Author: Dutch Citizens’ Initiative “Recognize ME” (Group ME-TheHague).

More than 75 international scientists, clinicians and other professionals have written a strong letter to the Dutch Minister of Health and the Dutch Health Committee of Parliament in the Netherlands to state that ME is a serious chronic multi-system disease that is not psychological or psychosomatic in nature. (See the letter below)

The letter comes on the heels of the Dutch Health Council releasing its advisory report on ME/CFS on March 19th, 2018.

The Dutch Health Council report was a direct result of seven years of advocacy work by a Dutch Citizens’ Initiative (Group ME-The Hague). A group of 10 severely ill ME patients started a petition “Recognize ME” in 2011. Their goal: recognition of this (neurological) disease recognized by the WHO since 1969 (ICD-10 G93.3). The ME-The Hague Group sounded the alarm because adequate diagnosis, knowledge, care and investment in biomedical research in the Netherlands has been completely lacking for decades. (Our previous reporting on the content of the report can be found here.)

It took two years to collect over 56,000 signatures. After several meetings with parliament finally, in 2015, with a unanimous vote, the entire House of Representatives asked the Dutch Health Council (which is their official advisory body) to write an advisory report about the current state of science regarding ME. A committee was installed in March 2016. And now, two years later, after receiving the advisory report, the Dutch Health Committee of Parliament has asked the Minister of Health for a response about its content and recommendations. While awaiting that response, more than 70 international scientists, clinicians and other professionals have written a strong letter to the Dutch Minister of Health and the Health Committee, which was sent with an accompanying letter to both the Minister of Health and Parliament’s Health Committee by the Dutch Citizens’ Initiative.

The letter clearly states what this disease is, but also what it is not. “Patients are suffering from a real and physical disease for which there is currently no cure. It is not a psychological or psychosomatic disease.” The authors warn against “falsely equating it with (chronic or unexplained) fatigue, or psychosomatic classifications (like medically unexplained symptoms, somatoform disorders, somatic symptom disorder, functional somatic syndrome, neurasthenia, bodily distress disorder/syndrome).”

It is important to stress that after a Dutch Health Council report in 2005, all the money provided by the Dutch Minister of Health at that time went to behavioral intervention research (CBT/GET) and guideline development (based on NICE 2007 guideline), no investment was made in biomedical research. Dutch Health Care for ME patients has been based for decades now on an unproven cognitive behavioral model/hypothesis. In their letter, the authors clearly state that treatments based on that paradigm, like CBT/GET “have produced no robust evidence in the past 2 decades, as the AHRQ systematic literature review (addendum) and reanalysis of the largest ever study on CBT/GET (PACE trial) have shown.”

The authors therefore urge the Dutch Government to invest in a substantial and long-term funding of biomedical research, as it is “the only way to create better insights into the physiological mechanisms of this debilitating disease, and create much needed biomarkers for diagnosis, so that we can get closer to providing better care (based on the biomedical nature of the disease and the care needs of patients) and effective treatments or a cure in the future.”

Letter sent to Dutch Minister of Health and Parliament’s Health Committee by more than 70 international scientists, clinicians and other professionals:

To: Dutch Minister of Health (Minister van VWS), Mr. Drs. Bruno Bruins

Cc: Members of the Health Committee (vaste Tweede Kamer commissie VWS) of Dutch Parliament

The Dutch Health Council, in its report on ME/CFS, published on March 19th 2018, drastically changes its conclusions compared to its previous 2005 report. What was reported in 2005 does no longer align with the state of the international scientific knowledge about Myalgic Encephalomyelitis (ME). Based on the scientific evidence reviewed, the Dutch Health Council now concludes (as did the Institute of Medicine (IOM, 2015 report) and Centers for Disease Control (CDC) and National Institutes of Health (NIH) that ME (called ME/CFS in the report) is a serious chronic multisystem disease that substantially limits the activities and quality of life of patients.

Patients are suffering from a real and physical disease for which there is currently no cure. It is not a psychological or psychosomatic disease. Post-exertional malaise, a worsening of symptoms after minimal physical or mental exertion, is characteristic of the disease. There is strong scientific evidence of neurological/autonomic dysfunction, immunologic and inflammatory pathologies, microbiome perturbation, metabolic or mitochondrial abnormalities (and more) in patients.

