Offener Brief zur Finanzierung biomedizinischer Forschung zu Myalgischer Enzephalomyelitis in der Europäischen Union

Myalgische Enzephalomyelitis (ME), auch Chronisches Fatigue Syndrom (CFS) genannt, ist eine schwere chronische Krankheit, die durch extreme pathologische Erschöpfung, kognitive Störungen und sogenannte Post-Exertional Malaise (Zustandsverschlechterung nach Anstrengung/Belastung) gekennzeichnet ist. [1] ME-Patienten sind häufig nicht in der Lage zu arbeiten, zu studieren oder an sozialen Aktivitäten teilzunehmen. Viele sind hausgebunden oder bettlägerig und vollständig auf die Pflege durch Familienangehörige angewiesen.
 
In den Vereinigten Staaten wird der durch ME verursachte direkte und indirekte wirtschaftliche Schaden auf 17 bis 24 Milliarden Dollar pro Jahr geschätzt. In der Europäischen Union, mit etwa zwei Millionen ME-Erkrankten, ist von noch größeren Folgen für die Gesellschaft auszugehen.
 
Trotz der hohen persönlichen sowie gesellschaftlichen Kosten war und ist ME ein vernachlässigter Bereich in der Medizin. Es gibt derzeit keine erfolgversprechende Behandlung, die Prognose ist schlecht und viele Patienten bleiben jahrzehntelang krank. Obwohl die medizinische Forschung Fortschritte macht, ist die Pathologie der Krankheit noch sehr wenig verstanden.
 
Angesichts der hohen Krankheitslast ist eine deutliche Erhöhung der Mittel für die biomedizinische ME-Forschung dringend erforderlich. Mit diesem Brief fordern wir die EU auf, über geeignete Regelungen im Horizon Europe Programm eine verbesserte Förderung der Forschung zu vernachlässigten chronischen Krankheiten wie ME sicherzustellen.
 
In den USA, Australien und Kanada haben die Regierungen eigene Mittel für die ME-Forschung bereitgestellt; eine Strategie, die neue Wissenschaftler anzieht und hilft, das Gebiet weiterzuentwickeln. Medizinische Forschung zu ME findet an renommierten Instituten statt, so zum Beispiel in Stanford, Cornell und an der Columbia University. Auch an den mit Harvard verbundenen Krankenhäusern wurde vor kurzem eine neue ME-Forschungskooperation etabliert. Das vordringliche Ziel ist die Entwicklung eines diagnostischen Tests, um die Genauigkeit  der Diagnose zu erhöhen und zuverlässige Ergebnisse in Behandlungsstudien sicherzustellen.
 
Leider hinkt Europa in der ME-Forschung hinterher. In der Tat finanziert die EU – ein globaler Vorreiter im Gesundheitswesen und in der medizinischen Forschung – derzeit fast gar keine Forschung zu ME. Die wenigen in Europa angesiedelten Forschungsprojekte werden oft von Selbsthilfeorganisationen, Patienten und ihren Angehörigen finanziert.
 
Wir fordern, dass die EU sich den internationalen Entwicklungen anschließt und sich langfristig verpflichtet, in die biomedizinische ME-Forschung zu investieren. Eine Maßgabe im Horizon Europe Forschungsprogramm zur Bekämpfung vernachlässigter chronischer Krankheiten würde eine wesentliche Hürde für die europäische Forschung zu ME beseitigen. Nur so wird es möglich sein, zu einem besseren Verständnis dieser verheerenden Krankheit zu kommen und schließlich zu einer wirksamen Behandlung.
 
