Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome - State of the art: Report of the 2nd international meeting at the Charité Fatigue Center

Sophie Steiner; Annick Fehrer; Friederike Hoheisel; Simon Schoening; Anna Aschenbrenner; Nina Babel; Judith Bellmann-Strobl; Carsten Finke; Øystein Fluge; Laura Froehlich; Andreas Goebel; Bettina Grande; Johannes-Peter Haas; Bettina Hohberger; Leonard A Jason; Anthony L Komaroff; Eliana Lacerda; Max Liebl; Andrea Maier; Olav Mella; Luis Nacul; Friedemann Paul; Bhupesh K Prusty; Christian Puta; Gabriela Riemekasten; Wolfgang Ries; Peter C Rowe; Birgit Sawitzki; Yehuda Shoenfeld; Joachim L Schultze; Martina Seifert; Nuno Sepúlveda; Franziska Sotzny; Elisa Stein; Michael Stingl; Friederike Ufer; Christian Veauthier; Francisco Westermeier; Klaus Wirth; Bernd Wolfarth; Pawel Zalewski; Uta Behrends; Carmen Scheibenbogen

doi:10.1016/j.autrev.2023.103452

Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome - State of the art: Report of the 2nd international meeting at the Charité Fatigue Center

Autoimmun Rev. 2023 Nov;22(11):103452. doi: 10.1016/j.autrev.2023.103452. Epub 2023 Sep 22.

Authors

Sophie Steiner¹, Annick Fehrer¹, Friederike Hoheisel², Simon Schoening³, Anna Aschenbrenner⁴, Nina Babel⁵, Judith Bellmann-Strobl⁶, Carsten Finke⁷, Øystein Fluge⁸, Laura Froehlich⁹, Andreas Goebel¹⁰, Bettina Grande¹¹, Johannes-Peter Haas¹², Bettina Hohberger¹³, Leonard A Jason¹⁴, Anthony L Komaroff¹⁵, Eliana Lacerda¹⁶, Max Liebl¹⁷, Andrea Maier¹⁸, Olav Mella⁸, Luis Nacul¹⁹, Friedemann Paul²⁰, Bhupesh K Prusty²¹, Christian Puta²², Gabriela Riemekasten²³, Wolfgang Ries²⁴, Peter C Rowe²⁵, Birgit Sawitzki²⁶, Yehuda Shoenfeld²⁷, Joachim L Schultze²⁸, Martina Seifert²⁹, Nuno Sepúlveda³⁰, Franziska Sotzny¹, Elisa Stein¹, Michael Stingl³¹, Friederike Ufer³², Christian Veauthier³³, Francisco Westermeier³⁴, Klaus Wirth³⁵, Bernd Wolfarth³⁶, Pawel Zalewski³⁷, Uta Behrends³⁸, Carmen Scheibenbogen¹