Patients for decades now have been prescribed treatments like Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET), based on the idea that they suffer from “false illness beliefs”, fear of exercise or that they are deconditioned. That “perpetuating” factors (beliefs/behavior) need to be addressed to improve or even be cured. The treatments based on that hypothesis (CBT/GET), have produced no robust evidence in the past 2 decades, as the AHRQ systematic literature review (addendum) and reanalysis of the largest ever study on CBT/GET (PACE trial) have shown. The CDC has recently removed its recommendations for CBT and GET from its website. Furthermore, patients internationally for more than 20 years have continually reported deterioration from following the advice of their doctors to gradually increase their exertion levels based on a GET protocol (which in the Netherlands is almost always a standard part of CBT as well).

There is international consensus that funding biomedical research is the only way to create better insights into the physiological mechanisms of this debilitating disease, and create much needed biomarkers for diagnosis, so that we can get closer to providing better care (based on the biomedical nature of the disease and the care needs of patients) and effective treatments or a cure in the future. Also, there is a need to change the narrative so this disease will not be misdiagnosed or stigmatised by falsely equating it with (chronic or unexplained) fatigue, or psychosomatic classifications (like medically unexplained symptoms, somatoform disorders, somatic symptom disorder, functional somatic syndrome, neurasthenia, bodily distress disorder/syndrome).

We would urge the Dutch Government to follow the recommendations of the Dutch Health Council report (and IOM, CDC, NIH) which calls for a substantial and long term investment in biomedical research. It is an absolute priority and the only way to make the necessary progress to help stop what the CDC calls a “hidden health crisis”. We would be happy to provide you with further insights based on our expertise, if needed.

Sincerely,

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/National Institutes of Health

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

Christopher Armstrong, PhD

Biochemistry researcher

Department of Biochemistry and Molecular Biology

Bio21 Molecular Science & Biotechnology Institute

The University of Melbourne

Melbourne, Victoria, Australia

Countess of Mar

Chairman of Forward-ME

House of Lords

London, UK

James N. Baraniuk, MD

Professor, Department of Medicine

Georgetown University

Washington, D.C., USA

Lucinda Bateman, MD

Medical Director

Bateman Horne Center

Salt Lake City, Utah, USA

Jonas Bergquist, MD, PhD

Professor at Department of Chemistry BMC

Uppsala University

Uppsala, Sweden

Gordon Broderick, PhD

Director, Center for Clinical Systems Biology, Rochester General Hospital

Research Associate Professor, Dep of Biomedical Engineering, Rochester Institute of Technology

Rochester, NY, USA

Jo (Geraldine) Cambridge, PhD

Professor Division of Rheumatology, Department of Medicine

University College London

London, UK

Simon Carding, PhD

Professor Mucosal Immunology

Norwich Medical School

University of East Anglia

Faculty of Medicine and Health Sciences

Head, Gut Health and Food Safety Research Programme

Quadram Institute Bioscience

Norwich Research Park

Norwich, UK

John Chia, MD

Clinician and researcher

EV Med Research

Lomita, California, USA



Lily Chu, MD, MSHS

Independent Consultant

Community Advisory Board Member, Stanford University ME/CFS Initiative

Burlingame, CA, USA

Ellen Wright Clayton, MD, JD

Craig-Weaver Professor of Pediatrics

Professor of Law, Professor of Health Policy

School of Medicine, Law School

Center for Biomedical Ethics and Society

Vanderbilt University

Nashville, Tennessee, USA

James C. Coyne, PhD

Professor Emeritus of Psychology in Psychiatry

Perelman School of Medicine

University of Pennsylvania

USA

Joan Crawford, MA, MSc

Chartered Counselling Psychologist

Chester, UK

Janet L Dafoe, PhD

Licensed Psychologist

Palo Alto, 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, California, USA

Ronald W. Davis, PhD

Director Stanford Genome Technology Center

Professor of Biochemistry and Genetics

Stanford University School of Medicine

Stanford, California, USA

Prof. Dr. em. Kenny De Meirleir

Ere Gewoon Hoogleraar Vrije Universiteit Brussel

Internist-Cardioloog

België

Jonathan C.W. Edwards, MD

Emeritus Professor of Medicine

University College London

London, UK

Derek Enlander, M.D., M.R.C.S., L.R.C.P.

