Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)

Published January 10, 2022

Emily Lim Rogers teaches and conducts research at the intersection of disability studies; science, technology, and society; the medical humanities; gender/sexuality studies; and the history of capitalism. Her current research project centers on myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS, probing what scientific uncertainty about the illness reveals about the fraught gendered and racialized dynamics that determine who is considered ill and examining the uneven uptake of debility in the sociocultural context of the United States. In this Q&A, she reflects on her interest in the illness as “a puzzle without one single variable,” the factors that impact and often thwart diagnosis, the notion of recursive debility, and developments in the era of COVID-19. She is a Mellon Postdoctoral Fellow in the Department of American Studies, the Program in Science, Technology, and Society, and the Cogut Institute for the Humanities.

Your research shows how social and political factors have impacted the scientific understanding of myalgic encephalomyelitis, or chronic fatigue syndrome. What draws you to this subject?

Chronic fatigue syndrome — and now the term many people prefer is myalgic encephalomyelitis or ME/CFS — has existed in the taxonomies of American biomedicine for nearly four decades. It was first investigated by the U.S. Centers for Disease Control in the Lake Tahoe region in 1984. Its patient population consisted, initially, of a highly privileged set of people. They were mostly white, bourgeois, and well educated. Of course, the disbelief surrounding ME/CFS was overdetermined by the fact that they were mostly women, yet the point remains that they should have, hypothetically, been some of the best positioned people to advocate for the recognition of their disease and for the research dollars needed to investigate it.

I was drawn to studying the social and political factors of ME/CFS because there must be something more complicated at play here. The fact that it still remains contested must be more complicated than whether it is “real” or not (because it is, empirically, incredibly disabling), and it must be more complicated than simply the social status of its patients. It’s a puzzle without one single variable, and I also found that no academic monographs existed on this topic. At first, when I began this project in my first year of my Ph.D. program, it started as gap filling. But actually ME/CFS reveals a lot about American biomedicine itself — about who determines who can be ill, and what the stakes are in so doing.

I was drawn to studying the social and political factors of ME/CFS because there must be something more complicated at play here. The fact that it still remains contested must be more complicated than whether it is “real” or not (because it is, empirically, incredibly disabling), and it must be more complicated than simply the social status of its patients. It’s a puzzle without one single variable …

What is the scientific status of ME/CFS today? In your writing, you use the term “incomplete medicalization,” but could you elaborate on that?

ME/CFS remains “incompletely medicalized,” by which I mean things are missing or spotty at four levels. First, there is clinical practice: people with ME/CFS have few specialists to turn to and have no approved drugs and few consistently effective treatments, and most doctors throw up their hands at best or label patients malingerers at worst. Second, there is the scientific level: we haven’t found discrete biomarkers (or biologically verifiable signs of disease), and we don’t fully understand how ME/CFS works and why some people stay sick after a viral or other infectious event and others do not. Third, there is the issue of bureaucratic support: the state and insurance companies systemically deny material supports to people with ME/CFS when they can’t work. Fourth, there is the social level: people with ME/CFS are faced with interpersonal doubt; they are lacking care; and their debility means they are often isolated from participation in public society. 

These realms are analytically separable but are not in practice. They are constantly tying into each other. This is what makes ME/CFS a particularly knotty issue. My work tries to pull on these threads to see how we can unravel ME/CFS’s incomplete medicalization.

Your research calls into question the diagnostic process determining the transformation of individual bodily experiences into shared scientific protocols. In the case of ME/CFS, what are the factors influencing the diagnosis?

One’s social position impacts who can get a diagnosis. Who is seen as malingering and who is seen as legitimately ill is highly determined by race, gender, class, and other factors. This is longstanding in American culture, in particular. In addition to bias at the doctor’s office, there are profound structural factors at play. There are only a dozen or so ME/CFS specialists in the country. They all have long waitlists, and many do not take insurance at all — patients must pay out of pocket, in cash, to see them.

I also think that social position ties in to who sees medicine as something that could help them, in the first place. In conducting my research, I spoke to many patients, and they were disproportionately white. Another striking feature was that many were nurses or worked in healthcare bureaucracy. They could speak the language of doctors and did not necessarily have existing skepticism toward medical institutions. This scales all the way up and back again to who the stereotypical ME/CFS patient is. But I will stress that the whiteness of ME/CFS is just that — a stereotype. People of all races (and genders) can get ME/CFS. To not resist this stereotype is to indulge a trope that is reminiscent of polio, to take one example, where Black Americans were not seen as even able to get the disease (historian Naomi Rogers has written about this). Thus, the stereotype makes it even harder for people of color to receive a diagnosis.

