Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology

Abstract

This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. We conducted a primary search in Scopus, PubMed and Web of Science for publications between 1994 and 15 June 2019 (PROSPERO: CRD42017078688). Additionally, we performed a backward-(reference lists) and forward-(citations) search of the works included in this review. Grey literature was addressed by contacting all members of the European Network on ME/CFS (EUROMENE). Independent reviewers searched, screened and selected studies, extracted data and evaluated the methodological and reporting quality. For prevalence, two studies in adults and one study in adolescents were included. Prevalence ranged from 0.1% to 2.2%. Two studies also included incidence estimates. In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. To overcome the shortcomings of the current state-of-the-art, EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control & Prevention−1994, Canadian Consensus Criteria, or Institute of Medicine criteria.

Post-Exertional Malaise May Be Related to Central Blood Pressure, Sympathetic Activity and Mental Fatigue in Chronic Fatigue Syndrome Patients

“…Future studies should further examine if PEM is a distinct characteristic feature, on which basis a subgroup of CFS patients might be distinguished, or whether PEM is related directionally or non-directionally to other symptoms from which CFS patients suffer. In addition, it was suggested that further multi-center studies on CFS should apply the same protocols [ 46 ]. Therefore, it is necessary to make a decision as to whether PEM should be a symptom required for CFS diagnosis, which would have an impact on the types of criteria of CFS used in research.…”

Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched

“…[ 8 ], while Norway and others use diagnostic codes (ICD-10, G.93.3) reported in broader nationwide registries [ 5 ]. As it is unclear if the type of diagnostic criteria or case definitions used influences the findings of primary studies, the way the patients are diagnosed should be clearly stated and, ideally, standardized in future studies [ 17 ].…”

Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“…The severity of the illness ranges, from ambulant to housebound [ 5 ]. A 2020 EUROMENE review found that prevalence ranged from 0.1–2.2% [ 6 ]. An American report from 2015, summarizing more than 9000 papers about illness, concluded that “ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the daily activities of affected patients” [ 7 ].…”