[1] Institute of Medicine (IOM). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press; 2015. https://www.ncbi.nlm.nih.gov/books/NBK274235/pdf/Bookshelf_NBK274235.pdf

Erstunterzeichner:

Jonas Bergquist, MD, PhD

Professor in Analytical Chemistry and Neurochemistry at the Department of Chemistry Biomedical Center, Analytical Chemistry

Uppsala University 

Uppsala, Sweden

Member of EUROMENE

Dr. Eliana M. Lacerda

Clinical Assistant Professor

CureME team

Disability & Eye Health Group

Department of Clinical Research

London School of Hygiene & Tropical Medicine 

London, UK

Vice-Chair of EUROMENE (European Network on ME/CFS, COST Action 15111)

Dr. Luis Nacul

Clinical Associate Professor

London School of Hygiene and Tropical Medicine 

London, UK

and

Medical Director and Research Director for Complex Chronic Diseases Program

BC Women's Hospital

Vancouver, Canada

Prof. Dr. med. Carmen Scheibenbogen

Institut für Med. Immunologie

Charité Berlin 

Berlin, Germany 

Europa (EU):

Prof. Aldo Baritussio

Specialist in Cardiology and Hematology

former Associate Professor in Respiratory Pathophysiology

University of Padua 

Padua, Italy

Prof. Dr. med. Uta Behrends

Klinik für Kinder- und Jugendmedizin

Klinikum rechts der Isar

Technische Universität München

München, Germany

Dr. Julià Blanco

Senior Researcher, Cell Virology and Immunology

AIDS Research Institute IrsiCaixa, Institute Germans Trias I Pujol (IGTP)

Badalona, Catalonia, Spain

Elenka Brenna, MsC, PhD

Adjunct Professor, Health Economics

Department of Economics and Finance

Università Cattolica of Milan

and 

Senior Research Fellow

Department of Economics and Management

University of Pavia

Petter Brodin, MD, PhD

Associate Professor, Immunology

Department of Women’s and Children’s Health 

Karolinska Institute

and

Consultant, pediatric immunology

Karolinska University Hospital 

Stockholm, Sweden

Magdalena Budisteanu, MD, PhD

Associate Professor

Head of Psychiatry Research Laboratory 

"Prof. Dr. Alexandru Obregia" Clinical Hospital of Psychiatry 

Bucharest, Romania

Prof. Enrica Capelli

Head of Laboratory of Immunology and Genetic Analyses

Dept of Earth and Environmental Sciences and Centre for Health Technologies

University of Pavia

Pavia, Italy

Dr. John Cullinan

Senior Lecturer in Economics 

National University of Ireland Galway

Galway, Ireland

Fernando Estévez-López, PhD

Marie Skłodowska-Curie Postdoctoral Fellow 

Generation R study

Erasmus University Medical Center 

Rotterdam, the Netherlands

Prof. Øystein Fluge

Dept. of Oncology and Medical Physics

Haukeland University Hospital

Bergen, Norway

Dr. rer. medic. Helma Freitag

Postdoctoral Researcher

Institut für Medizinische Immunologie

Charité - Universitätsmedizin Berlin

Berlin, Germany

Lara Gitto, MSc PhD

Associate Professor of Political Economics

Department of Economics

Università degli Studi di Messina

Messina, Italy

Carl-Gerhard Gottfries 

Professor Emeritus 

University of Gothenburg

Gothenburg, Sweden

PD Dr. med. Patricia Grabowski

FÄ für Innere Medizin m. S. Hämato-Onkologie, Palliativmedizin

Charité Campus Virchow Klinikum, CC12

Institut für Medizinische Immunologie

Charité - Universitätsmedizin Berlin

Berlin, Germany

Prof. Dr. Thomas Harrer, MD

Associate Professor

Infectious Diseases and Immunodeficiency

Department for Internal Medicine III

University Hospital Erlangen

Friedrich-Alexander-University of Erlangen-Nuremberg

Erlangen, Germany

Brian M. Hughes, PhD, FPsSI

Professor of Psychology

School of Psychology

National University of Ireland, Galway

Galway, Ireland

Dr. Mieke Hulens, MD, PhD

Physical Medicine, EMG

Sint-Joris-Weert

Research Fellow

Musculoskeletal Rehabilitation Research Unit

Department of Rehabilitation Sciences

Faculty of Kinesiology and Rehabilitation Sciences

University of Leuven

Leuven, Belgium

Michael Falk Hvidberg, PhD

Associated researcher

Department of Health Science and Technology

The Faculty of Medicine

Aalborg University

Denmark

Andrejs Ivanovs, PhD,

Assistant Professor

Head of Statistics Unit, Faculty of Medicine

Riga Stradins University

Riga, Latvia

Prof. Yves Jammes, MD, DSci

Professor Emeritus

UMR 1263 C2VN Inra Inserm Faculty of Medicine

Aix Marseille University 

Marseille, France

Olav Mella

Department director/professor

Dept. of Oncology and Medical Physics

Haukeland University Hospital

Bergen, Norway

Prof. Modra Murovska, MD, PhD

Director of the Institute of Microbiology and Virology

Full Member Latvian Academy of Sciences

Chair of CA15111 “European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (EUROMENE)

