Nov 11, 2020
How Covid-19 Long Haulers Created a Movement
Patient organization has a long history as one of the most effective tactics for health condition recognition and action in the United States
Hannah Davis’ “day one” is March 25. It’s the day she first started experiencing symptoms of Covid-19. That evening, she tried to respond to a text message from a good friend and discovered she was struggling to read it. About an hour later, she took her temperature and had a fever. She’s now reached nearly 200 days of symptoms and is considered a Covid-19 long hauler or someone with “long Covid,” as she and many others call it.
“Day ones” have gained significance within the Covid-19 community, and people in the long Covid-19 support group that Davis is a part of like to share them. “When you meet another person who has your day one, you feel this camaraderie with them because you know they’ve been on the journey basically the same way you have,” she says.
There are tens of thousands of people around the world who consider themselves Covid-19 long haulers. These are men and women whose symptoms of the illness have lasted months past when they were expected to remedy. The symptoms are similar in many ways to the kinds of full-body symptoms that people with shorter periods of the disease are experiencing, too — often debilitating sickness that affects the body from head to toe. For Davis, a Brooklyn-based artist and researcher, the symptoms have been mostly neurological. She says she’s dealt with memory issues and hand tremors, both of which have greatly improved but still affect her daily life. For Lauren Nichols, another person with long Covid-19, the symptoms range greatly, but some of the most severe are gastrointestinal, including daily bouts of nausea and diarrhea (in addition to daily fatigue, memory loss, and headaches).
“We’re able to do what we’re doing right now — meeting with the CDC and the NIH and the World Health Organization — because AIDS activists did it first.”
A growing acknowledgment that SARS-CoV-2 can cause symptoms that linger for weeks or months can be credited in large part to the awareness work of Covid-19 long haulers themselves. Exactly how long the effects can last is unknown, but many people in Covid-19 support groups like Body Politic — a queer, feminist wellness collective turned Covid-19 hub that both Davis and Nichols joined in April — have dealt with symptoms for several months. Body Politic now has over 18,000 active members in over 30 different countries. Other similar support groups on Facebook have tens of thousands of members.
Yet getting care for these symptoms or even recognition that they stem from Covid-19 can be challenging. At the beginning of the pandemic, it was difficult to get tested for Covid-19. Testing capacity was low and often reserved for people being admitted to hospitals for care. This means there are people who had symptoms consistent with Covid-19 infection in March who weren’t able to get tested until a month later or longer, at which point many tested negative. Without a confirmed diagnosis of Covid-19, people with longer-term symptoms say they experience doubt from medical professionals, friends, and family that their health issues are related to the virus. There are people in the group who have also tested negative for antibodies, which creates more complications and confusion.
Members of Covid-19 support groups like Body Politic have banded together and organized research projects and awareness campaigns both to promote recognition of the longer-lasting symptoms of the disease and to advocate for care without a positive test. Signs suggest public health leaders are at least listening. In recent months Covid-19 long haulers have landed meetings with National Institutes of Health (NIH) leaders Drs. Anthony Fauci and Francis Collins as well as Tedros Adhanom Ghebreyesus, PhD, the head of the World Health Organization (WHO).
The success of these support groups in attracting attention from the medical field, the media, and major public and global health groups is both impressive and familiar. Bottom-up organization through patient-led health movements has long been one of the most effective tactics for health condition recognition and action in the United States.
“I don’t think we realized that there would need to be a patient advocacy movement,” says Fiona Lowenstein, the founder of Body Politic who was diagnosed with Covid-19 in March and had symptoms that lasted until June. “Which was probably a little naive because [as] we’ve seen in past disease outbreaks and pandemics, that sort of thing is often necessary.”
At nearly every point of major economic and social tumult, there has been a group of suffering people organizing for recognition. The Industrial Revolution was a time of great labor unrest, including strikes and rioting over occupational health concerns over the risks of burning in mine shafts and being smashed between train cars. Labor unions and strikes became the only way forward to demand health protections, and in 1877, workers at the Pennsylvania Railroad burned the Pittsburgh facilities to the ground. Similar protests advocating for health-related protections have been held over the following century and a half for disability rights, mental health rights, and national health care. The women’s health movement advocated successfully for improved treatment for breast cancer and other illnesses and changed medical research to be more inclusive to women. The HIV/AIDS movement of the 1980s is credited with expanding funding and evolving clinical trial design for AIDS research and drug development as well as fighting for the destigmatization of people with the disease.
Academics at Northeastern University’s Social Science Environmental Health Research Institute refer to this kind of health-related social activism as “embodied health movements,” which is a type of movement that focuses on challenging medical policy and politics, belief systems, research, and medical practice. Many embodied health movements focus on what initially may be considered a “contested illness” or conditions whose causes are either unexplained by current medical knowledge or are in dispute. This was the case early on with HIV/AIDS and has been the case with other diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Gulf War syndrome, and now long Covid-19.
In most embodied health movements, the bodily experience of the disease is a unifying and mobilizing force, so write the authors of Contested Illnesses: Citizens, Science, and Health Social Movements. “The progression of identity from aggrieved sufferer to participant in collective action results from the disease process happening inside the individual’s body and the ways that others perceive and react to disease,” they argue.
People who engage in health social movements often share a unique experience that not only affects their disease but other parts of their lives, like their personal relationships and mental states. According to the Contested Illnesses authors, this creates a shared lived perspective among the group that’s unavailable to others. It’s a unique aspect of health movements that can feel especially binding and motivating to the people involved. “If I hadn’t found the support group, I didn’t know if I would still be in this world,” says Nichols. “I was so depressed and lonely. My husband was fantastic, but the only people who can understand are other people going through it.”
What can set embodied health movements apart from other social activism is that, in many cases, the groups themselves engage in science directly. This can lead to citizen-science alliances — when activists collaborate closely with scientists and health professionals to pursue data, treatments, prevention strategies, and funding. People affected by disease bring insights from their personal experience, and scientists can contribute technical skills and knowledge, write the Contested Illnesses authors. “These alliances contribute to new knowledge, and they also challenge — and sometimes change — scientific norms by valuing the experience and knowledge of illness suffers.”
Historically speaking, when little was understood about HIV/AIDS, activists repeatedly sought a place at the table so that their personal illness experiences could help shape study design. Many people with the illness struggled to get treatment outside of clinical trials. The gold standard of treatment — the randomized controlled trial — meant that people who enrolled needed to meet very specific criteria and had a 50% chance of being given a placebo rather than the drug under investigation. Activists read up on the scientific practice and research mythologies and suggested the abandonment of the placebo trial for AIDS research in favor of trials that could fast-track treatments that were showing progress. This included using historical control groups — which meant using results from a previous study as a control for a new study — or using statistical analysis to compare two drugs without the need for a placebo, as The Guardian reports. Many of these suggested measures were adopted in medical research more broadly, allowing for more speedy findings.
Lowenstein, who was a history major in college with a long-time interest in activist movements, says Body Politic’s Covid-19 work takes inspiration from the AIDS activists of the 1980s. “AIDS activism was the first thing that came to mind for me in the early stages of our movement,” she says. “It offered a template for me in terms of how to communicate with health agencies.”
Lowenstein says it was clear to her that health agencies are open to listening to patients and that this likely came from the work of AIDS activists. “We’re able to do what we’re doing right now — meeting with the CDC and the NIH and the World Health Organization — because AIDS activists did it first,” she says. “Even the language that these agencies use when interacting with us is language that clearly comes out of that era. Saying things like, ‘we understand that patients are experts’ and ‘we understand that you have a wealth of information that we need to listen to.’”
In May 2020, the research arm of Body Politic, called Patient-Led Research for Covid-19, published survey responses from 640 people who said they had been suffering with symptoms of Covid-19 for over 30 days. They reported that nearly 91% of the respondents had not yet recovered when they took the survey and that among the 60 respondents who had, their symptoms had lasted an average of 27 days. The people who were still sick at the time of the survey said they had been experiencing symptoms for an average of 40 days, and there was a large proportion experiencing symptoms for five to seven weeks. The survey revealed 62 commonly shared symptoms that included more widely recognized Covid-19 symptoms such as fever, cough, and shortness of breath as well as symptoms that were less recognized at the time as related to Covid-19, such as fatigue, brain fog, trouble concentrating, chills and sweats, trouble sleeping, and a loss of appetite.
The initial paper was not peer-reviewed and was originally published in a Google doc. It skewed heavily female and white. It would not be considered an “evidence-based medicine” approach to effectively assessing data. But Davis says the intent of the survey wasn’t to progress science but to provide insights into what people with long Covid-19 could expect. “It was not designed for the public,” says Davis. “It was designed for people with long Covid to just give ourselves answers.”
Even so, the findings gained widespread traction, and soon journalists and medical professionals were talking about the possibility that Covid-19’s effects could be long-lasting. It may have helped the group land meetings with public health leadership. During the WHO presentation, Davis presented the findings to the agency, and the support group was told at the end of the meeting that the WHO intended to launch a working group to study the impact of Covid-19 infections over time. “It’s really validating,” she says.
Phil Brown, one of the authors of Contested Illnesses and a University Distinguished Professor of Sociology and Health Sciences, and Director of the Social Science Environmental Health Research Institute at Northeastern University, says health agencies are being smart by meeting with Covid-19 long haulers. “People realize they made a number of mistakes with AIDS,” he says. “So I think the pump was primed to listen to more of these people.”
He adds that agencies should want as much information as possible on the impact of a novel virus as well as insights into what to expect in the future. “So many infectious diseases [can] become chronic, and they can affect other systems,” he says.
Covid-19 long hauler support groups are hoping to change the way the disease is viewed by the medical community in order to get access to treatment. In the absence of a medical consensus for treating long-lasting symptoms, the group is developing protocols of their own. Members of the Body Politic group spend substantial time reading research and articles about different ways to think about symptoms and sharing personal experiences with treatments and doctor referrals. “Obviously we are not doctors, but we are sitting here saying that we will be our own doctor until we can get the medical community to give us answers,” says Rachel Robles, who has had symptoms of Covid-19 since March.
The Body Politic team is working on their second survey, for which they already have thousands of responses. With this survey, the team hopes to fill in some of the gaps in their first report with more questions about testing results, neurological symptoms, and the role of mental health. The survey includes a section on cognitive dysfunction, a section on treatment and diagnostics, and symptoms over the first seven months (the first survey only looked at the first two months). They are asking about around 180 symptoms in total.
Their goal is to increase the geographic and demographic diversity of the responses and translate the survey into 10 languages (it’s translated into eight so far). This time, the group is following more scientific protocols, including receiving Institutional Review Board approval through University College London — where one of the members is faculty and runs a neuroscience lab — which gives the green light to the survey’s approach to data gathering. This survey is much more extensive and takes about an hour to fill out. There are over 4,500 responses from people in 70 countries, and the team began analyzing the data last week and hopes to have a preprint of the data published in the coming weeks.
“Anyone who knows anything about occupational medicine or environmental medicine knows that it’s the affected people who first find the problems,” says Brown. “If we don’t listen to people, we’re not doing our jobs as health professionals.”
