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There were weeks when Hannah Davis couldn’t remember how to send a text message. On top of the extreme fatigue, racing heart rate, and difficulty breathing she experienced daily, the most terrifying part of being sick with COVID-19 for the last 21 weeks, Davis said, has also been one of the hardest to explain: losing her mind.
“I feel like I have a brain injury. I have a hard time remembering who I was,” she said. “It was hard to remember I had to feed myself a couple times a day.”
Davis, 32, is a programmer who spent her days pre-pandemic working on machine learning and artificial intelligence, often presenting to big audiences, including at the Library of Congress. That all came crashing to a halt in March, when she got sick. She had to move back in with her mom and, for 150 days, has been unable to function normally. Doctors, even sympathetic ones, had no answers. Most questioned whether her symptoms, particularly the neurological ones, were linked to COVID at all.
But Davis soon realized that she was not alone. She’s among the thousands of people across the globe — many of whom were young, active, and healthy — who have been debilitated by ongoing, unexplainable symptoms. These patients, also known as long-haulers, are crushing the popular idea that COVID is only serious for a small percentage of vulnerable people.
And after months of self-organizing on social media to document their symptoms and collect data, Davis is now part of a group that’s pushing for the medical establishment to take them seriously too.
On Friday, led by LongCovidSOS, a patient-led advocacy group in the UK, Davis and about 60 other long-haulers had a closed, invite-only meeting with top officials from the World Health Organization in the biggest recognition yet that the medical world is starting to pay attention and figure out solutions.
The growing group of long-haulers hopes that this small but significant progress — eight months into the pandemic, with almost 800,000 deaths from COVID-19 worldwide so far — will draw attention to the more than tens of millions who have survived, blurring what we understand as the difference between illness and recovery.
The long-haulers called in to the WHO meeting from places around the world — the US, the UK, India, Italy, Spain, France, Finland, Senegal, and South Africa — but they all shared largely the same story: I was young and active before this, and now I cannot seem to get better. I haven’t been able to get my doctor to believe me because I do not have a positive test result, and I need a lot of care that does not exist where I live.
Leaders from the WHO, including the director-general, said they were “very aware” of and now doing research into “long COVID,” people who attended the meeting told BuzzFeed News. But even top medical specialists acknowledged they didn’t know that so many of these symptoms were happening in younger people whose cases had been initially categorized as “mild” — meaning they were sick, but not sick enough to be hospitalized. While the meeting was a positive, validating step for Davis and the other long-haulers, conversations around testing, antibodies, and the need for rehabilitative care made it clear that there is far more work that needs to be done.
“This is not just a respiratory illness. This is a systemic illness that makes you lose connection with the world,” Davis told BuzzFeed News from her mom’s Rhode Island home, where she is now living. “And the most shocking thing to me is how long it has taken for doctors and the general public to realize this basic fact.”
David Putrino, the director of rehabilitation innovation at New York City’s Mount Sinai hospital, has been studying and caring for long-haulers at one of the nation’s only post-COVID clinics since May. He said that as important as these grassroots advocacy efforts are, they are far from enough. The CDC and the WHO need to be throwing their resources behind them, Putrino said, or else millions of people are going to be “left out in the cold.”
“It's not that we don't have capacity — we do have capacity. What we need to do is rapidly mobilize and educate people that long COVID is a real thing, and it’s going to be around for a while,” he said. “There's a lot of hurt and we are doing what we can to help, but we need a lot of people to pick up the torch and run with us.”
Davis had no idea what was happening to her back in March. She had to stop showering because there were too many steps — it was exhausting. She would stare at her fingers trying to parse a text message, wondering what they were doing. It sometimes felt, she said, like someone had suddenly turned a windshield wiper on over her brain — everything would go blank.
For 24 days, she felt completely alone. Then, she came across an op-ed by Fiona Lowenstein, another woman in New York who had started a support group to talk about recovery. The group she launched, called Body Politic, now has 7,500 members on Slack. Davis also joined several Facebook groups, with more than 17,500 long-haulers in one Facebook group and 5,000 in another.
Scrolling through Body Politic’s nearly 50 Slack channels, Davis was stunned to keep reading accounts identical to hers, but from yoga instructors in Chicago, college students in Kentucky, and a married couple from Utah in their forties.
BuzzFeed News spoke with more than 100 of these long-haulers who described a set of similar symptoms: Their hearts would race and palpate. They got winded walking up stairs and were unable to stand for long periods of time. Though fatigue was common, many people also said they couldn’t sleep. They had relentless fevers, violent diarrhea, and throbbing headaches. The tips of their fingers and toes often burned intensely, like they got plugged into an electrical socket. Some women described having extremely heavy periods — or no periods at all — and having their hair fall out in clumps. And, like Davis, most of them were trying to figure out what was going on with their bodies while navigating what they call a “brain fog,” a mix between short-term memory loss and an inability to focus.
Most notably, the vast majority of long-haulers described visiting doctors with no answers to give — or worse, who suggested that their symptoms could possibly be linked to anxiety or depression instead of COVID.
But Davis and several other Body Politic members with backgrounds in data, science, and medicine saw a way to counter that doubt: harnessing the anecdotes in the group to gather data and force change. They formed their own research group and began organizing patients’ daily symptoms. It was a “coping strategy,” she said, to sift through information and search for answers.
