Maureen would have been in her last year at the Georgetown University Law Center this fall, living in an apartment on H Street and preparing to graduate — in person or virtually — this spring. Instead, she deferred this past semester and has been at home in Upstate New York for months, passing time while she waits to start classes again in January.
It’s one of the ways her life has been sidetracked for the better part of a year. Maureen counts herself among the long-haulers, people who suffer from “Long COVID,” a lingering, rotating onslaught of symptoms that has affected patients of all ages and stumped doctors worldwide.
“I’ve been really healthy up until this point,” says Maureen, who preferred not to use her last name for privacy reasons. “I ran cross country in college. I was still trying to do five to seven miles of running a day. And this has just been absolutely debilitating.”
After experiencing all the symptoms associated with the disease caused by the novel coronavirus — headaches, fatigue, a sore throat, shortness of breath, body aches — Maureen still thought it couldn’t be COVID-19. She’d been social distancing, washing her hands, and wearing a mask. And besides, she was only 24 years old. “But I had the purple fingers and toes,” she says. “Once the COVID toes presented themselves, I did end up getting myself tested.”
But the test came back negative.
She and other long-haulers who spoke to DCist say one of the biggest challenges they’ve faced has been testing. They got sick in March or April, back when the District had testing shortages and there was widespread confusion about who had access to them. When these long-haulers were finally tested, they received false negative results — or, at least, it would appear that way since they still had symptoms.
Despite her negative results, doctors told Maureen: “You definitely have COVID — just ride it out for 30 days,” she says. “But I’m still riding it out.”
The specialists she saw, including a pulmonologist, cardiologist, rheumatologist, and hematologist, weren’t able to provide many answers about what her specific condition was and how to treat it. Maureen says one told her, somewhat dismissively, “You know, anxiety manifests itself in the body.”
Her condition has become the subject of peer-reviewed studies and massive online support groups — some have even begun lobbying Congress about Long COVID.
Maureen turned her attention to friends in New York and found informative articles online, including a June feature published in The Atlantic, which made the silent struggles of patients like Maureen more widely known. Facebook groups have popped up, including Survivor Corps and other forums where people share symptoms and inspirational music videos. “Long-haulers” and “Long COVID” have gradually become part of the new pandemic-times vernacular. (Patients and medical professionals push back on using terms like “post-COVID syndrome” or “chronic COVID-19,” arguing that Long COVID acknowledges the uncertainty of its cause and duration and that it captures a wide range of experiences.)
There have been multiple studies published since the Atlantic piece, including a report from the National Institute for Health Research that details what doctors suggest could be four different symptoms experienced at once.
And, over the past month, a group of physicians at GW Medical Faculty Associates launched the COVID-19 Recovery Clinic. Dr. Hana Akselrod, the clinic’s co-founder, says that in early summer, she started talking to other doctors in New York and on the West Coast who mentioned seeing patients with prolonged symptoms, which is odd for an acute respiratory viral infection.
“Around June or July, I started talking to a couple of my research colleagues about, ‘What are we going to do about this locally?'” says Akselrod, who, prior to the pandemic, primarily researched HIV. Since August, she’s seen about one or two Long Covid patients each week, often young and active before contracting the virus. “In public health terms, this is a huge, huge burden which affects people in their productive work and parenting years,” she says.
The new clinic — helmed by three doctors with expertise in infectious diseases, primary care, and medical research — aims to provide patients with proper evaluations and personalized rehabilitation programs; connects them with specialists based on their symptoms; and serves as a hub for researching the long-term effects and treatment of the disease. The clinic’s lab partners are investigating things like inflammatory changes, antibody response, and how the disease affects memory and brain function.
Of course, participation in research is always voluntary, Akselrod adds.
“So, people don’t have to participate in research to come to clinic, we’ll take care of everyone,” says Akselrod. “But we hope that people are interested [in participating] to help us understand this disease and advance our scientific knowledge of it … We think over time we will build up kind of a new bank of knowledge on this disease.”
While existing research explores a multitude of lingering symptoms ranging from fatigue to debilitating heart conditions, verified information is hard to come by, and some say it could take scientists years to know the full effects of Long COVID and who’s most at risk.