Clinical Director

ME CFS Center

Mount Sinai School of Medicine

New York City, NY, USA

Fernando Estévez-López, postdoctoral researcher

Department of Physical Education and Sport, University of Granada (Spain)

Department of Psychology, Utrecht University (The Netherlands)

Mr. W.A. Faas

Verzekeringsarts

Amsterdam, Nederland

Kenneth J. Friedman, PhD (retired)

Associate Professor of Physiology and Pharmacology

New Jersey Medical School

University of Medicine and Dentistry of New Jersey

Newark, NJ, USA

Robert F. Garry, PhD

Professor of Microbiology and Immunology

Tulane University School of Medicine

New Orleans, Louisiana, USA

Maureen R. Hanson, PhD

Professor and Director

Center for Enervating Neuroimmune Disease

Cornell University

Ithaca, NY, USA

Malcolm Hooper PhD, B Pharm., MRIC, C Chem

Emeritus Professor of Medicinal Chemistry

University of Sunderland, UK

Mady Hornig, MA, MD

Director of Translational Research

Center for Infection and Immunity

Associate Professor of Epidemiology

at Columbia University Medical Center

Mailman School of Public Health

New York, NY, USA

Byron Hyde, MD

Family practice physician (for ME/CFS)

Founder of the Nightingale Research Foundation

Ottawa, Canada

Fereshteh Jahaniani, PharmD/PhD

Stanford University School of Medicine

Stanford Center for Genomics and Personalized Medicine

Palo Alto, CA, USA

Leonard A. Jason, PhD

Professor of Psychology

DePaul University

Chicago, Illinois, USA

David L. Kaufman, MD

Center for Complex Diseases

Mountain View, California

Member, The ME/CFS Collaborative Research Center at Stanford

Palo Alto, California, USA

Member of US ME/CFS Clinician Summit (hosted by Bateman Horne Center)

Betsy Keller, PhD, FACSM

Professor

Ithaca College

Ithaca, NY, USA

Nancy Klimas, MD

Professor and Chair, Department of Clinical Immunology

Assistant. Dean for Research

Dr. Kiran C. Patel, College of Osteopathic Medicine

Director, Institute for Neuro-Immune Medicine

Nova Southeastern University

Ft. Lauderdale, FL.

Director, Environmental Medicine Research and Clinical Program

Miami VA Medical Center

USA

Andreas M. Kogelnik, MD, PhD

Director, Open Medicine Institute

Mountain View, California, USA

Charles W. Lapp, MD

Medical Director

Hunter-Hopkins Center

Charlotte, North Carolina, USA

Alan R. Light, PhD

Professor of Anesthesiology

Professor of Neurobiology and Anatomy

University of Utah

Salt Lake City, Utah, USA

Sonya Marshall-Gradisnik, PhD

Professor of Immunology

Co-Director, National Centre for Neuroimmunology and Emerging Diseases

Griffith University

Queensland, Australia

Patrick O. McGowan, PhD

Associate Professor

Biological Sciences, Scarborough

Cell and Systems Biology, Psychology, Physiology

University of Toronto, Canada

Neil R McGregor, PhD

Clinical Associated Professor

Faculty of Medicine, Dentistry and Health Sciences

Bio21 Molecular Science & Biotechnology Institute

The University of Melbourne

Melbourne, Victoria, Australia

Jesper Mehlsen, MD

Senior Consultant at Syncope Center, Department of Cardiology Bispebjerg Frederiksberg Hospital (part of the University Hospitals Copenhagen)

Copenhagen, Denmark

Fane Mensah, Msc, PhD Candidate

Immunology

Department of Medicine

University College London

London, UK

Jose G. Montoya, MD, FACP, FIDSA

Professor of Medicine

Division of Infectious Diseases and Geographic Medicine

Stanford University School of Medicine

Stanford, California, USA

Dr. Sarah Myhill, MB, BS

Private medical practice

Specialty ME/CFS, mitochondrial dysfunction

Upper Weston, Knighton, UK

Luis Nacul, MD, PhD

Clinical Associate Professor

London School of Hygiene and Tropical Medicine

London, UK

Robert K. Naviaux, MD, PhD

Professor of Genetics

Biochemical Genetics and Metabolism

Departments of Medicine, Pediatrics, and Pathology

Co-director, The Mitochondrial and Metabolic Disease Center (MMDC)

UCSD School of Medicine

San Diego, CA, USA

Rikke Katrine Jentoft Olsen, MSc (biology), PhD (medicine)

