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Catching moments of clarity through the brain fog that was among the lingering symptoms of her coronavirus infection, Hannah Davis joined a team of equally ill researchers and launched a study on what is now called “long Covid.”
The survey was initially “for ourselves, to figure out what was happening to our body,” Davis said. But with so little data available, he soon informed global policy makers.
Davis is part of an international movement of patient-led people who, when affected by debilitating and unexplained symptoms, developed social media, research and support networks from their sick beds.
The 32-year-old compares her neurological symptoms to a “brain injury” which meant she couldn’t drive for months and was barely able to watch a screen.
But he said the online community and his work with patient-led research for Covid-19 – led by a team of five who have never met in person – was “impressive”.
“I really don’t think I’ve ever done a job that’s been as significant,” said Davis, a machine learning and AI specialist whose team is working on a new study supported by University College London.
We now know that the new coronavirus, which has killed at least 1.4 million people around the world, can leave persistent symptoms even in otherwise healthy young people.
“For a significant number of people, this virus poses a series of serious long-term effects,” World Health Organization director-general Tedros Adhanom Ghebreyesus said in October.
He listed fatigue and neurological symptoms, as well as inflammation and injury of major organs, including the lungs and heart.
But in the early days of the pandemic, most people believed that the infection would result in hospitalization or a “mild” respiratory disease that would pass in about two weeks.
Soon thousands of people took to social media, desperate for why they weren’t getting better.
Many share the date of the first symptoms – the first day – to mark the beginning of a journey with an indeterminate end.
For Davis, it was March 25, when he struggled to decipher a text message from friends and later found out he had a fever.
In “a hotspot in a hotspot” in Brooklyn, New York, he quickly realized it was Covid-19 and expected the disease to pass quickly.
I did not do it.
In April, as her neurological symptoms worsened, Davis found a Slack support group run by the queer feminist welfare collective Body Politic that was attracting members from around the world.
Within days, Davis joined several other members with research backgrounds to launch a patient survey, hoping the data would help paint a clearer picture of coronavirus recoveries.
The study involved 640 people – mostly women in the United States who responded more readily – and was completed at the speed of light.
He reported symptoms such as fatigue and brain fog that were not yet widely recognized.
In London, Ondine Sherwood was suffering from fatigue, post-exertional malaise and gastrointestinal problems when she discovered the Body Politic group and was “amazed” to see so many people with similar or worse symptoms.
He was part of a group of British members who decided to form their own organization, Long Covid SOS, to send a message to the government.
But how?
“We thought we could march to parliament, which of course would have been impossible because most of us wouldn’t have the strength or ability to march, so we thought maybe we’d go in wheelchairs, but it was closed,” he said. said Sherwood, a systems developer.
Eventually they made a film montage of “long-range” stories called “Message in a Bottle” and shared it online, hoping to raise Covid’s profile for a long time.
It worked: The film attracted WHO attention, and the group was tasked with gathering patients for an August meeting that saw Davis introduce the Body Politic study and included long-range children’s stories and testimonials from doctors with persistent symptoms.
The WHO has since said more research is needed into why symptoms persist and has called on governments to recognize the condition.
But many patients struggle to be believed, especially without a positive test.
Pauline Oustric represented patient groups in France, Spain, Italy and Finland at the WHO meeting, calling for recognition, research, rehabilitation and better communication.
The 27-year-old French citizen fell ill in March while working on her PhD at the University of Leeds in Great Britain.
She spent several months incapacitated and struggling to get help from health authorities, who told her she was not part of a high-risk group, before being repatriated to France in June in a wheelchair.
There he worked with other patients to create a longstanding Covid association, with the French hashtag apresJ20 – after day 20.
In Italy, where Covid has long not been officially recognized, her doctor told 59-year-old Morena Colomb that she should seek psychiatric help for her ongoing symptoms.
Colomb, who lobbied the government for recognition, set up the Facebook support group “We Who Defeated Covid” which now has 10,000 members.
“I don’t feel alone anymore, I don’t feel crazy,” she told AFP.
Juno Simorangkir, 36, created the group “Covid Survivor Indonesia” after finding support on the Body Politic network for his symptoms including heart palpitations, “extreme fatigue” and tinnitus.
Covid-19 is “taboo,” he said, and those with long-term symptoms can face disbelief from doctors, employers, and even family members.
A key challenge is the lack of information on the symptoms and extent of long Covid.
Research published in July by the U.S. Centers for Disease Control and Prevention found that 35 percent of symptomatic adults had not returned to normal two to three weeks after testing positive.
A study from the Desert Research Institute in Nevada, which has not yet been peer reviewed, found that about a quarter of confirmed cases still had at least one symptom after 90 days.
Davis and her patient-led research colleagues have been praised as “citizen scientists” by the head of the US National Institutes of Health.
Their ongoing patient survey involves nearly 5,000 participants in 72 countries.
Davis said common persistent effects include breathing problems, memory loss, difficulty concentrating and with tasks “like being able to drive, or watch your children, or work.”
Many also suffer from post-exertional malaise, making comparisons with myalgic encephalomyelitis and chronic fatigue syndrome, although he warns that more research is needed.
Nisreen Alwan, an associate professor of public health at the British University of Southampton and a long-range operator, has campaigned for governments to count more than the death toll from the virus.
But he said defining recovery could be tricky, with some patients avoiding activities that trigger symptoms.
“You’re adjusting your life so you can function,” she told AFP, adding that she now limits exercise and has even changed her sitting position.
A long-standing Covid specialist clinic in Paris diagnosed Oustric with dysautonomia, an autonomic nervous system disorder.
She has returned to live with her parents and can only work on her thesis in 30 minutes.
“From a research point of view I have had a big impact and from a life point of view, I can’t do any physical activity, I can’t lift things, I have pain every day, I take a lot of medicines. My life is a bit of a casino, “he told AFP.
“Hopefully I will return to my energetic self.”
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