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

1
Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC University Medical Center, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands
2
Department of Clinical Research, Faculty of Infectious & Tropical Disease, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK
3
Warwick Medical School, University of Warwick, Coventry CV4 7HL, UK
4
Centre for Fertility and Health (CeFH), Norwegian Institute of Public Health, 0456 Oslo, Norway
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Statistics Unit, Riga Stradins University, LV-1007 Riga, Latvia
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ME/CFS Unit, Division of Rheumatology, Vall d’Hebron Hospital Research Institute (VHIR), Universitat Autònoma de Barcelona, 08035 Barcelona, Spain
7
Department of Hygiene, Epidemiology, Ergonomics and Postgraduate Education, Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń, 85-094 Bydgoszcz, Poland
8
Faculty of Health Studies, VID Specialized University, 0370 Oslo, Norway
9
Norway & National Advisory Unit on CFS/ME, Oslo University Hospital, 0424 Oslo, Norway
10
Faculty of Health and Society, Buckinghamshire New University, High Wycombe HP11 3JZ, UK
11
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
12
Neurology Department, ASST-Lecco, 23807 Merate, Italy
13
Department of Earth and Environmental Sciences and Centre for Health Technologies, University of Pavia, 27100 Pavia, Italy
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Department of Neurology, Medical Faculty Novi Sad, University of Novi Sad, 21000 Novi Sad, Serbia
15
Institute for Medical Immunology, Charité-Universitätsmedizin Berlin, 13353 Berlin, Germany
16
Centre of Statistics and Its Applications, University of Lisbon, 1749-016 Lisbon, Portugal
17
Institute of Microbiology and Virology, Riga Stradins University, LV-1007 Riga, Latvia
*
Author to whom correspondence should be addressed.
These authors have contributed equally as the senior authors.
These authors have contributed equally as the second authors.
§
The European Network on ME/CFS (EUROMENE) is provided in the Acknowledgments.
J. Clin. Med. 2020, 9(5), 1557; https://doi.org/10.3390/jcm9051557
Received: 9 April 2020 / Revised: 12 May 2020 / Accepted: 19 May 2020 / Published: 21 May 2020
(This article belongs to the Section Epidemiology & Public Health)
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. View Full-Text
Keywords: central nervous system diseases; infections; muscular diseases; post-exertional malaise; virus diseases central nervous system diseases; infections; muscular diseases; post-exertional malaise; virus diseases
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Estévez-López, F.; Mudie, K.; Wang-Steverding, X.; Bakken, I.J.; Ivanovs, A.; Castro-Marrero, J.; Nacul, L.; Alegre, J.; Zalewski, P.; Słomko, J.; Strand, E.B.; Pheby, D.; Shikova, E.; Lorusso, L.; Capelli, E.; Sekulic, S.; Scheibenbogen, C.; Sepúlveda, N.; Murovska, M.; Lacerda, E., on behalf of The European Network on ME/CFS (EUROMENE); Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology. J. Clin. Med. 2020, 9, 1557.

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