Online Health Communities in Controversy over ME/CFS and Long Covid

Abstract

The condition known variously as myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS has been steeped in controversy for 40 years or more. Long Covid, first noticed and named in 2020, has become entangled with the ME/CFS controversy because of striking similarities in the experiences of patients suffering from the two illnesses. Online health communities (OHCs) have played central roles in both controversies, but these are not the kinds of roles that have been so well-documented in prior literature. While prior research has established many ways in which participation in an OHC may benefit or otherwise affect community members themselves, this essay focuses on how OHCs contribute to positional shifts in health controversies that involve other communities as well. Using a framework for understanding health controversies as argumentative polylogues, I show that OHCs arguing with other players have made contributions that are both effective in gaining ground for the OHCs' own goals and in elevating the overall quality of the debate. Further, in some cases these contributions have been so innovative as to suggest surprising future trajectories for OHCs.

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

“…In line with this research, clinicians specialized in ME/CFS usually see ME/CFS as an organic disease (e.g., the U.S. ME/CFS Clinician Coalition [62]). The same is true for the vast majority of patients and their organizations [63]. Nevertheless, a vocal minority of researchers remains convinced of a psychosomatic (co-)causation of ME/CFS despite the frequently demonstrated organic abnormalities and the simultaneous lack of evidence for relevant psychosomatic factors.…”

“…In stark contrast to these widespread beliefs, empirical evidence does not support a psychosomatic etiology of ME/CFS [41]. There is also a broad consensus among patients with ME/CFS, as well as ME/CFS experts, that psychosomatic factors do not play a relevant role in the etiology as well as the clinical course of ME/CFS [62,63]. Psychosomatic etiology, such as the deconditioning hypothesis presented in the cognitive-behavioral model of ME/CFS [64], is assumed to involve cognitive appraisals that create an inaccurate perception of being sick and fatigued without a persistent physical cause.…”