On May 11, they published the first extensive report detailing the volatile and often unpredictable recovery process, based on the experiences of 640 people. The findings were trailblazing and “a huge shock to the narrative of what COVID actually was,” Davis said, and caught the attention of reporters and prestigious medical journals. It also made clear that testing systems were failing: Only a quarter of the respondents tested positive — nearly half were never able to get a test — but they still all reported experiencing about 60 of the same persistent symptoms. They are aiming to publish another report soon highlighting what long-haulers’ symptoms look like after six months.
“The group is like an open book of patient-written history of the virus,” said Lowenstein, Body Politic’s founder. She calls the group “a headquarters for patient advocacy efforts.”
“You can see how the symptoms have morphed over time and how diverse the patient experience is,” Lowenstein said, describing how people have been joining the group in geographic waves. “In the beginning of the summer, a bunch of people from Brazil were messaging me. Then I started hearing from more people in India and Mexico.”
A small handful of scientists have started collecting data on the longer-term effects of COVID too. A study out of Germany found that 78 out of 100 patients — most of whom recovered at home — had heart complications two months later. An Italian study found that 87% of hospitalized patients still had a variety of symptoms after two months.
Putrino has been studying and treating the long COVID cases since May. He’s been in contact with about 90,000 people in almost 100 countries who are all reporting nearly the same spate of serious, post-viral symptoms that knock their autonomic nervous systems out of whack. Their average age is about 38, he said, and they’re mainly women. Before COVID, many of them were vibrant, active, “and breezing through life,” he said. Now, they can’t work and often need help with basic tasks, like feeding themselves.
“It feels like your body is rebelling against you and, to add insult to injury, it’s an unpredictable war,” he said. “This should be enough to make everyone pause and think, Yeah, I am young and healthy, but can I afford to be out of action for six months? Because that is what we are seeing.”
Months into their advocacy efforts, the murky long-term effects of COVID are getting the attention of the biggest health agencies in the world. In July, the CDC acknowledged that a significant chunk of COVID patients — 35% — do not recover after three weeks, even if their cases were considered too mild for hospitalization. Last week, the patient-led research team met with the health agency, which hopes to start its own investigation, in a meeting Davis called “incredibly validating.”
Friday’s meeting with the WHO was Davis and the other long-hauler advocates’ biggest move yet.
For one and a half hours, the long-haulers shared their testimonies with top officials, including Director-General Tedros Adhanom Ghebreyesus and the WHO’s technical lead for coronavirus response, Maria Van Kerkhove, who asked questions. The WHO officials agreed to have periodic meetings with the representatives in the future and are putting together a pamphlet on what is known about the long-term effects of COVID-19.
But, according to Lowenstein, the meeting also made clear there are still fundamental misunderstandings about what COVID looks like. For example, she said, existing WHO guidelines with health and rehab recommendations for patients are still only targeted at people who’ve been hospitalized.
“There still is not enough understanding that the word ‘mild’ in and of itself is extremely misleading,” she said. “There was no real common knowledge that a ‘mild’ case could leave you with disabilities and long-term chronic issues.”
Like many health organizations and doctors across the US, WHO officials also did not understand that the bulk of long-haulers were not testing for antibodies, did not have positive test results for the virus, or even have access to tests. Body Politic’s first report made this problem clear — many long-haulers were unable to get tested in the early days of the pandemic or live in countries with scarce testing supplies. Others got tested later when they were still feeling ill, only to come back with negative results. Those results matter: Many long-haulers described their inability to get treatment and the doubt they felt — from doctors, family, and even themselves — without a positive test in hand.
“False testing is rampant and widespread,” Lowenstein said. “COVID-19 patients are not testing positive for antibodies, and the WHO didn’t seem to understand that was happening in droves. It didn’t seem to be doing a ton of work in this area.”
Still, they left the meeting feeling hopeful and with promises that this will be part of an “ongoing and robust conversation that will lead to improved communication and guidelines from the WHO.”
To Putrino and other experts who’ve been working with long-haulers, what’s really needed are effective rehab services to help recondition and train their systems. According to Davis and dozens of others still feeling symptoms, there are only a few specialists across the US who are really listening to and working with them. Desperate for help and doctors who believe them, long-haulers have been circulating their names so avidly in their online support groups that the first available appointment is often a year away. Davis had been calling a neurologist in Chicago, who was booked out until September 2021, multiple times a day. Last week, she got lucky and nabbed a cancellation for March.
“If medical centers across the country start creating post-COVID centers, we won’t have a generation of long-term, chronically ill people. But if we don’t…” Putrino trailed off.
As terrifying as many long-haulers’ journeys have been, some of them are starting to get better. Lowenstein has been largely symptom-free since June. In between messages about strange seizures, bruises, and light sensitivity on their forums, there are success stories and small victories: being able to kick a soccer ball with their kids with no relapse or pain; carrying groceries up the stairs on their own; sleeping through the night for the first time in months; dipping their toes in a lake and marveling at feeling nothing but cool water.
Davis is getting a little better too. She doesn’t need to take as many naps and conversations aren’t as hard for her to follow. She’s slowly choosing how her life will look. She’s considering moving to a city with a post-COVID clinic and using her past skill set, when she can, to research and advocate for long-haulers full-time. She still feels far away from herself, but has never been more aware of her body and what it can do.
“I know that my sense of self is still intact,” she said. “And I trust myself to take care of myself.” ●