Guidelines Say Covid-19 Symptoms Last Two Weeks. Survivors Know Better.
People recovering from Covid-19 are searching for answers themselves
Hannah Davis first ran a fever on March 25. Two months later, the New York musical artist is still sick. In the sleepless weeks in between, her symptoms have spun wildly, like a rickety wheel of fortune. Some days, Davis has been leveled by gastrointestinal issues, rib aches, or kidney pain. Other days, it’s a stiff neck, headaches, or neurological issues that plague her. “I created a fire in my kitchen by accident,” she says. “I forgot my partner’s name at one point.”
Like many people with symptoms, Davis, 32, was never tested for Covid-19. Because doctors considered her symptoms mild, at least by coronavirus standards, she was told to self-isolate at home. But Davis is certain she was infected with the novel pathogen — and that it’s still disrupting her daily life. “It’s such a different disease than [I] have ever experienced before,” she says. “You know you have it. It feels like it’s searching through your body,” looking for vulnerable new tissues to penetrate.
Since it arrived in the United States in February, the coronavirus has infected at least 1.5 million Americans and killed more than 92,000. But for the people who recover, recuperation may not be all it’s cracked up to be. Many people with Covid-19 who have made it out of the hospital alive are permanently scarred by the experience — their muscles atrophied from weeks in bed and organs permanently damaged, often by their own immune system. People with Covid-19 who never left their homes are struggling, too. In the Body Politic Covid-19 Slack support group, which Davis joined in April, she’s encountered hundreds of other people describing stranger symptoms and longer recovery times than anyone anticipated.
“Most of us have start dates, so we can say we’re on day 20 or day 30,” Davis says. When she and I spoke by phone, she was on day 50 of experiencing symptoms.
There is little systematic scientific research on Covid-19 recoveries. That’s partly because recovery takes time — until recently, there haven’t been a lot of people to study. But it has more to do with the unique challenges posed by the pandemic: With many people enduring their illness in isolation, researchers have remained largely in the dark about the sheer technicolor variety of coronavirus symptoms — and the unresolved question of how long they last.
“It’s like we have this 5,000-piece puzzle, and we’re missing a whole lot of them,” says Gary LeRoy, MD, a doctor in Dayton, Ohio, and the president of the American Academy of Family Physicians.
While some scientists are beginning to turn their attention to the issue of rehabilitation, many patients have already begun the hard work of organizing, storytelling, and, in some cases, data collection. “Right now we’re just at the point of trying to ask the right questions,” says Diana Berrent, a photographer in Port Washington, New York. After testing positive in mid-March, she founded the Covid-19 Facebook group Survivor Corps, which is now more than 47,000 members strong.
In the absence of other evidence, the Body Politic support group formed its own “patient-led research team,” which recently analyzed survey responses from 640 self-identified Covid-19 sufferers. They say that nearly 91% of the respondents had not recovered when they took the survey. Among the 60 respondents who had, their symptoms had lasted, on average, 27 days. The respondents who were still sick had been experiencing symptoms for an average of 40 days, with a large proportion experiencing symptoms for five to seven weeks. While it is important to keep the origins of this report in perspective — it has not been peer-reviewed, it is heavily skewed toward white cisgender female participants, and it’s possible that people with longer recovery times are the ones who join support groups in the first place — it offered a comprehensive list of reported side effects and new insight into how patients were faring. When it comes to tracking the progress of this disease, “our support group has been consistently a week ahead of the doctors,” Davis says.
“Most of us have start dates, so we can say we’re on day 20 or day 30,” Davis says. When she and I spoke by phone, she was on day 50 of experiencing symptoms.
In February, the World Health Organization published a review of preliminary Chinese recovery data. The report concluded that “the median time from onset to clinical recovery for mild cases is approximately two weeks and is three to six weeks for patients with severe or critical disease.” But few new scientific papers have emerged in the months since, and patient anecdotes have begun to challenge this notion of a two-week recovery.
“This is a novel disease. And an outrageous one,” Paul Garner, a professor at the Liverpool School of Tropical Medicine, told The Guardian after his own seven-week recovery. “The textbooks haven’t been written.” Another medical expert, virologist Peter Piot, the director of the London School of Hygiene & Tropical Medicine, also said it took about seven weeks before he started feeling like himself again.
