Cogut Institute for the Humanities, Brown University - Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)

A Q&A with Emily Lim Rogers who is a teacher and has a current research project about ME, "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 contacts of the United States".

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

quote:

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.

 

Heh, just like how it's always said that the only thing we have is symptom management.

If only we had symptom management. Most of us don't even have a GP, how can there even be any symptom management when most physicians literally refuse to even see us? Pffft.