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

Autoimmunity Reviews, vol. 22, pp. 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.

Authors 43

  1. Humboldt-Universität zu Berlin · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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. Humboldt-Universität zu Berlin · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

  3. Friederike Hoheisel corresponding

    Humboldt-Universität zu Berlin · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    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

  4. Affiliation as printed

    ME/CFS Research Foundation, Hamburg, Germany

  5. German Center for Neurodegenerative Diseases

    Affiliation as printed

    Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Bonn, Germany

  6. University Hospitals of the Ruhr-University of Bochum · Humboldt-Universität zu Berlin · Universitätsklinik Marien Hospital Herne · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin · Ruhr University Bochum

    Affiliation as printed

    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

    Berlin Institute of Health at Charité-Universitätsmedizin Berlin, BIH Center for Regenerative Therapies (BCRT), Charitéplatz 1, 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

    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

  7. Max Delbrück Center · Humboldt-Universität zu Berlin · NeuroCure Cluster of Excellence · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    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

  8. Humboldt-Universität zu Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Department of Neurology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany

  9. Haukeland University Hospital · University of Bergen

    Affiliation as printed

    Department of Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norway; Department of Clinical Sciences, University of Bergen, Bergen, Norway

    Department of Clinical Sciences, University of Bergen, Bergen, Norway

    Department of Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norway

  10. FernUniversität in Hagen

    Affiliation as printed

    Center of Advanced Technology for Assisted Learning and Predictive Analytics (CATALPA), FernUniversität in Hagen, Germany

  11. University of Liverpool · Walton Centre

    Affiliation as printed

    Pain Research Institute, Institute of Life Course and Medical Sciences, University of Liverpool, and Walton Centre NHS Foundation Trust, Liverpool, UK

  12. Affiliation as printed

    Psychotherapy and Psychoanalysis, Heidelberg, Germany

    Psychotherapy und Psychoanalysis, Heidelberg, Germany

  13. German Center for Pediatric and Adolescent Rheumatology

    Affiliation as printed

    Deutsches Zentrum für Kinder- und Jugendrheumatologie, Zentrum für Schmerztherapie junger Menschen, Garmisch-Partenkirchen, Germany

  14. Friedrich-Alexander-Universität Erlangen-Nürnberg · Universitätsklinikum Erlangen

    Affiliation as printed

    Department of Ophthalmology, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Germany

  15. DePaul University

    Affiliation as printed

    Center for Community Research, DePaul University, Chicago, IL, USA

  16. Brigham and Women's Hospital · Harvard University

    Affiliation as printed

    Division of General Medicine, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA

  17. London School of Hygiene & Tropical Medicine

    Affiliation as printed

    Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK

  18. Humboldt-Universität zu Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Department of Physical Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin, Berlin, Germany

  19. RWTH Aachen University

    Affiliation as printed

    Department of Neurology, Medical Faculty RWTH Aachen University, Aachen, Germany

  20. Haukeland University Hospital · University of Bergen

    Affiliation as printed

    Department of Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norway; Department of Clinical Sciences, University of Bergen, Bergen, Norway

    Department of Clinical Sciences, University of Bergen, Bergen, Norway

    Department of Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norway

  21. University of British Columbia · London School of Hygiene & Tropical Medicine · DIAKO · Women's Health Research Institute · B.C. Women's Hospital & Health Centre

    Affiliation as printed

    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

    Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK

    Department of Family Practice, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada

    Internal Medicine, Department of Nephrology, Diakonissenkrankenhaus, Flensburg, Germany

    Women's Health Research Institute, British Columbia Women's Hospital, Vancouver, BC, Canada

  22. Max Delbrück Center · Humboldt-Universität zu Berlin · NeuroCure Cluster of Excellence · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    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

    Interdisciplinary Center of Sleep Medicine, 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

  23. University of Würzburg

    Affiliation as printed

    Institute for Virology and Immunobiology, Julius-Maximilians University Würzburg, Würzburg, Germany

  24. Jena University Hospital · Center for Sepsis Control and Care · Friedrich Schiller University Jena · Charité - Universitätsmedizin Berlin · University of Lübeck

    Affiliation as printed

    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

    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

    Department of Rheumatology and Clinical Immunology, University of Lübeck, Lübeck, Germany

    Department of Sports Medicine and Health Promotion, Friedrich-Schiller-University Jena, Jena, Germany

    Interdisciplinary Center of Sleep Medicine, Charité -Universitätsmedizin Berlin, Berlin, Germany

  25. Medical University of Warsaw · German Center for Infection Research · Technical University of Munich · Charité - Universitätsmedizin Berlin · University of Lübeck

    Affiliation as printed

    Department of Rheumatology and Clinical Immunology, University of Lübeck, Lübeck, Germany

    Department of Experimental and Clinical Physiology, Warsaw Medical University, Stefana Banacha 2a, Warszawa 02-097, Poland

    German Center for Infection Research (DZIF), Berlin, Germany

    Interdisciplinary Center of Sleep Medicine, Charité -Universitätsmedizin Berlin, Berlin, Germany

    at Children's Hospital, School of Medicine, Technical University of Munich, Munich, Germany au