At first, the two-week timeline that was being touted was a comfort to Davis, the musical artist who first showed symptoms in late March. But when the deadline passed and her sickness still hadn’t abated, she started to worry. “[I] realized this wasn’t going to be a linear progression to get better,” she says. In the language of the Body Politic group, Davis has experienced “relapses” — feeling better before symptoms suddenly rebound.
Studies on convalescence have been waylaid by other priorities, according to researchers. “It’s the second wave of research,” says Carmine Pariante, MD, PhD, a professor of biological psychiatry at King’s College London. “The first one was to save people from dying.” But scientists have also struggled to get access to reliable data, with so many people with Covid-19 recovering at home.
As communities around the world have worked together to flatten the curve, researchers have caught a glimpse of what’s on the horizon. In the United States, clinicians are gaining new perspectives on patient experiences through telehealth appointments. Doctors in Italy, whose experiences have often foreshadowed the pandemic experience in America, have begun to share their observations of agonizingly long recoveries. And several academic institutions have begun survey studies to backfill missing data.
Recently, King’s College London and Massachusetts General Hospital partnered with the nutritional startup Zoe on a Covid Symptom Study app. More than three million respondents are contributing daily, geo-located updates on their health, including some of the most recent additions to the growing list of Covid-19 side effects, like loss of smell or taste and foot sores. Their data has already supplied intriguing evidence for a genetic component to people’s coronavirus symptoms. It also suggests that at least 200,000 of their study participants have had symptoms for six weeks. But the bulk of their work has yet to bear fruit.
“Good scientific investigation takes time,” LeRoy says. “It’s a slow process if you’re going to get it right.”
Going forward, both activists and scientists say the best research will likely continue to come from collaborations between researchers and patients. They hope to characterize the full range of symptoms, chart their ebb and flow, and determine what makes some people vulnerable to prolonged symptoms while others snap back or never show symptoms at all. “By creating this community and sharing our stories, it helps the scientific community know what hypotheses they need to study,” Berrent says. To further this work, Survivor Corps wants to work directly with a research institution and a biotech company on a long-term study of Covid-19 patients’ outcomes. “We are living in a new era of scientific collaboration,” she adds. “I’m very heartened.”
Since it emerged in late 2019, the narrative around the coronavirus has evolved rapidly. “Originally, it was just, ‘oh, it affects old people’ — wrong. ‘It doesn’t affect young people’ — wrong. ‘It doesn’t affect kids’ — wrong,” LeRoy says. Now the story has changed once again. “Even though you think you’re over it, perhaps you’re not.”
This uncertainty has stoked fear and anxiety among the general public, but the mental health repercussions of the pandemic are especially acute for survivors. A recent analysis in The Lancet of research on the psychological impact of the virus found elevated rates of depression, anxiety, and post-traumatic stress among people with severe infections. Other symptoms, like insomnia and impaired memory, were also observed.
“The things that were sort of being dismissed out of hand a month ago” are now being validated.
“We are in a liminal state,” Berrent, the founder of Survivor Corps, says. In addition to wondering when (or if) her energy levels will rebound or her vision will return to normal, she’s also worried about the implications for her children, who were also infected. “It’s so unnerving to not know what the long-term consequences are,” she says.
Community has been a great source of support for people recovering from the coronavirus. “It’s been one of the most meaningful experiences of my life,” Davis says of her affiliation with Body Politic. But people recovering from the disease say it’s important that those outside the patient community, such as health care providers and the general public, learn about their experiences. Some people in Body Politic and Survivor Corps have reported feeling dismissed or gaslit by their doctors for unusual symptoms. They’ve also received skepticism from loved ones, who have dismissed their pain as attention-seeking or the result of an overactive imagination.
“The things that were sort of being dismissed out of hand a month ago” are now being validated, Berrent says. To pave the path for future patients, members of both groups are sharing their stories any way they can. They’re also sharing their successes: “We’re starting to get stories in the ‘victory’ [Slack] channel of people who are in their ninth week and are feeling recovered,” Davis said of Body Politic.
In the coming months, our understanding of Covid-19 will continue to change. “It’s a natural process,” Pariante says. “If there’s no debate, there’s no science.” But to resolve these conundrums and help patients, we won’t just need more data — we’ll need more empathy.
