Can a consensus occur on a research case definition for ME/CFS?

ABSTRACT

Introduction: Many controversies have emerged around developing a consensus on a research case definition for ME and ME/CFS. To determine if there might be a consensus among patients, healthcare workers, and researchers, a brief questionnaire was distributed to an international group of patients to assess key issues involving ME and ME/CFS case definitions.

Method: Respondents were asked questions about core symptoms and other critical case definition issues.

Results: Overall, post-exertional malaise, cognitive impairment, fatigue, and unrefreshing sleep were the most endorsed core symptoms with at least 80% consensus among participants. Considerable support occurred for the ME-ICC (Myalgic Encephalomyelitis-International Consensus Criteria) and the Canadian Consensus Criteria (CCC), whereas the Fukuda Criteria received the least support. Items rated as important for a research case definition included the severity of the illness, onset type, duration of illness, illness course, exclusions, and comorbidities.

Conclusions: The implications of these findings for developing a consensus on research case definition criteria are discussed.

KEYWORDS:

• ME/CFS; research criteria; case definition; consensus; patient perspectives

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Leonard A. Jason

Leonard A. Jason is a professor of Psychology at DePaul University and the Director of the Center for Community Research.

Suvetha Ravichandran

Suvetha Ravichandran is a first year graduate student in the Clinical-Community Program at DePaul University.

Aiden Rathmann

Aiden Rathmann is an undergraduate psychology major at DePaul University.