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.