[T]he whiteness of ME/CFS is just that — a stereotype. People of all races (and genders) can get ME/CFS. [… T]he stereotype makes it even harder for people of color to receive a diagnosis.

On the one hand, you denounce the “shadow of malingering under which [ME/CFS] is shrouded” due to the lack of a biomarker for its diagnosis; on the other, you stress the potential risks implied in the definition of a biomarker. How can these two aspects be balanced?

Singling out disease entities is both necessary and perilous. It is necessary to unlock the material supports and care that people with ME/CFS require to live their lives, while at the same time, I believe it can be erosive of coalition-building between chronically ill groups. Advocacy focusing on a single disease may help legitimize it in the eyes of biomedicine, but at the end of the day, we are facing a wave of chronic illnesses that is tied not just to a single biomarker, but to larger-scale changes in our environments, food systems, antibiotic use, etc. — what sociologist Hannah Landecker called the biology of history, as our very biologies are shifting under our feet and modulating our immune systems, our guts, etc., but without biomedicine’s ability to fully apprehend its ramifications.

Advocacy focusing on a single disease may help legitimize it in the eyes of biomedicine, but at the end of the day, we are facing a wave of chronic illnesses that is tied not just to a single biomarker, but to larger-scale changes in our environments, food systems, antibiotic use, etc.

I don’t view my work so much as trying to balance these aspects, but rather as trying to explore the real binds biomedicine puts people in. In actuality, we’d have to change a system of divvying up state supports based on who can get an authoritative medical diagnosis or exam, and change our mindset away from scarcity when it comes to disability. I think ME/CFS illuminates the cruel positions that our system of privatized healthcare and gutted social safety net forces people into.

In your work you elaborate the concept of “recursive debility” in order to explain the mechanism that pushes people affected by ME/CFS outside the sphere of political representation. Do you see recursive debility as specific to chronic fatigue syndrome or as characteristic of a wider marginalization process?

It is part of a wider marginalization process, but I think it is particularly acute when the thing causing debility is shrouded in doubt, and crucially, when it is defined by debilitating exhaustion caused after any form of exertion. Debility sustains itself, becomes “recursive,” because a lack of biomarker sustains doubt, doubt creates societal disinterest, societal disinterest means no research dollars, no research dollars means no treatments, and no treatments means people with ME/CFS cannot move through the social world in the same ways that nondisabled people can. This could be true of other illnesses, as well, particularly ones surrounded by doubt and ones that cause nonspecific symptoms that make participation in public life difficult.

How has the COVID-19 pandemic impacted people affected by ME/CFS?

Back in October 2020, based on observations earlier that year, I wrote that people with ME/CFS were one of few social groups for whom quarantine changed little about their day-to-day lives; they were already accustomed to only leaving the house a few times a month to get groceries, and socializing over Zoom. But as for the pandemic at large, a lot has changed, because then “long COVID” came and the implications of my research multiplied. It’s meant that — suddenly — there actually is societal interest in understanding post-viral syndromes (of which ME/CFS is one). From what I am hearing, ME/CFS activists view this as an opportunity, but they also express frustration. It is an opportunity because the research dollars flowing into long COVID may help understand the mechanisms of ME/CFS, too (people with long COVID are increasingly getting diagnosed as having ME/CFS). Moreover, it’s been actually very inspiring to see the incredible coalition-building between long COVID and ME/CFS activists. And yet, it can be difficult for people with ME/CFS — many of whom have been sick for decades with no sign of relief — to watch this sudden interest. Where was the concern before?

[I]t’s been actually very inspiring to see the incredible coalition-building between long COVID and ME/CFS activists. And yet, it can be difficult for people with ME/CFS — many of whom have been sick for decades with no sign of relief — to watch this sudden interest. Where was the concern before?

It remains to be seen whether developments around long COVID will better the material lives of people with ME/CFS, or with long COVID for that matter. It could end up as another disease of disinterest, or we could see a real change in how chronic illness is treated. I am monitoring this in my research. For the moment, all I can say is that I hope it’s the latter.