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, François Jérôme Authier, Carmen Scheibenbogen, Lorenzo Lorusso, Ingrid Bergliot Helland, Jose Alegre Martin, Carmen Adella Sirbu, Anne Marit Mengshoel, Olli Polo, Uta Behrends, Henrik Nielsen, Patricia Grabowski, Slobodan Sekulic, Nuno Sepulveda, Fernando Estévez-López, Pawel Zalewski, Derek F H Pheby, Jesus Castro-Marrero, Giorgos K Sakkas, Enrica Capelli, Ivan Brundsdlund, John Cullinan, Angelika Krumina, Jonas Bergquist, Modra Murovska, Ruud C W Vermuelen, Eliana M Lacerda, Luis Nacul, François Jérôme Authier, Carmen Scheibenbogen, Lorenzo Lorusso, Ingrid Bergliot Helland, Jose Alegre Martin, Carmen Adella Sirbu, Anne Marit Mengshoel, Olli Polo, Uta Behrends, Henrik Nielsen, Patricia Grabowski, Slobodan Sekulic, Nuno Sepulveda, Fernando Estévez-López, Pawel Zalewski, Derek F H Pheby, Jesus Castro-Marrero, Giorgos K Sakkas, Enrica Capelli, Ivan Brundsdlund, John Cullinan, Angelika Krumina, Jonas Bergquist, Modra Murovska, Ruud C W Vermuelen, Eliana M Lacerda

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.

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.

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