacitated and struggling to get help from health authorities, who told her she was not in a high risk group, before being repatriated to France in June in a wheelchair.
COVID-19 is a "taboo", he said, and those with long-term symptoms can face disbelief from doctors, employers and even family.A key challenge is a lack of information about the symptoms and scale of long COVID-19.
Filed under a Crisis is a terrible thing to waste in the Twilight Zone
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