social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness.
Social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness. "Contested" here describes not just disagreement about the finer details of etiology or treatment, but wholesale doubt about the existence of the illness as a distinct and discrete medical entity - contested illnesses are ontologically contested.
A useful concept? well...maybe. (No. It's no.) Describing an illness as "contested" necessitates that we reproduce the medical literature as genuinely ambivalent, and in the case of me/cfs, this is downright misleading. We certainly do not know everything about me/cfs, but there *is* robust evidence for immunological and neurological abnormalities among me/cfs patients. There has been for 30 years. and the evidence that pwme/cfs are really experiencing something else entirely - depression, or deconditioning, or whatever - is comparatively extremely thin. Like...cheesecloth.
On the surface, it might look like the medical lit contradicts itself, but we as researchers can't this at face value. we know that medical research is political, mired in social and institutional controversy, subject to bias and manipulation - this is not news! but the term 'contested illness' captures none of this - in fact, it reproduces more controversy where there should be less. There's a lot we don't know about me/cfs, but the "contested illness" framing more often than not elides the fact that there's also a lot we DO know. framing this illness as wholly mysterious is misleading, and ultimately does a disservice to patients, who suffer both from a debilitating illness and from its marginal, stigmatized status.
Me/cfs is just one of many illnesses that gets glossed as 'contested' - what are we missing about the others? can we actually contribute to resolving these debates if we're hanging our whole analytical hat on the notion of controversy?
