Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology.
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, Eliana Lacerda
Author Information
Fernando Estévez-López: Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC University Medical Center, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands. ORCID
Kathleen Mudie: Department of Clinical Research, Faculty of Infectious & Tropical Disease, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK. ORCID
Xia Wang-Steverding: Warwick Medical School, University of Warwick, Coventry CV4 7HL, UK.
Inger Johanne Bakken: Centre for Fertility and Health (CeFH), Norwegian Institute of Public Health, 0456 Oslo, Norway. ORCID
Andrejs Ivanovs: Statistics Unit, Riga Stradins University, LV-1007 Riga, Latvia. ORCID
Jesús Castro-Marrero: ME/CFS Unit, Division of Rheumatology, Vall d'Hebron Hospital Research Institute (VHIR), Universitat Autònoma de Barcelona, 08035 Barcelona, Spain. ORCID
Luis Nacul: Department of Clinical Research, Faculty of Infectious & Tropical Disease, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK. ORCID
Jose Alegre: ME/CFS Unit, Division of Rheumatology, Vall d'Hebron Hospital Research Institute (VHIR), Universitat Autònoma de Barcelona, 08035 Barcelona, Spain. ORCID
Paweł Zalewski: Department of Hygiene, Epidemiology, Ergonomics and Postgraduate Education, Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń, 85-094 Bydgoszcz, Poland. ORCID
Joanna Słomko: Department of Hygiene, Epidemiology, Ergonomics and Postgraduate Education, Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń, 85-094 Bydgoszcz, Poland. ORCID
Elin Bolle Strand: Faculty of Health Studies, VID Specialized University, 0370 Oslo, Norway.
Derek Pheby: Faculty of Health and Society, Buckinghamshire New University, High Wycombe HP11 3JZ, UK. ORCID
Evelina Shikova: Department of Virology, National Center of Infectious and Parasitic Diseases, Sofia, Bulgaria & The National Specialized Hospital for Active Treatment in Haematological Diseases, 1233 Sofia, Bulgaria. ORCID
Lorenzo Lorusso: Neurology Department, ASST-Lecco, 23807 Merate, Italy. ORCID
Enrica Capelli: Department of Earth and Environmental Sciences and Centre for Health Technologies, University of Pavia, 27100 Pavia, Italy.
Slobodan Sekulic: Department of Neurology, Medical Faculty Novi Sad, University of Novi Sad, 21000 Novi Sad, Serbia. ORCID
Carmen Scheibenbogen: Institute for Medical Immunology, Charité-Universitätsmedizin Berlin, 13353 Berlin, Germany. ORCID
Nuno Sepúlveda: Department of Clinical Research, Faculty of Infectious & Tropical Disease, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK. ORCID
Modra Murovska: Institute of Microbiology and Virology, Riga Stradins University, LV-1007 Riga, Latvia. ORCID
Eliana Lacerda: Department of Clinical Research, Faculty of Infectious & Tropical Disease, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK. ORCID
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.
