'What is it like to have ME?' The discursive construction of ME in computer-mediated communication and face-to-face interaction

Abstract

ME (Myalgic Encephalomyelitis) or CFS (chronic fatigue syndrome) is a debilitating illness for which no cause or medical tests have been identified. Debates over its nature have generated interest from qualitative researchers. However, participants are difficult to recruit because of the nature of their condition. Therefore, this study explores the utility of the internet as a means of eliciting accounts. We analyse data from focus groups and the internet in order to ascertain the extent to which previous research findings apply to the internet domain. Interviews were conducted among 49 members of internet groups (38 chatline, 11 personal) and 7 members of two face-to-face support groups. Discourse analysis of descriptions and accounts of ME or CFS revealed similar devices and interactional concerns in both internet and face-to-face communication. Participants constructed their condition as serious, enigmatic and not psychological. These functioned to deflect problematic assumptions about ME or CFS and to manage their accountability for the illness and its effects.