Systematic review of the epidemiological burden of ME/CFS across Europe: current evidence and EUROMENE research recommendations for epidemiology, by Fernando Estévez-López, Kathleen Mudie, Xia Wang-Steverding, Inger Johanne Bakken, Andrejs Ivanovs, Jesús Castro-Marrero, Luis Nacul, Jose Alegre, Paweł Zalewski, Joanna Słomko, Elin Bolle Strand, Derek Pheby, Evelina Shikova, Lorenzo Lorusso, Enrica Capelli, Slobodan Sekulic, Carmen Scheibenbogen, Nuno Sepúlveda, Modra Murovska, and Eliana Lacerda, on behalf of The European Network on ME/CFS (EUROMENE) in J. Clin. Med. 2020, 9 (5), 1557; [https://doi.org/10.3390/jcm9051557]
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
Excerpt from Conclusions:
Potential causes of this paucity of knowledge may be due to a European lack of (i) official disease recognition, (ii) consensus over case definitions, or (iii) investment by funding agencies, among others.