The role of clinical guidelines for chronic fatigue syndrome/myalgic encephalomyelitis in research settings

Abstract

Background: Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME) is a particularly difficult illness to identify. To aid in classifying patients for research as well as clinical care, potential cases may be evaluated according to clinical guidelines. Purpose: The purpose of this paper is to provide an overview of three sets of guidelines currently available: the Centers for Disease Control and Prevention (CDC) Toolkit; the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Primer; and the International Consensus Primer. Methods: These guidelines were examined and compared with respect to required symptoms, laboratory and investigative protocols, and exclusionary and comorbid conditions. The comparisons were also intended to evaluate the guidelines in light of new research that advances the clinical understanding of CFS/ME and assists in identifying patients. Results: Guidelines vary significantly in the symptoms and comorbidities considered in light of the differing symptom requirements of three case definitions. There is also no specification on how symptoms should be measured, contributing to the significant heterogeneity found in CFS/ME. Conclusions: Further revision of clinical guidelines, preferably based on a definition that is well-informed by current empirical studies, is recommended to ensure that guidelines are applied with consistency and understanding in both research and clinical settings.

Epidemiological characteristics of chronic fatigue- syndrome/myalgic encephalomyelitis in Australian patients

“…22 – 24 Indeed, the significant variability found between case definitions for CFS/ME is an immediate cause of confusion for clinicians and researchers alike. 25 Further reasons include limited knowledge, lack of recognition for the disorder, and limited contact with CFS/ME patients who do not access care due to the severity of their condition as well as their low expectations for receiving adequate care and support. 26 …”

A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis

“…An important consideration is a consistent method of applying criteria [ 41 ]. Reliance on self-reporting versus evaluation of cases by a physician can be a particular source of variability in reported cases of CFS/ME [ 42 ].…”

“…The current primer however, does lack specifications on how to apply the definition in a research setting. This includes quantifiable measures on the severity and frequency of symptoms, in order to be considered significant in CFS/ME and its operationalization is discussed further by Johnston et al [ 41 ].…”

Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

“…To redress the confusion created by so many case definitions, a clinical guideline IACFS/ME primer for General Health Practitioners (GPs) was developed in 2012 by a panel of experts from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) [21]. This included commonly used clinical guidelines, but showed considerable variation in symptoms and co-morbidities from those based on individual case definitions [25]. A detailed review of the criteria used to diagnose ME/CFS was released in 2015 by the Institute of Medicine (IOM) of the Academy of Sciences USA [6] along with a simplified core set of diagnostic criteria.…”