Affiliations

¹ Institute of Medical Immunology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin and Berlin Institute of Health (BIH), Berlin, Germany.
² Institute of Medical Immunology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin and Berlin Institute of Health (BIH), Berlin, Germany. Electronic address: friederike.hoheisel@charite.de.
³ ME/CFS Research Foundation, Hamburg, Germany.
⁴ Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Bonn, Germany.
⁵ Institute of Medical Immunology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin and Berlin Institute of Health (BIH), Berlin, Germany; Center for Translational Medicine and Immune Diagnostics Laboratory, Medical Department I, Ruhr-University Bochum, Marien Hospital Herne, University Hospital of the Ruhr-University Bochum, Herne, Germany; Berlin Institute of Health at Charité-Universitätsmedizin Berlin, BIH Center for Regenerative Therapies (BCRT), Charitéplatz 1, Berlin, Germany.
⁶ Department of Neurology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany; Experimental and Clinical Research Center, A Cooperation Between the Max Delbrück Center for Molecular Medicine in the Helmholtz Association and Charité-Universitätsmedizin Berlin, Berlin, Germany; Max Delbrück Center for Molecular Medicine in the Helmholtz Association (MDC), Berlin, Germany; NeuroCure Clinical Research Center, Charité Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, and Max Delbrück Center for Molecular Medicine, Berlin, Germany.
⁷ Department of Neurology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany.
⁸ Department of Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norway; Department of Clinical Sciences, University of Bergen, Bergen, Norway.
⁹ Center of Advanced Technology for Assisted Learning and Predictive Analytics (CATALPA), FernUniversität in Hagen, Germany.
¹⁰ Pain Research Institute, Institute of Life Course and Medical Sciences, University of Liverpool, and Walton Centre NHS Foundation Trust, Liverpool, UK.
¹¹ Psychotherapy and Psychoanalysis, Heidelberg, Germany.
¹² Deutsches Zentrum für Kinder- und Jugendrheumatologie, Zentrum für Schmerztherapie junger Menschen, Garmisch-Partenkirchen, Germany.
¹³ Department of Ophthalmology, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Germany.
¹⁴ Center for Community Research, DePaul University, Chicago, IL, USA.
¹⁵ Division of General Medicine, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
¹⁶ Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK.
¹⁷ Department of Physical Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin, Berlin, Germany.
¹⁸ Department of Neurology, Medical Faculty RWTH Aachen University, Aachen, Germany.
¹⁹ Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK; Women's Health Research Institute, British Columbia Women's Hospital, Vancouver, BC, Canada; Department of Family Practice, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
²⁰ Experimental and Clinical Research Center, A Cooperation Between the Max Delbrück Center for Molecular Medicine in the Helmholtz Association and Charité-Universitätsmedizin Berlin, Berlin, Germany; Max Delbrück Center for Molecular Medicine in the Helmholtz Association (MDC), Berlin, Germany; NeuroCure Clinical Research Center, Charité Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, and Max Delbrück Center for Molecular Medicine, Berlin, Germany.
²¹ Institute for Virology and Immunobiology, Julius-Maximilians University Würzburg, Würzburg, Germany.
²² Department of Sports Medicine and Health Promotion, Friedrich-Schiller-University Jena, Jena, Germany; Center for Interdisciplinary Prevention of Diseases Related to Professional Activities, Friedrich-Schiller-University Jena, Jena, Germany; Center for Sepsis Control and Care (CSCC), Jena University Hospital/Friedrich-Schiller-University Jena, Jena, Germany.
²³ Department of Rheumatology and Clinical Immunology, University of Lübeck, Lübeck, Germany.
²⁴ Internal Medicine, Department of Nephrology, Diakonissenkrankenhaus, Flensburg, Germany.
²⁵ Department of Pediatrics, Division of Adolescent and Young Adult Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD, USA.
²⁶ Translational Immunology, Berlin Institute of Health (BIH) & Charité University Medicine, Berlin, Germany.
²⁷ Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center, Reichman University Herzelia, Israel.
²⁸ Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Bonn, Germany; Department for Genomics & Immunoregulation, Life and Medical Sciences Institute (LIMES), University of Bonn, Bonn, Germany; PRECISE Platform for Single Cell Genomics and Epigenomics, DZNE und Universität Bonn, Bonn, Germany.
²⁹ Institute of Medical Immunology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin and Berlin Institute of Health (BIH), Berlin, Germany; Berlin Institute of Health at Charité-Universitätsmedizin Berlin, BIH Center for Regenerative Therapies (BCRT), Charitéplatz 1, Berlin, Germany; DZHK (German Center for Cardiovascular Research), Partner Site, 10785 Berlin, Germany.
³⁰ Department of Mathematics & Information Science, Warsaw University of Technology, Warsaw, Poland.; CEAUL - Centro de Estatística e Aplicações da Universidade de Lisboa, Lisbon, Portugal.
³¹ Department of Neurology, Zentrum Votivpark, Vienna, Austria.
³² Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
³³ Interdisciplinary Center of Sleep Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany.
³⁴ Institute of Biomedical Science, Department of Health Studies, FH, Joanneum University of Applied Sciences, Graz, Austria; Centro Integrativo de Biología y Química Aplicada (CIBQA), Universidad Bernardo O'Higgins, Santiago, Chile.
³⁵ Institute of General Pharmacology and Toxicology, University Hospital Frankfurt, Goethe-University, Frankfurt, Germany.
³⁶ Department of Sports Medicine, Charité-Universitätsmedizin Berlin, Humboldt University of Berlin, Germany.
³⁷ Department of Exercise Physiology and Functional Anatomy, Ludwik Rydygier Collegium Medicum in Bydgoszcz Nicolaus Copernicus University Toruń, Toruń, Poland; Department of Experimental and Clinical Physiology, Warsaw Medical University, Stefana Banacha 2a, Warszawa 02-097, Poland.
³⁸ Children's Hospital, School of Medicine, Technical University of Munich, Munich, Germany; German Center for Infection Research (DZIF), Berlin, Germany; AGV Research Unit Gene Vectors, Helmholtz Munich (HMGU), Munich, Germany.

PMID: 37742748
DOI: 10.1016/j.autrev.2023.103452

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating disease affecting millions of people worldwide. Due to the 2019 pandemic of coronavirus disease (COVID-19), we are facing a significant increase of ME/CFS prevalence. On May 11th to 12th, 2023, the second international ME/CFS conference of the Charité Fatigue Center was held in Berlin, Germany, focusing on pathomechanisms, diagnosis, and treatment. During the two-day conference, more than 100 researchers from various research fields met on-site and over 700 attendees participated online to discuss the state of the art and novel findings in this field. Key topics from the conference included: the role of the immune system, dysfunction of endothelial and autonomic nervous system, and viral reactivation. Furthermore, there were presentations on innovative diagnostic measures and assessments for this complex disease, cutting-edge treatment approaches, and clinical studies. Despite the increased public attention due to the COVID-19 pandemic, the subsequent rise of Long COVID-19 cases, and the rise of funding opportunities to unravel the pathomechanisms underlying ME/CFS, this severe disease remains highly underresearched. Future adequately funded research efforts are needed to further explore the disease etiology and to identify diagnostic markers and targeted therapies.

Keywords: Coronavirus disease 2019 (COVID-19); Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); Post-COVID fatigue (PCF); Post-COVID syndrome (PCS); Severe acute respiratory syndrome 2 (SARS-CoV-2).

Publication types

Review

MeSH terms

Fatigue Syndrome, Chronic* / diagnosis
Fatigue Syndrome, Chronic* / epidemiology
Fatigue Syndrome, Chronic* / therapy
Humans
Pandemics
Post-Acute COVID-19 Syndrome
Prevalence