Rīga Stradiņš University

Riga, Latvia

Henrik Nielsen, MD, DMSc

Chief Doctor

Privat Hospitalet Denmark

Dr. med. Zaiga Nora-Krukle

Leading Researcher

Institute of Microbiology and Virology

Rīga Stradiņš University

Riga, Latvia

Elisa Oltra, PhD

Professor in Cell and Molecular Biology

Universidad Católica de Valencia San Vicente Mártir

Valencia, Spain

Svetlana Orlova, PhD

Assistant Professor

Laboratory of influenza and influenza-like illnesses

Republican Research and Practical Center for Epidemiology and Microbiology

Minsk, Republic of Belarus

Bruno Paiva, PhD

Cytometry Platform Director of the Center for applied medical research (Cima)

University of Navarra 

Pamplona, Spain

Dr. Bhupesh K. Prusty

Senior Researcher

Institute for Virology and Immunobiology

Julius-Maximilians-Universität Würzburg

Würzburg, Germany

Dr. Frédérique Retornaz, MD, PhD

Head of Internal Medicine Department

European Hospital Marseille

Marseille, France

Monika Riederer, PhD

Associate Professor

FH JOANNEUM Graz

Austria

Anders Rosén, PhD

Professor Emeritus

Linköping University

Sweden

Dr. Giorgos K. Sakkas, PhD

Associate Professor in Clinical Exercise Physiology

Live Laboratory

School of PE, Sport Sciences & Dietetics

University of Thessaly

Karies, Thessaly, Greece 

and

Professor in Lifestyle Medicine

School of Sport and Health Sciences

Cardiff Metropolitan University

Cardiff, Wales, UK

Associate Editor in BMC Nephrology and BMC Research Note

Nuno Henriques dos Santos de Sepúlveda, PhD

Assistant Professor

Centre of Statistics and its Application

University of Lisbon

Lisbon, Portugal

and

Charité – Universitätsmedizin Berlin

Berlin, Germany

Ola Didrik Saugstad, MD, PhD

Professor of Pediatrics 

University of Oslo

Oslo, Norway

Evelina Shikova

Associate Professor

Specialized Hospital for Active Treatment in Haematological Diseases

Sofia, Bulgaria

Prof. Dr. Umberto Tirelli 

National Cancer Institute 

Aviano (PN), Italy

and

Medical Director of Tumor, Chronic Fatigue, Fibromyalgia and O2/O3 Therapy

Tirelli Medical Group Clinic 

Pordenone, Italy 

Prof. Karl Johan Tronstad, PhD

Department of Biomedicine

University of Bergen

Bergen, Norway

Prof. Dr. Christine Van Broeckhoven PhD DSC

Head of the Neurodegenerative Brain Diseases Group

VIB Center for Molecular Neurology

University of Antwerp

Antwerp, Belgium

Francisco Westermeier, PhD

Institute of Biomedical Science

FH | JOANNEUM University of Applied Sciences

Graz, Austria

Großbritannien:

