European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

Luis Nacul^{1

2}, François Jérôme Authier³, Carmen Scheibenbogen⁴, Lorenzo Lorusso⁵, Ingrid Bergliot Helland⁶, Jose Alegre Martin⁷, Carmen Adella Sirbu⁸, Anne Marit Mengshoel⁹, Olli Polo¹⁰, Uta Behrends¹¹, Henrik Nielsen¹², Patricia Grabowski¹³, Slobodan Sekulic¹⁴, Nuno Sepulveda¹⁵, Fernando Estévez-López¹⁶, Pawel Zalewski¹⁷, Derek F H Pheby¹⁸, Jesus Castro-Marrero¹⁹, Giorgos K Sakkas²⁰, Enrica Capelli²¹, Ivan Brundsdlund²², John Cullinan²³, Angelika Krumina²⁴, Jonas Bergquist^{25

26}, Modra Murovska²⁷, Ruud C W Vermuelen²⁸, Eliana M Lacerda²⁹

Affiliations

¹ London School of Hygiene and Tropical Medicine, Faculty of Infectious and Tropical Diseases, London WC1E 7HT, UK.
² BC Women's Hospital, Vancouver, BC V6H 3N1, Canada.
³ Faculty of Medicine Créteil-Paris Est, 94010 Creteil, France.
⁴ Institute of Medical Immunology, Charité-Universitätsmedizin Berlin, 10117 Berlin, Germany.
⁵ Neurology and Stroke Unit-Neuroscience Department-A.S.S.T.-Lecco, 23900 Merate, Italy.
⁶ National Advisory Unit on CFS/ME, Oslo University Hospital, Rikshospitalet OUS, 0372 Oslo, Norway.
⁷ Chronic Fatigue Unit, Hospital Universitari Vall d'Hebron University Hospital (VHIR), Universitat Autònoma de Barcelona, E-08035 Barcelona, Spain.
⁸ Central Military Emergency University Hospital, Titu Maiorescu University, 040441 Bucharest, Romania.
⁹ Institute of Health and Society, Medical Faculty, University of Oslo, Box 1089 Blindern, 0317 Oslo, Norway.
¹⁰ Bragée ME/CFS Center, 115 26 Stockholm, Sweden.
¹¹ Department of Pediatrics, School of Medicine, Technical University of Munich, 80333 Munich, Germany.
¹² Privat Hospitalet Danmark, 2920 Charlottenlund, Denmark.
¹³ Department of Hematology, Oncology and Tumor Immunology, Institute for Medical Immunology, Charite Medical School, 10117 Berlin, Germany.
¹⁴ Medical Faculty Novi Sad, University of Novi Sad, 21000 Novi Sad, Serbia.
¹⁵ Centre of Statistics and Its Applications, University of Lisbon, 1749-016 Lisbon, Portugal.
¹⁶ Erasmus MC University Medical Center, 3015 Rotterdam, The Netherlands.
¹⁷ Department of Hygiene, Epidemiology, Ergonomics and Postgraduate Education, Nicolaus Copernicus University in Torun, Collegium Medicum, 85-067 Bydgoszcz, Poland.
¹⁸ Society and Health, Buckinghamshire New University (retired), High Wycombe HP11 2JZ, UK.
¹⁹ Division of Rheumatology, ME/CFS Research Unit (Lab 009-Box 02), Vall d'Hebron Hospital Research Institute (VHIR), Val d'Hebron Hospital Research Unit (VIHR), Passeig de la Val d'Hebron 119-129, E-08035 Barcelona, Spain.
²⁰ Department of PE and Sports Science, University of Thessaly, 421 00 Trikala, Greece.
²¹ Department of Earth and Environmental Sciences, University of Pavia, 27100 Pavia, Italy.
²² Department of Regional Health Research, University Hospital of Southern Denmark, 5000 Odense, Denmark.
²³ School of Business & Economics, National University of Ireland Galway, University Road, H91 TK33 Galway, Ireland.
²⁴ Department of Infectiology and Dermatology, Riga Stradins University, LV-1067 Riga, Latvia.
²⁵ Department of Chemistry-Biomedical Center, Analytical Chemistry and Neuro Chemistry, Uppsala University, 751 23 Uppsala, Sweden.
²⁶ The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centre, Uppsala University, 751 23 Uppsala, Sweden.
²⁷ Institute of Microbiology and Virology, Riga Stradins University, LV-1067 Riga, Latvia.
²⁸ CFS/ME Medical Centre, 1078 Amsterdam, The Netherlands.
²⁹ Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, UK.

PMID: 34069603
PMCID: PMC8161074
DOI: 10.3390/medicina57050510

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

Luis Nacul et al. Medicina (Kaunas). 2021.

