SFS Professor Emily Mendenhall exemplifies the sweeping array of expertise within the School of Foreign Service faculty. She’s a Guggenheim Fellow and a medical anthropologist, and she’s also the new director of the Science, Technology International Affairs (STIA) program at SFS. As a researcher, Mendenhall publishes in anthropology, medicine, psychology and public health. Co-author of a recent article, “Digital activism in Kenya: moving from the digital center to the digital periphery of Long Covid experience,” in Globalization and Health, she answered a few related questions about Long COVID, vaccine politics and how digital activism has helped Long COVID patients find resources and community.
Q. Your article about Long COVID focuses on digital activism, or hashtag activism, and online groups in Slack and Facebook serving as important means of sharing information about Long COVID among sufferers. Why was, and is, Long COVID a condition so suited to this type of activism and engagement?
A. HIV/AIDS patient activism transformed the relationship between patient, provider and politics. It was through the decades of grassroots activism—from the streets to the boardroom to the clinic—that activists realized they could transform the medical and policy landscape to take their urgent needs seriously. Other patient activist groups—such as for breast cancer or leukemia—have built on the model laid by the HIV/AIDS movement. However, the Long COVID activist movement proved to be something different. It was the first health condition defined by a patient activist online (in fact, on Twitter!) and the first movement that was built largely from a digital platform. Although there are many groups and pockets of activists who built online communities, the arguably most wide-reaching group was built from an already existing body of health and community activists—Body Politic. These activists—all women-presenting—transformed the Long COVID community from a collection of dissociated people with unexplained and unverifiable symptoms into a global movement dedicated to studying, understanding and advocating for care around their debilitating health.
Q. By focusing on two women in Kenya, you draw distinctions between “elite” and “non-elite” patients in terms of their access to information online. There are some cultural considerations specific to Kenya, like a reticence to share symptoms and illness profiles online, at play as well. Setting aside variables specific to Kenya, are there broader conclusions you can draw about how digital access affects medical access and care for Long COVID patients globally?
A. The notion of elite patients was related to their digital literacy and access to global networks and financial resources. Complex chronic conditions like Long COVID often have limited health precedence, making paying for care and accessing care difficult (regardless of where you live) in part because of the unverifiability of the condition ,meaning there is no biological marker, rash, or bumps to indicate you have it. Because such conditions have been sidelined in research and medicine for so long, fewer treatments are available, and many people access information about what their symptoms mean and how they might mitigate those symptoms through online patient communities. Many people pay out of pocket for care as a result, making this a unique situation in which those who are able to advocate for care are the ones who are able to get better. This means many people try all sorts of treatments—from biomedicine to Chinese medicine, Ayurvedic, herbs and local traditional therapies. I think many people who are non-elite, particularly in the frame of digital activism, are left to seek care through other diagnoses they might already have, like type 2 diabetes or high blood pressure, which open up access to primary care but don’t necessarily get to the root of the problem.
Q. As AI enters mainstream life, I wonder: is there a danger that Long COVID and other complex conditions, like Chronic Fatigue Syndrome (CFS), which “destabilize the body across multiple systems,” will become even more difficult to identify and treat, since it is less likely that patients may encounter human medical professionals at some entry points to care. Is this a possibility, or do we really need to wait to see how it plays out?
A. This is an interesting question. It might be that AI improves people’s access to care because it provides a wide-reaching review of multiple sources that their doctors may not be reading. Part of the problem is that there is a bias in medicine against patients with conditions like ME/CFS [Myalgic encephalomyelitis/Chronic Fatigue Syndrome] and Long COVID simply because there is not a verifiable test, and some clinicians are not sure how to treat them. This leads to some disbelief and mistrust among patients and providers. It might be that AI might change this dynamic for the better (but I’m an optimist, and we don’t have enough information to know how this might play out!).
Q. Secretary of Health and Human Services Robert F. Kennedy Jr. announced in May that the FDA and CDC would begin only approving COVID vaccine booster shots for people who are at high risk for serious complications from COVID because they are age 65 or older or have risk factors for health problems that make them vulnerable. Then, there was a more nuanced version of the recommendation released that leaves open the door for vaccinations of healthy children. Having conducted more than 20 interviews with Long COVID patients for this article, do you have concerns about these new rules and recommendations from the FDA? If so, what are they?
A. I’ve conducted more than 150 formal interviews for my new book Invisible Illness: A History, from Hysteria to Long Covid, which comes out in January. This research in Kenya [for the article in Globalization and Health] was for a side project with my colleague, Edna Bosire, with whom I have been working for more than a decade. Based on the hundreds of formal and informal interviews with patients with these conditions, I can tell you that the greatest risk right now, in my view, is for people who are already living with a disability or disabled from Long COVID. As viruses survive, they become less virulent, which is why most people who are completely disabled by their COVID-19 infection were infected (one or, often, more times) in the first two years of the pandemic. This is one reason why quarantine and masks were so important during that first year. However, I argue in my book that it’s not only about an infection; rather, it’s about thresholds, and for many people who are severely disabled by the condition, the virus serves as a tipping point, complicating already existing health stresses and amplifying their sickness as a result.
Q. In July, you became the new director of the Science, Technology and International Affairs (STIA) program. We are living in a time in which people seem more inclined to trust technology than science—and many trust strangers on the Internet more than doctors. How does the STIA program approach preparing students in a world currently rife with disinformation and skepticism about science?
A. The STIA faculty are planning to launch a new magazine called Science Politics, which will take a balanced view of the politics, values and ethics of challenges and innovation related to science, technology and the environment. We believe that by cultivating dialogue and public-facing writing that is easily accessible and widely circulated as print and audio, we can make a dent in these critical debates. Stay tuned, and please contact me if you’d like to support this work!