Society for Medical Anthropology
Oral Presentation Session
People who suffer from myalgic encephalomyelitis (ME/CFS) have long struggled to have their disease recognized as both a biological fact and a biomedical category (Dumit 2006). In the mid-2000s, Dumit characterized ME/CFS as a “therapeutically diverse” and “legally explosive” illness with a contested and unknown etiology (Dumit 2006: 578). In recent years, emerging evidence for biomarkers and improvements in diagnostic technologies have helped patients achieve more recognition and legitimacy from various institutions and actors. Having an illness characterized by a strict “energy envelope,” or a finite amount of possible energy expenditure, people with ME/CFS must strategize and prioritize each act of daily living. For many patients who are bedridden, housebound, or neurocognitively challenged, maintaining supportive friendships and relationships can be a matter of life and death. This paper will examine how patients with ME/CFS mobilize emergent and changing biological facts, research, and visual media in their attempts to gain legitimacy from insurers, doctors, caregivers, and even family members, especially as they become increasingly dependent on these support networks. Because evidence of a biological etiology is crucial to these claims, psychological explanations of the illness threaten to throw their legitimacy, their clinical care, their household economies, and their most intimate social relations into deeper precarity.