Some patients can’t wait that long. Signe Redfield, a 50-year-old robotics engineer from Southern Maryland, has taken a scientific approach to tracking her own illness. After she and her husband came down with COVID-19 in March and recovered, she “relapsed” 12 weeks later and entered a “sawtooth progression of getting better and then bad and better and then bad.” Using her smartwatch and phone apps, she’s tracked her symptoms and created extensive data logs that have helped her rule out things like chronic fatigue syndrome.
“It’s evil, it hates us,” she says somewhat facetiously of the disease that’s forced her to play a cruel game of figuring out what symptoms might come next.
Eventually, Redfield joined more than 18,000 people in the Body Politic COVID-19 support group on Slack. With more than 50 channels to choose from, she gravitated towards the #DataNerds channel where people post reliable studies. Members crowdsource info about potential solutions — participants vote in the Slack polls by reacting with a creative assortment of emojis. The group’s “culture of belief” has been a boon for her and others who “are all suffering and are all very much in this together,” she says.
“I have been told [by doctors], ‘I do not believe you have COVID,'” says Redfield, who spent months trying to get a doctor’s note to get more paid leave. An antibody test came back negative. (However, she notes, antibody tests aren’t considered conclusive among all health experts.)
Redfield essentially became her own doctor — finding recommendations for supplements online and testing them out to see which ones kept her symptoms at bay the longest — until a fellow Body Politic support group member recommended an infectious disease doctor at the University of Maryland, who’s provided more support.
Long-haulers like Maureen and Redfield are no longer in the shadows. While they’ve created online networks that aren’t bound by geography, there’s certainly been power in numbers in the Washington region.
A group of Marylanders, for example, presented a report to U.S. Senator Chris Van Hollen’s (D-Md.) office, calling for more funding to be directed toward the National Institutes of Health (NIH) for researching cases like theirs. The report also called for the creation of local clinics like the Mount Sinai Center for Post-COVID Care in New York (and the recently launched GW clinic), along with paid leave, disability, and full insurance coverage for patients who need it.
“All COVID-19 survivors need our support, but especially those who are dealing with the longer-term health effects of the disease,” Van Hollen said in an emailed statement. “That’s why I’ve been adamant about the need to invest in our research capabilities to truly understand the impact of COVID-19. The NIH is already undertaking some of this crucial research, and I will continue pushing for funding in this area. We must also work to help those facing long-term effects maintain their financial security during this difficult time. I’ve supported provisions to prevent Americans from being charged any out-of-pocket costs for COVID-19 treatment and to require hospitals and other providers to exercise emergency forbearance regarding medical debts.”
Even with the validation she gets from joining discussion groups and the growing attention toward long-haulers’ struggles, Maureen says she’s not sure of just about anything anymore. Heading into the winter, she plans to stay hunkered down.
“I’d like to think that I’m immune from this, but I went through such a terrible experience that I don’t want to gamble with getting this again,” she says. “I don’t like going into grocery stores. I don’t like being around groups of people anymore. I’m definitely the first to throw on a mask, even walking outside. It’s Amazon Prime Day. I’m sitting here looking at air purifiers. My sense of security is just totally shot.”
Akselrod, of GW’s COVID-19 Recovery Clinic, says it’s important for patients like Maureen to have hope.
“I know we may not have all the answers for a while. We may not be able to help solve every single consequence of the virus,” she says. “But I think it’s incredibly important not to give up around it and to recognize that it can be very damaging, but we believe there is a lot we can do to fight it, both in terms of prevention and in terms of treatment when people get sick.”
For Redfield, the engineer in Southern Maryland, the important task is tracking her symptoms and finding solutions — not just for herself, but for others going through the same painful and exhausting experience, she says. She even wrote to the NIH to advocate for the inclusion of long-haulers who’ve tested negative in COVID-19 studies, arguing that researchers are missing a key demographic without them.
“I actually got a call back from the NIH, wanting to know my story and wanting to keep me on the list for if I could help in any other way,” she says. “So, I know we are starting to have an impact.”