  26. DIAKO

    Affiliation as printed

    Internal Medicine, Department of Nephrology, Diakonissenkrankenhaus, Flensburg, Germany

  27. Johns Hopkins University · Johns Hopkins Medicine

    Affiliation as printed

    Department of Pediatrics, Division of Adolescent and Young Adult Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD, USA

  28. Universidad Bernardo O'Higgins · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Translational Immunology, Berlin Institute of Health (BIH) & Charité University Medicine, Berlin, Germany

    Centro Integrativo de Biología y Química Aplicada (CIBQA), Universidad Bernardo O'Higgins, Santiago, Chile

  29. Reichman University · Sheba Medical Center · DIAKO

    Affiliation as printed

    Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center, Reichman University Herzelia, Israel

    Internal Medicine, Department of Nephrology, Diakonissenkrankenhaus, Flensburg, Germany

  30. University of Bonn · German Center for Neurodegenerative Diseases · Nicolaus Copernicus University · Collegium Medicum in Bydgoszcz

    Affiliation as printed

    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

    Department for Genomics & Immunoregulation, Life and Medical Sciences Institute (LIMES), University of Bonn, Bonn, Germany

    Department of Exercise Physiology and Functional Anatomy, Ludwik Rydygier Collegium Medicum in Bydgoszcz Nicolaus Copernicus University Toruń, Toruń, Poland

    PRECISE Platform for Single Cell Genomics and Epigenomics, DZNE und Universität Bonn, Bonn, Germany

    Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Bonn, Germany

  31. Humboldt-Universität zu Berlin · German Centre for Cardiovascular Research · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    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

    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

  32. Warsaw University of Technology · University of Lisbon · Centro de Estatística e Aplicações · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Department of Mathematics & Information Science, Warsaw University of Technology, Warsaw, Poland.; CEAUL - Centro de Estatística e Aplicações da Universidade de Lisboa, Lisbon, Portugal

    CEAUL -Centro de Estatística e Aplicações da Universidade de Lisboa, Lisbon, Portugal

    Department of Mathematics & Information Science, Warsaw University of Technology, Warsaw, Poland

    Interdisciplinary Center of Sleep Medicine, Charité -Universitätsmedizin Berlin, Berlin, Germany

  33. Humboldt-Universität zu Berlin · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    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

  34. Haukeland University Hospital · Humboldt-Universität zu Berlin · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · University of Bergen · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    Department of Clinical Sciences, University of Bergen, Bergen, Norway

    Department of Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norway

  35. Affiliation as printed

    Department of Neurology, Zentrum Votivpark, Vienna, Austria

  36. Humboldt-Universität zu Berlin · University Medical Center Hamburg-Eppendorf · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Institute of Neuroimmunology and Multiple Sclerosis · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

    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

  37. Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Interdisciplinary Center of Sleep Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany

    Interdisciplinary Center of Sleep Medicine, Charité -Universitätsmedizin Berlin, Berlin, Germany

  38. FH JOANNEUM University of Applied Sciences · Universidad Bernardo O'Higgins · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    Centro Integrativo de Biología y Química Aplicada (CIBQA), Universidad Bernardo O'Higgins, Santiago, Chile

    Institute of Biomedical Science, Department of Health Studies, FH, Joanneum University of Applied Sciences, Graz, Austria

    Interdisciplinary Center of Sleep Medicine, Charité -Universitätsmedizin Berlin, Berlin, Germany

  39. Goethe University Frankfurt · University Hospital Frankfurt

    Affiliation as printed

    Institute of General Pharmacology and Toxicology, University Hospital Frankfurt, Goethe-University, Frankfurt, Germany

  40. Nicolaus Copernicus University · Humboldt-Universität zu Berlin · Universidad Bernardo O'Higgins · Collegium Medicum in Bydgoszcz · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Department of Sports Medicine, Charité-Universitätsmedizin Berlin, Humboldt University of Berlin, Germany

    Centro Integrativo de Biología y Química Aplicada (CIBQA), Universidad Bernardo O'Higgins, Santiago, Chile

    Department of Exercise Physiology and Functional Anatomy, Ludwik Rydygier Collegium Medicum in Bydgoszcz Nicolaus Copernicus University Toruń, Toruń, Poland

  41. Medical University of Warsaw · Nicolaus Copernicus University · German Center for Infection Research · Collegium Medicum in Bydgoszcz · Technical University of Munich

    Affiliation as printed

    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

    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

    Department of Neurology, Zentrum Votivpark, Vienna, Austria

    German Center for Infection Research (DZIF), Berlin, Germany

    at Children's Hospital, School of Medicine, Technical University of Munich, Munich, Germany au

  42. Helmholtz Munich · Nicolaus Copernicus University · German Center for Infection Research · Collegium Medicum in Bydgoszcz · Technical University of Munich

    Affiliation as printed

    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

    AGV Research Unit Gene Vectors, Helmholtz Munich (HMGU), Munich, Germany

    Department of Exercise Physiology and Functional Anatomy, Ludwik Rydygier Collegium Medicum in Bydgoszcz Nicolaus Copernicus University Toruń, Toruń, Poland

  43. Humboldt-Universität zu Berlin · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Freie Universität Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    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

    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

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References 88