David Andersson, PhD

Senior Lecturer in Physiology

Wolfson CARD

Guy's Campus

King’s College London

London, UK

Prof. Philip James Atherton, PhD, AFHEA

Chair of Clinical, Metabolic & Molecular Physiology

MRC-ARUK Centre of Research Excellence

NIHR Biomedical Research Centre

The University of Nottingham

Faculty of Medicine & Health Sciences

School of Medicine

Medical School

Royal Derby Hospital, UK

Prof. Stuart Bevan

Wolfson Centre for Age Related Diseases

King’s College London

London, UK 

Prof. Jo (Geraldine) Cambridge, PhD  

Professorial Research Fellow

Division of Rheumatology

Department of Medicine

University College London

London, UK

Dr. Jackie Cliff

Associate Professor

Department of Infection Biology

Faculty of Infectious and Tropical Diseases

London School of Hygiene & Tropical Medicine 

London, UK

Dr. Joanna L. Elson

Newcastle University Biosciences Institute

Newcastle University

International Centre for Life

Newcastle upon Tyne, UK 

Keith Geraghty, MPH, PhD

Honorary Research Fellow

Division of Population Health, Health Services Research & Primary Care

School of Health Sciences

University of Manchester

Manchester, UK

Professor Paul Greenhaff

Metabolic and Molecular Physiology,

MRC Versus Arthritis Centre for Musculoskeletal Ageing Research,

Centre for Sport, Exercise and Osteoarthritis Research Versus Arthritis,

National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre,

Division of Physiology, Pharmacology and Neuroscience,

The Medical School,

University of Nottingham,

Nottingham, UK

Neil Harrison, MBBS, PhD, MRCP, MRCPsych

Clinical Professor in Neuroimaging

Lead for Clinical and Translational Imaging Research

Cardiff University Brain Research Imaging Centre (CUBRIC)

Division of Psychological Medicine and Clinical Sciences

Cardiff University

Cardiff, UK

Prof. Stephen T. Holgate

MRC Professor of Immunopharmacology

Faculty of Medicine 

University of Southampton

Southampton, UK

Caroline Kingdon

Research Fellow

London School of Hygiene and Tropical Medicine, UK

Dr. Karl Morten, PhD

Director of graduate studies and Principle Investigator. 

University of Oxford

Oxford, UK

Kathleen Mudie

Research Fellow in Epidemiology

CureME Research Group

ME/CFS Biobank Project

ITD/CRD/Disability & Eye Health Group

London School of Hygiene & Tropical Medicine

London, UK

Prof. Derek Pheby

Visiting Professor of Epidemiology (retired)

Buckinghamshire New University

High Wycombe, UK.

Prof. Chris Ponting

Edinburgh, UK

Jonathan Kerr, BSc, MBBCh, MD, PhD, FRCPath

Consultant Microbiologist,

Norfolk & Norwich University Hospital, UK

Nordamerika:

Dharam V. Ablashi, DVM, MS, Dip Bact, D.Sc (Hon)

Scientific Director, HHV-6 Foundation

Formerly-Adjunct Professor-Microbiology, Georgetown University - 

School of Medicine-Washington DC

Formerly-Senior Investigator-National Cancer Institute/NIH-Bethesda MD

Director of Human Herpesvirus Programs - Advanced Biotechnologies, Inc.

Co-founder - International House, Providence RI

Co-founder - International EBV Association

Co-founder - International Association for CFS/ME

Armin Alaedini, PhD

Asst. Professor, Department of Medicine & Institute of Human Nutrition

Columbia University Medical Center

New York City, NY, USA

Christopher W. Armstrong, PhD

Visiting Scholar at Stanford University

Science Liaison at Open Medicine Foundation

James N. Baraniuk, MD

Professor of Medicine

Georgetown University

Washington DC, USA

Lucinda Bateman, MS, MD

Medical Director

Bateman Horne Center

Salt Lake City, Utah, USA

Alison C. Bested, MD FRCPC

Diplomate, American Board of Integrative Medicine

Chair, Integrative Medicine

Director, Student Research Development

Clinical Director, Institute for Neuro-Immune Medicine

Associate Professor

Dr. Kiran C. Patel College of Osteopathic Medicine

Center for Collaborative Research

Institute for Neuro-Immune Medicine

Nova Southeastern University

Hector Fabio Bonilla, MD

Assistant Professor of Medicine

Division of Infectious Diseases

ME/CFS Collaborative Research Center

Stanford University

Stanford, CA, USA.