. 2021 May 19;57(5):510.

doi: 10.3390/medicina57050510.

Authors

Affiliations

¹ London School of Hygiene and Tropical Medicine, Faculty of Infectious and Tropical Diseases, London WC1E 7HT, UK.
² BC Women's Hospital, Vancouver, BC V6H 3N1, Canada.
³ Faculty of Medicine Créteil-Paris Est, 94010 Creteil, France.
⁴ Institute of Medical Immunology, Charité-Universitätsmedizin Berlin, 10117 Berlin, Germany.
⁵ Neurology and Stroke Unit-Neuroscience Department-A.S.S.T.-Lecco, 23900 Merate, Italy.
⁶ National Advisory Unit on CFS/ME, Oslo University Hospital, Rikshospitalet OUS, 0372 Oslo, Norway.
⁷ Chronic Fatigue Unit, Hospital Universitari Vall d'Hebron University Hospital (VHIR), Universitat Autònoma de Barcelona, E-08035 Barcelona, Spain.
⁸ Central Military Emergency University Hospital, Titu Maiorescu University, 040441 Bucharest, Romania.
⁹ Institute of Health and Society, Medical Faculty, University of Oslo, Box 1089 Blindern, 0317 Oslo, Norway.
¹⁰ Bragée ME/CFS Center, 115 26 Stockholm, Sweden.
¹¹ Department of Pediatrics, School of Medicine, Technical University of Munich, 80333 Munich, Germany.
¹² Privat Hospitalet Danmark, 2920 Charlottenlund, Denmark.
¹³ Department of Hematology, Oncology and Tumor Immunology, Institute for Medical Immunology, Charite Medical School, 10117 Berlin, Germany.
¹⁴ Medical Faculty Novi Sad, University of Novi Sad, 21000 Novi Sad, Serbia.
¹⁵ Centre of Statistics and Its Applications, University of Lisbon, 1749-016 Lisbon, Portugal.
¹⁶ Erasmus MC University Medical Center, 3015 Rotterdam, The Netherlands.
¹⁷ Department of Hygiene, Epidemiology, Ergonomics and Postgraduate Education, Nicolaus Copernicus University in Torun, Collegium Medicum, 85-067 Bydgoszcz, Poland.
¹⁸ Society and Health, Buckinghamshire New University (retired), High Wycombe HP11 2JZ, UK.
¹⁹ Division of Rheumatology, ME/CFS Research Unit (Lab 009-Box 02), Vall d'Hebron Hospital Research Institute (VHIR), Val d'Hebron Hospital Research Unit (VIHR), Passeig de la Val d'Hebron 119-129, E-08035 Barcelona, Spain.
²⁰ Department of PE and Sports Science, University of Thessaly, 421 00 Trikala, Greece.
²¹ Department of Earth and Environmental Sciences, University of Pavia, 27100 Pavia, Italy.
²² Department of Regional Health Research, University Hospital of Southern Denmark, 5000 Odense, Denmark.
²³ School of Business & Economics, National University of Ireland Galway, University Road, H91 TK33 Galway, Ireland.
²⁴ Department of Infectiology and Dermatology, Riga Stradins University, LV-1067 Riga, Latvia.
²⁵ Department of Chemistry-Biomedical Center, Analytical Chemistry and Neuro Chemistry, Uppsala University, 751 23 Uppsala, Sweden.
²⁶ The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centre, Uppsala University, 751 23 Uppsala, Sweden.
²⁷ Institute of Microbiology and Virology, Riga Stradins University, LV-1067 Riga, Latvia.
²⁸ CFS/ME Medical Centre, 1078 Amsterdam, The Netherlands.
²⁹ Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, UK.

PMID: 34069603
PMCID: PMC8161074
DOI: 10.3390/medicina57050510

Abstract

Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)-COST action 15111-from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.

Keywords: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; care; diagnosis; health services.

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Conflict of interest statement

CS has a clinical study grant and speaker honoraria from Takeda and Fresenius and is consultant for Celltrend. RV is consultant for Alfasigma SpA Bologna Italy. JAM has collaborated with Vitae, Pharmanord, Vinas Laboratories, in research on coenzyme Q10, NADH, selenium, and melatonin and has a patent with Grifols Laboratories for the use of alpha-1-antiprypsin in CFS. LN has been a Committee Member, UK NICE guidelines on ME/CFS 2021. JC-M has received research support and honoraria from VITAE Health Innovation, PharmaNord, Viñas Laboratories on treatments of Coenzyme Q10 plus NADH, selenium, and melatonin plus zinc in people with ME/CFS from Spain. All other authors declare no conflicts of interest.

References

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European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

Affiliations

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

Authors

Affiliations

Abstract

Conflict of interest statement

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical