Joint Statement from Healthcare and Academia
In Support of a Differentiated, Respectful, and Factually Appropriate Approach to People with ME/CFS
In our medical, psychotherapeutic, and/or scientific work, we regularly encounter people with ME/CFS who are living in an exceptionally challenging situation. Most are severely restricted by their illness in their independence, social participation, and ability to pursue their professional and private lives. At the same time, only limited therapeutic options are currently available. Adequate healthcare structures are still largely lacking, and all too often people affected by the disease are, in practical terms, left to cope with their severe illness largely on their own by our healthcare system.
Against this background in particular, in our clinical and/or scientific work we frequently experience a high degree of gratitude and appreciation from people with ME/CFS for reliable support, careful diagnostic assessment, and an approach that fully recognizes and takes into account their individual limits of exertion as well as the often devastating extent of the limitations caused by their illness. Many people affected also have a strong interest in professional and scientific matters. They closely follow developments in research, engage thoughtfully with new findings, and often themselves devote what little energy they have left to improving healthcare, public awareness, and research.
Our shared experience is that the vast majority of people affected approach medical, therapeutic, and scientific questions in a constructive, reflective, and solution-oriented manner. Many contribute their own experiences in ways that provide important additional insights for healthcare and research. As medical and psychotherapeutic practitioners or scientists, we can benefit from this wealth of experience. Particularly in view of an illness that remains insufficiently understood and the existing deficiencies in healthcare provision, the perspective of those affected can be of considerable value.
As in any other patient population, there may of course occasionally be difficult or conflictual encounters involving people with ME/CFS. In our experience, however, such situations are neither characteristic of this patient population nor more frequent than in other medical contexts. Individual negative experiences must therefore never be generalized or used as the basis for attributing particular characteristics to an entire group.
Against this background, we are particularly concerned by portrayals that characterize people with ME/CFS as having a “combative and accusatory tone,” emphasize “aggressiveness” among affected individuals as a characteristic problem, or otherwise frame this patient population as generally “difficult.” Such sweeping statements turn individual negative experiences into a purported distinctive feature of this patient population, even though our experience in clinical practice and research provides no basis for such a characterization. Such portrayals can foster unwarranted mistrust of people with the disease, encourage the premature psychologization of physical symptoms, and contribute to medical concerns not being assessed without prejudice. In this way, they further impede the already inadequate healthcare available to people with ME/CFS.
We therefore strongly advocate for differentiated, respectful, and factually appropriate language, as well as a corresponding attitude toward this patient population. Both are essential prerequisites for trusting and effective healthcare and for constructive scientific collaboration.
The undersigned listed below support this statement in their personal capacity. Information regarding their professional roles and institutional affiliations is provided solely for professional context; it does not imply endorsement of the statement by the institutions named.
Dr. med. Christoph Bammer
Specialist in Internal Medicine and Nephrology; PAIS Clinic, BKH Kufstein.
Dr. med. Michaela Bauer
Specialist in Psychiatry and Psychotherapy (FMH); private practice, Bern.
Dr. med. Judith Bellmann-Strobl
Specialist in Neurology; Head of PAIS/Post-COVID Clinic; Senior Physician, Neuroimmunology Outpatient Clinic, Experimental and Clinical Research Center (ECRC), Charité – Universitätsmedizin Berlin and Max Delbrück Center for Molecular Medicine (MDC).
Dr. med. Anna Brock
Specialist in Internal Medicine; PAIS Practice Brock, Erbach; Charité Fatigue Center, Charité – Universitätsmedizin Berlin.
Ronja Büchner, M.Sc.
Psychologist and Research Associate; Faculty of Medicine, Leipzig University.
Dr. med. Monika Dräger
Physician, lecturer, and author specializing in ME/CFS, Long COVID, and PAIS; Dr. Lindner Medical Practice, Berlin.
PD Dr. rer. nat. Laura Froehlich
Acting Professor of Social Psychology; Faculty of Psychology, FernUniversität in Hagen.
Prof. Dr. med. Patrick Gerner
Specialist in Pediatrics and Adolescent Medicine; Chief Physician, Department of Pediatrics and Adolescent Medicine; Ortenau Klinikum Offenburg.
Dr. med. Christian Gogoll
Specialist in Internal Medicine and Pulmonology; Head of the Long COVID Network of the Association of Statutory Health Insurance Physicians (KV) Berlin; Lungen-MVZ Weißensee, Johannesstift Diakonie, Berlin.
Dipl.-Psych. Bettina Grande
Psychological Psychotherapist; Charité – Universitätsmedizin Berlin; Board Member, Psychotherapie-Netzwerk ME/CFS e.V.
Dr. Dipl.-Psych. Tilman Grande
Psychological Psychotherapist; Charité – Universitätsmedizin Berlin; Board Member, Psychotherapie-Netzwerk ME/CFS e.V.
Dr. med. Isabelle Greber
Physician in private practice, Dr. Isabelle Greber Medical Practice, Boppard-Buchholz.
Dr. med. Lotte Habermann-Horstmeier, MPH, MSc
Director, Villingen Institute of Public Health, Villingen-Schwenningen.
Univ.-Prof. Dr. med. Kathryn Hoffmann, MPH
Head of the Department of Primary Care Medicine, Center for Public Health; Medical University of Vienna.
Prof. Dr. med. Dr. phil. Martina King
Full Professor of Medical Humanities; Faculty of Science and Medicine, University of Fribourg/Switzerland.
Prof. Dr. rer. soc. Eva-Maria Klinkisch
Catholic University of Applied Sciences Freiburg.
Prof. Dr. Vivienne Matthies-Boon
Head of the Department of Ethics and Political Philosophy; Radboud University, Nijmegen.
Dr. med. Julia Möbius
Specialist in Internal Medicine; Diamedikum, Potsdam.
Prof. Dr. Bhupesh K. Prusty
Associate Professor, Institute of Microbiology and Virology, Rīga Stradiņš University, Riga.
Dr. med. Herbert Renz-Polster
Specialist in Pediatrics and Adolescent Medicine, Vogt.
Dr. med. Wolfgang Ries
Specialist in Internal Medicine, Nephrology, Angiology, and Internal Intensive Care Medicine; Dr. Wolfgang Ries Medical Practice, Handewitt.
Dr. med. Claudia Schilling
Specialist in Psychiatry and Psychotherapy; Specialist in Neurology; Sleep Medicine; Department of Psychiatry and Psychotherapy, Central Institute of Mental Health, Mannheim.
Prof. Dr. med. Georg Schomerus
Specialist in Psychiatry and Psychotherapy; Director, Department and Outpatient Department of Psychiatry and Psychotherapy, Leipzig University Hospital.
Ann-Kristin Specht, M.A.
Sociologist; Weber-Bartz-Papendieck Group Practice, Long-/Post-COVID Anchor Center Rhineland-Palatinate, Koblenz.
Univ.-Prof. Dr. med. Dr. h.c. Jürgen Michael Steinacker
Specialist in Internal Medicine, Cardiology, Sports Medicine, and Rehabilitation Medicine; Institute for Rehabilitation Medicine Research, Ulm University.
Dr. med. Michael Stingl
Specialist in Neurology, CerePrax – Practice for Neurology & Psychology, Vienna.
Dr. med. Maja Strasser
Specialist in Neurology, Neurology Practice, Solothurn.
Jesko Streeck
Diploma-qualified Physiotherapist, lecturer, and professional textbook author; Osteofit Practice, Alzey.
Dipl.-Sozialpäd. Philipp Theis
Child and Adolescent Psychotherapist; Munich Chronic Fatigue Center for Young People (MCFC), TUM University Hospital Rechts der Isar, Munich.
Dr. med. Astrid Weber
Specialist in Internal Medicine and Psychotherapy; Weber-Bartz-PapendieckGroup Practice, Long/Post-COVID AnchorCenter Rhineland-Palatinate, Koblenz.
Dr. med. Andreas Weiß
Specialist in Anesthesiology and Emergency Medicine, Oberreute.
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