Gordon Broderick, PhD

Director, Centre for Clinical Systems Biology 

Rochester General Hospital

Associate Professor, Dept. of Biomedical Engineering Rochester Institute of Technology

Rochester, NY, USA

Mario R. Capecchi

Distinguished Professor

University of Utah School of Medicine

Salt Lake City, UT, United States

Lily Chu, MD, MSHS

Independent Consultant,

Burlingame, CA, USA

Todd E. Davenport, PT, DPT, MPH, OCS

Professor & Program Director

Thomas J. Long School of Pharmacy & Health Sciences

Department of Physical Therapy

University of the Pacific

Stockton, CA, USA

Ronald W. Davis, PhD

Professor of Biochemistry and of Genetics

Director, Stanford Genome Technology Center

Director, ME/CFS Collaborative Research Center at Stanford

Director, Open Medicine Foundation Scientific Advisory Board

Stanford University

Stanford, CA, USA

Fred Friedberg, PhD

Research Associate Professor

Division of Medicine, Stony Brook University Medical Center 

Stony Brook NY, USA.

Kenneth J. Friedman, PhD

Retired, Associate Professor of Pharmacology & Physiology

New Jersey Medical School

Newark, NJ, USA

Editor, Advances In ME/CFS Research & Clinical Care, Frontiers In Pediatrics, 2019

Susan Levine, MD

Clinician, Private Practice

New York, New York

Visiting Fellow, Cornell University

Ithaca, NY, USA

Patrick O. McGowan, PhD

Associate Professor

Departments of Biological Sciences,

Cell and Systems Biology, Psychology, Physiology

University of Toronto 

Toronto, Canada

Maureen R. Hanson

Liberty Hyde Bailey Professor

Director, Center for Enervating Neuroimmune Disease

Cornell University

Ithaca, NY, USA

Mady Hornig, MA, MD

Associate Professor of Epidemiology

Mailman School of Public Health

Columbia University

New York City, NY, USA

Leonard A. Jason, PhD

Professor of Psychology

Director, Center for Community Research

DePaul University

Chicago, IL, USA

Betsy Keller, PhD

Professor, Ithaca College

Visiting Professor, Cornell University

Co-director, Clinical Core, NIH Collaborative Research Center at Cornell UniversityIthaca, NY, USA

Nancy Klimas, MD

Professor and Chair, Department of Clinical Immunology

Director, Institute for Neuro-Immune Medicine

Assistant Dean for Research

Dr. Kiran C. Patel College of Osteopathic Medicine

Nova Southeastern University

Ft. Lauderdale, FL, USA

Anthony L. Komaroff, MD

Simcox-Clifford-Higby Distinguished Professor of Medicine

Senior Physician, Brigham and Women’s Hospital

Harvard Medical School

Boston, MA, USA

Amir Landi, MD PhD

Senior Scientist

Li Ka Shing Applied Virology Institute

University of Alberta

Edmonton, AB, Canada

Bruce Levin, Ph.D.

Professor Emeritus of Biostatistics

Past Chair, Department of Biostatistics

Columbia University

Mailman School of Public Health

New York, NY, USA

Dawei Li, PhD

Assistant Professor

Department of Microbiology and Molecular Genetics

Neuroscience, Behavior, and Health Initiative

University of Vermont

Burlington, VT, USA

Alan R. Light, PhD

Depts. of Anesthesiology and Neurobiology and Anatomy

University of Utah

Salt Lake City, UT, USA

Marvin S. Medow, PhD

Professor of Pediatrics and Physiology

New York Medical College

Chairman, New York Medical College IRB

Associate Director of The Center for Hypotension

Hawthorne, NY, USA

Alain Moreau, PhD

Full Professor

Department of Stomatology, Faculty of Dentistry

Department of Biochemistry and Molecular Medicine, Faculty of Medicine

Université de Montréal

and

Director / Directeur

Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network

Réseau Canadien de Recherche Concertée Interdisciplinaire sur l’Encéphalomyélite Myalgique

and

Scientific Director

Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases

Sainte-Justine University Hospital Research Center

Montreal, Canada

Benjamin H. Natelson, MD

Director, Pain & Fatigue Study Center

Professor of Neurology

Icahn School of Medicine at Mount Sinai

New York City, NY, USA

Faith Newton, EdD

Professor of Education

ME/CFS Education Initiative

Delaware State University

Dover, DE, USA

Robert D. Phair, PhD 

Chief Science Officer  |  Integrative Bioinformatics Inc

Mountain View, CA, USA

Anand Ramasubramanian, PhD

Professor, Chemical Engineering

San José State University

San José, CA, USA

Peter C. Rowe, MD

Professor of Pediatrics

Johns Hopkins University School of Medicine

Baltimore, MD, USA

Lars M. Steinmetz, PhD 

Senior Scientist and Director Life Science Alliance, 

European Molecular Biology Laboratory (EMBL) 

