Patient Activism
Thinking about how these communities emerge, differ, and what they do
Patient activism has been central to people’s experiences living with emergent illness in the past 100 years. This is in part because our systems are broken, causing people around the world for different reasons to feel abandoned by government, clinics, and in some cases, families. Long Covid activism has been central to pandemic experiences since 2020, when many people discovered they could not recover—often feeling fearful and alone. It was these online communities not only in the US but also around the world that bound them together, and cultivated a community to share symptoms, experiences, and ways of healing and living with these new complicated and challenging symptoms. This week I’m thinking about what patient activism emerged, what they did, and how this relates to other forms of patient activism for other illnesses and contexts.
In May of 2020, Dr. Eliza Perego used the term Long Covid on Twitter for the first time, describing a condition that summarized her own disease experience as “cyclical, progressive, and multiphasic.” At the same time Fiona Lowenstein had cultivated the Body Politic online support group in What’s App for people suffering from Long Covid, which eventually grew to help more than 14k members around the world. She explained, “I felt alone in my healing process. I wanted information, and to connect with others who shared my experience.” Patient activism has been central to designing the movement around Long COVID, pushing boundaries about what people know, who knows what, and what solutions are pushing forward.
Body Politic eventually was transferred to Slack, where several channels opened, including one called “data nerds.” Lisa McCorkell told me, “Everyone was sharing their experiences, sharing their symptoms. But we couldn't really identify if they were like specific trends, or like what we really had in common with each other. And so we put together a survey to try to organize that a little better, and that was what ended up being the first known and posted research on long Covid and the birth of patient led research collaborative.” Hannah Davis, Lisa McCorkell, Gina Assaf, Hannah Wei, and Athena Akrami eventually spun off the “data” Slack channel into what is now formally known as the Patient-Led Research Collaborative, moving patient activism into a driving force changing the biomedical narrative through peer-reviewed scholarship. They wanted to “study ourselves” in part because they felt so dismissed by clinicians and in medical settings. Another arm of the Slack Channel was transformed into the Long Covid SOS.
I find the Patient-Led Research Collaborative to be an interesting and important model of scholarship. They published the first survey and research report of people with Long Covid in an open google doc. At the time, very limited research was available on Long Covid and this generated a great deal of attention; they eventually published it in the Lancet’s EClincial journal. They then conducted a follow up survey with more than 200 symptoms, which included write in symptoms from the first survey (like post-exertional malaise, tremors, tinnitus, heart palpitations), as well as social issues like one’s ability to work. Working with the data group, they soon changed this to a more formal organization called the Patient-Led Research Collaborative. They received a small grant from PCORI and then a big donation from crypto mogul Vitalik Buterin, which enabled Lisa and Hannah to leave their jobs and work on this project full time. The organization puts patient priorities, needs, and perspectives first. For instance, patients served as a review panel for determining what research projects should be funded. Lisa said, “We were the ones who really brought attention to what was happening. Then, really leading the way on the research side of things.” They also have a journal called Patient-Generated Hypotheses, which puts patient priorities and perceptions at the center of Long Covid research—something novel and path-breaking for medical science, which so often prioritizes the ideas and projects not only of scientists but also funders.
What’s interesting about the activism around Long Covid, which resembles activism around ME/CFS, is that it is persistent but also in many ways relegated to internal and private spaces where people can work from home through research, education, or policy activism. This does not mean it’s not impactful. The collective organizing on Twitter, What’sApp, Slack Channels, and Facebook has become iconic of the Long Covid experience and has resulted in immense sharing of information, self-prescription, and high out-of-pocket expenses for tests, medications, and alternative therapies. It has also transformed and escalated interest in research on ME/CFS, or Myalgic encephalomyelitis/chronic fatigue syndrome, which has stagnated and been marginalized and underfunded for years. However, the patient advocacy community for ME/CFS consistently organizes, despite having what medical anthropologist Emily Lim Rogers (2022) describes as the “dual-pronged challenge” of confronting “stigma caused by its lack of biological verification and societal acceptance” and protesting “in bodies that are exhausted” (413). Thinking about the important work the ME/CFS community is crucial because their extraordinary activism, particularly through ME Action, has brought the lives of millions of people who are quite frankly unable to put their bodies on line into the light.
I spoke to Dave Tuller, a public health journalist at Berkeley, who rubbed shoulders with Larry Kramer in the early days of the AIDS movement. As a young gay man in NYC, he worked with Act UP starting in 1986. They marched on Washington and he was arrested twice, laying his body on the line to raise awareness that his friends were dying. When he moved to San Francisco in 1988, he stopped putting his body on the line and started working with a pen. This interest in HIV eventually shifted to ME, where he has observed significant similarities and differences between the two. He told me, “In ME you can’t get super active because you’re sick. In HIV you’re super active until you’re really sick. If you do that when you have ME, the more you do, the more you’re going to get sick. They’ve done it with #MillionsMissing, or putting the shoes out. People can’t put their bodies on line, like they do in AIDS activism. If you have ME, activism will give you a severe case of post exertional malaise and make you much worse. That’s the big difference between the two conditions.”
