Solving the ME/CFS criteria and name conundrum: the aftermath of IOM

ABSTRACT

In 2015, the Institute of Medicine (IOM) proposed a new name and set of clinical criteria for what had previously been referred to as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This committee recommended the adoption of the term systemic exertion intolerance disease (SEID) and clinical criteria that required specific symptoms such as post-exertional malaise and unrefreshing sleep. This article reviews efforts to evaluate the revised criteria as well as reactions to the new criteria and name. Since these recommendations have been made, the proposed name change has not been widely adopted by the scientific or patient community. Even though the IOM’s proposed criteria were intended to be a clinical rather than a research case definition, over the past few years, an increasing number of studies have employed these criteria for research purposes. One unwitting consequence of the IOM criteria, which excludes few other illnesses, is the broadening of the number of individuals who are diagnosed and included in research studies. There is still a need to implement the IOM’s recommendation to form a multidisciplinary committee to review research and policy changes following the release of the new criteria. We conclude by presenting a possible roadmap for overcoming barriers in order to make progress on developing a consensus for a name and criteria.

KEYWORDS:

• Case definition
• systemic exertion intolerance disease
• chronic fatigue syndrome
• myalgic encephalomyelitis

Disclosure statement

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

Notes

1 While there is agreement that the authors of this report intended on using SEID to replace ME/CFS as well as CFS, there has been disagreement in the interpretation of the IOM’s recommendations regarding whether SEID should also replace ME [18]. The authors of the IOM indicated reasons for not selecting the term ME, and wrote that “the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME” (p.70). Some have interpreted this to mean that SEID does not refer to ME, however, the authors of the IOM were in this passage specifying that case definitions of ME and CFS focused on slightly different symptoms, but they had indicated earlier that their new term SEID did refer to what has been referred to in the literature as ME/CFS, which they indicated included both ME and CFS.

2 Chu et al.’s [22] study first screened individuals for the Fukuda criteria with many of its exclusionary criteria. However, the SEID criteria does not have these exclusionary rules. So, the Chu et al.’s sample had already been screened and therefore was a reduced sample without exclusionary illnesses. By using this screened sample, Chu et al.’s research evaluated the SEID criteria without its most significant limitation that being patients with exclusionary illnesses could be inadvertently brought into research ME/CFS studies. Using this biased sample, we disagree with Chu et al.’s conclusion that the SEID criteria generally identifies similar patients as other existing case definition criteria. Even with this significant limitation of using a pre-screened sample without exclusionary illnesses, when Chu et al.’s sample was examined, with the severity and frequency criteria that we feel was required by the CCC and ME-ICC, 72% met SEID criteria whereas only 56% met CCC criteria and 45% met ME/ICC criteria. So, in this somewhat biased sample that had already been narrowed by exclusionary criteria, there is a relatively large difference between the number of patients who meet the CCC and ME-ICC criteria and the larger group selected by the IOM criteria. Regarding another issue in their study, only 38% of their sample met all four case definitions, thus again highlighting the variability in criteria and the importance of developing a consensus on one case definition.

3 Ironically, the CCC was initially developed as a clinical case definition rather than a research case definition. In addition, the Fukuda et al. [26] criteria were designed as research criteria, rather than as clinical criteria, but also ended up being used in clinical practice.

4 An alternative way of defining the illness could involve not having core symptoms, but requiring a number of symptoms (such as used by the Fukuda et al. [26] criteria and Holmes et al. [44] criteria) and/or a certain score being reached, such as the scoring system proposed by Bansal [45]. However, these original research case definitions were criticized for not requiring cardinal symptoms of ME/CFS including post-exertional malaise. For example, a patient could have up to 163 different combinations of polythetic symptoms using the Fukuda et al. [26] criteria [22].

Additional information

Notes on contributors

Leonard A. Jason

Leonard A. Jason is currently a Professor of Psychology at DePaul University and the Director of the Center for Community Research. His interests are in public policy, community building, evaluating recovery homes for those with substance abuse disorders, reducing stigma for those with chronic health conditions (i.e. chronic fatigue syndrome and Myalgic Encephalomyelitis), and preventing violence against urban youth. Jason is a former president of the Division of Community Psychology of the American Psychological Association (APA). Jason has served as the Vice President of the International American Association of CFS/ME. He also served as the Chairperson of the Research Subcommittee of the U.S. Chronic Fatigue Syndrome Advisory Committee. Jason has edited or written 30 books, and he has published over 800 articles and 100 book chapters. He has served on the editorial board of ten psychological journals. Jason has served on the review committees of the National Institutes of Health, and he has received over $46,500,000 in federal research grants.

Madeline Johnson

Madeline Johnson is currently a research assistant at the DePaul Center for Community Research. She graduated in 2018 with a BA in Developmental Psychology from the University of Illinois at Urbana-Champaign. Upon graduating, she was awarded high honors distinction by the psychology department for her completion of an outstanding undergraduate research thesis. Her interests lie in the realm of stigma and the associated psychological effects of chronic illness on patients and family members.