Heidelberg, Germany

and 

Professor of Genetics

Co-Director, Stanford Genome Technology Center 

Director, Graduate Admissions, Department of Genetics

Stanford University School of Medicine 

Stanford, CA, USA

Staci R. Stevens, MA

Founder, Exercise Physiologist

Workwell Foundation 

Ripon, CA, USA

David M Systrom, MD

Asst. Professor, Harvard Medical School

Associate Physician, Brigham and Women’s Hospital

Boston, MA, USA

Ronald G. Tompkins, MD, ScD

Sumner Redstone Professor of Surgery

Harvard Medical School

Massachusetts General Hospital

Boston, MA, USA

Derya Unutmaz, MD

Professor

The Jackson Laboratory for Genomic Medicine

Farmington, CT, USA

Michael B. VanElzakker, PhD

Research Fellow

Harvard Medical School

Massachusetts General Hospital

Boston, MA, USA

J. Mark VanNess, Ph.D.

Professor – Health and Exercise Science

Research Director – WorkWell Foundation

University of the Pacific

Stockton, CA, USA

Mark Zinn, PhD

Founder, Director

The NeuroCognitive Research Institute, Inc.

Chicago, IL, USA

Australien & Neuseeland:

Leighton Barnden, PhD

Imaging Consultant

National Centre for Neuroimmunolgy and Emerging Diseases,

Menzies Health Institute Queensland, 

Griffith University

Gold Coast, QLD, Australia

Dr. Helene Cabanas

Post Doctoral Research Fellow, 

National Centre for Neuroimmunology and Emerging Diseases 

Griffith University

Queensland, Australia

Prof. Paul R. Fisher,

Professor of Microbiology,

Department of Physiology Anatomy and Microbiology,

La Trobe University,

Melbourne, Australia

Lynette Hodges, PhD  

Senior Lecturer in Sport and Exercise,

School of Sport, Exercise and Nutrition,

College of Health,

Massey University

New Zealand

Brett A. Lidbury, PhD, FFSc (RCPA)

Associate Professor,

The National Centre for Epidemiology and Population Health, RSPH,

College of Health and Medicine,

The Australian National University 

Canberra, Australia

Angus Mackay MA(Ed) BSc

PhD Student

Biochemistry Dept

University of Otago

Dunedin, New Zealand

Prof. Sonya Marshall-Gradisnik

Co-Director National Centre for Neuroimmunology and Emerging Diseases

Griffith University

Queensland, Australia

Neil R. McGregor, BDS, MDSc, PhD

Clin. Assoc. Prof. (Melb), Adj. Prof. (VU)

Faculty of Medicine Dentistry and Health Sciences

University of Melbourne 

Carlton, Victoria, Australia

Dr. Katherine Rowe

CFS Service

Department of General Medicine

Royal Children’s Hospital 

Parkville, Victoria, Australia

Zack Shan

Senior Research Fellow

Sunshine Coast Mind and Neuroscience - Thompson Institute (SCMNTI)

University of the Sunshine Coast

Queensland, Australia

Prof. Donald R. Staines

Co-Director National Centre for Neuroimmunology and Emerging Diseases

Menzies Health Institute of Queensland

Griffith University

Queensland, Australia

Prof. Warren Tate, PhD,  FRSNZ, CNZM

Professor of Biochemistry 

University of Otago

Dunedin, New Zealand

Prof. Tony Ward, PhD, DipClinPsyc (Canty), FRSNZ

School of Psychology, 

Victoria University of Wellington

Wellington, New Zealand

Carolyn Wilshire, PhD

Senior Lecturer

School of Psychology

Victoria University of Wellington

Wellington, New Zealand