Emily Lim Rogers described how the ME/CFS community knew there would be a big virus that would flood their community someday. Even Swine Flu caused a bump of ME/CFS cases. However, “they couldn’t have predicted the scale.” Rogers found there was some “resentment among activists because there hasn’t been concern for years and there are sheer numbers of people coming into the ME/CFS community and needing help – there isn’t enough admin support to support the number of Long Covid patients needing or wanting support.”
However, the role of patient activism in America—where communities build online to share information, conduct research, and collectively work to raise awareness—is not unique to America.
I spoke with Shreeja Banerjee, a graduate student in Delhi, India, who put her studies on hold not only to recover from Long Covid but also to advocate for others. Shreeja’s mother and sister live in another state so when she tested positive with COVID-19 in February 2021, she was on her own. She lost her taste, which was particularly troubling because she loves cooking—especially the strong and spicy tastes. She tested positive for 2.5. months; although the viral load lowered, she couldn’t test negative. She had debilitating fever through March, and because she was alone, she had to pace her energy to figure out simple things: how to have water ready next to her bed when the fevers got bad, how to cook, where to get food and medications. Shreeja had long been asthmatic so she knew how to eat and what to do to help her immune system: she started consuming foods that prevent inflammation (and did a number of other things I will write about later). Throughout this time, it was a WhatsApp group of others living with Long Covid that sustained her, and she also was in frequent contact with her doctor via WhatsApp. She started feeling better but couldn’t shake the “feeling like my battery was never full.” She explained, “I have an incredibly stressful life – I do five things all the time. It makes it very hard for me to recuperate. It makes me see how little I slow down.”
By July her smell came back. And she could taste what she was cooking—although not the most potent dishes. Shreeja threw herself into resource groups to call hospitals to see what supplies were in place for other people who were sick. They engaged in collective action to make sure hospitals had beds and supplies were available for people needing them. She describes how morbid this work could be, “I’d call to see if there was someone going to die that day, to see if there would be a bed the next day so I could tell people there would be a spot to seek care.” She said, “People were dying like rodents—I’m sad to say.” She explained, “People were like, we cannot burn any more dead. Bodies were piled up rotting.”
Shreeja spent so much time advocating for others with acute illness, she had to take a leave from graduate school. She coordinated three resource groups: oxygens, accessing medicine, and talking to medical suppliers. This collective action was unlike anything Americans living with Long Covid experienced.
However, the work of the Patient-Led Research Collaborative has had global impacts, particularly in supporting Long Covid Patients who feel dismissed in their clinical encounters. Shreeja said, “I think a huge mediating factor was how our doctors were thinking about it in that moment. One of the things or complications that I think a lot of epidemiologists were also writing about [sic] doctors who sit in their clinics and don't read much of their research. So there's a huge gap in terms of what was happening in terms of research and lab findings and doctors, reading or not reading them. As patients, we felt less cared for and less attended to. We were also doing our own research. We formed our own resource groups and tried figuring out. And what's happening. Twitter blew up the Facebook groups blew up. […] It's really hard to dissociate this identity of where you're the research and trying to figure out what's happening to your own health.”
https://www.washingtonpost.com/health/2023/09/17/fatigue-cfs-longcovid-mitochondria/
I was talking with my colleague Ranit Mishori this week who mentioned to me, “it’s the patients that have to drive the discoveries.” She mentioned Amanda Twinam’s journey (see WaPo piece) because her persistence in finding an answer to her disabling fatigue instigated profound discoveries for people living with ME/CFS and Long Covid. Although she recovered from breast cancer, her energy never came back. They found she had a genetic cancer disorder called LI-Fraumeni syndrome that is linked to breast cancer. Soon after she had another breast cancer scare, she knew something deeper was wrong. She had trouble standing and walking in her early 40s and dropped back to part-time work so she could care for her daughter and herself.
Twinam’s focus on decades-long fatigue brought her to the National Institutes of Health, which led to a new scientific discovery that may help us understand more about ME/CFS and Long Covid patients. She wrote to NIH investigator Paul Hwang and suggested that his research on how mice mitochondria—the powerhouse of the cell that produces energy—dysfunctioned might relate to her personal situation. While these mitochondria produced too much energy, she wondered if it might move in the other direction, too. Hwang wrote back saying, “Yes, I agree with you, it is possible that [your version of Li Fraumeni Syndrome] may be altering metabolism and causing your fatigue symptoms.”
Through an extensive and innovative search, they discovered that a protein called WASF3 was gumming up her mitochondria and turning down her cellular energy production. This led to exhaustion and fatigue from routine activity. When comparing to a study of ME/CFS, Hwang found the majority of ME/CFS patients similarly had this overproduction of protein. Although there is not yet a treatment for this condition, the legitimacy of this condition is meaningful for Twinam and many other people living with ME/CFS in part because it confirms a biological basis for their disabling fatigue.
These channels provided spaces for people to connect, share, and build community among their shared symptoms, experiences, and recoveries. These online communities exist for many patient communities (of various symptoms or diagnoses) and for many are lifelines for making it through bewildering times when few understand, recognize, or legitimize their suffering. Having others to confide in when the disabling world questions your lived reality is crucial. This is why the ME/CFS patient community has spent years cultivating ways for patients to access knowledge, care, and skills to advocate for themselves—all the while ensuring that these new patients do not feel alone or dismissed. These valuable lessons and tools are crucial for our understanding what is possible for moving the needle on care and legitimacy for people living with contested chronic illnesses now and in the future.