Associate Professor

Research Unit for Molecular Medicine, Department of Clinical Medicine

Aarhus University

Denmark

Elisa Oltra, PhD

Professor of Molecular and Cellular Biology

Catholic University of Valencia, School of Medicine

Valencia, Spain

Anders Rosén, Dr. Med. Sc., PhD

Professor emeritus, Inflammation and Tumor Biology

Department of Clinical and Experimental Medicine

Linköping University

Sweden

Peter C. Rowe, MD

Professor of Pediatrics

Director, Chronic Fatigue Clinic

Johns Hopkins University School of Medicine

Baltimore, MD, USA

Carla Rus, MD

(Neuro)Psychiater, psychotherapeut

Nederland

Ola Didrik Saugstad, MD, PhD, FRCPE

Professor (em) of Pediatrics

Department of Pediatric Research

University of Oslo

Oslo, Norway

Charles Shepherd, MB BS FRSM

Hon Medical Adviser, ME Association (UK)

Buckingham, UK

Irving Spurr, MD

General Practitioner

Chairman of The John Richardson Group

UK

Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH

Pediatrician

County Durham, UK

Professor Donald Staines

Clinical Professor

National Centre for Neuroimmunology and Emerging Diseases

Australia

Eleanor Stein, MD, FRCP(C)

Psychiatrist in Private Practice

Assistant Clinical Professor

University of Calgary

Calgary, Alberta, Canada

Staci Stevens, MA

Founder, Exercise Physiologist

Workwell Foundation

Ripon, California, USA

Professor Umberto Tirelli

National Cancer Institute

Aviano, Italy

Christine Tobback

Dietiste, gespecialiseerd in ME/CVS

Prive praktijk

Bierbeek, Belgium

David Tuller, DrPH

Lecturer in Public Health and Journalism

University of California, Berkeley

Berkeley, California, USA

Rosemary A. Underhill, MB BS, MRCOG, FRCSE

Physician (retired), Independent researcher

Palm Coast, Florida, USA

Derya Unutmaz, MD

Professor Immunology

The Jackson Laboratory for Genomic Medicine

Principal Investigator for The Jackson Laboratory ME/CFS Collaborative Research Center Farmington, Connecticut, USA

Drs. Annemie Uyttersprot

Neuroloog/Neuropsychiater

AZ Jan Portaels

Vilvoorde, België

Michael VanElzakker, PhD

Research Fellow, Psychiatric Neuroscience Division

Harvard Medical School & Massachusetts General Hospital

Instructor, Tufts University Psychology

Boston, Massachusetts, USA

Mark VanNess, PhD

Professor – Health and Exercise Science

University of the Pacific

Stockton, California, USA

Kim Varming, MD

Chief Physician & Head of Department

Department of Clinical Immunology

Aalborg University Hospital

Denmark

Drs. Mark A. Vink

Huisarts, verzekeringsarts (niet praktiserend)

Amsterdam, Nederland

(genomineerd voor John Maddox Science Price in 2016

voor publicatie over PACE studie/heranalyse)

Prof. dr. Frans C. Visser

Cardioloog

Stichting Cardiozorg

Hoofddorp, Nederland

Tony Ward, MA (Hons), PhD, DipClinPsyc, FRSNZ

Registered Clinical Psychologist

Professor of Clinical Psychology

School of Psychology

Victoria University of Wellington

Wellington, New Zealand

Adjunct Professor, School of Psychology

University of Birmingham

Birmingham, England, UK

Adjunct Professor, School of Psychology

University of Kent

Canterbury, England, UK



William Weir, FRCP (London)

FRCP (Edinburgh)

Consultant in Infectious Diseases

UK

John Whiting, MD

Specialist Physician

Private Practice

Brisbane, Australia

Carolyn Wilshire, PhD

Senior Lecturer

School of Psychology

Victoria University of Wellington

Wellington, New Zealand

Jarred Younger, PhD

Associated professor

Department of Psychology

Director of the Neuro-inflammation, Pain and Fatigue Laboratory.

University of Alabama at Birmingham

Birmingham, AL, USA

Michael Zeineh, M.D., Ph.D.

Assistant Professor, Dept. of Radiology

Associate Chief of Neuroradiology for Operations and IT

Stanford University

Stanford, CA, USA

Marcie Zinn, PhD

Cognitive Neuroscience and Data Science

Center for Community Research

DePaul University

Chicago, Illinois, USA