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Open Letter: 75 International Experts Urge Netherlands to Invest in Biomedical Research for ME

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

 

Categories: Advocacy, All News, Featured news, Netherlands, Politics

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5 comments on “Open Letter: 75 International Experts Urge Netherlands to Invest in Biomedical Research for ME
  1. Ms. Kate Stewart, Former Liaison, M.E./C.F.I.D.S. Hawai'i says:

    A splendid international response that demands immediate action, instead of a long, drawn-out, ultimate indifference to the findings of so many talented & concerned individuals involved in very real attempts to alleviate the pain and discomfort of life for those discovered by their doctors and specialists to have the multiple symptoms and physical responses indicating the presence of M.E. This must not be ignored, delayed or otherwise treated with official indifference. It must be supported and acted upon with immediacy and impact.

  2. Rivka says:

    Are you still looking for signers? I might be able to get a few more if you want.

  3. Raquel mena taylor says:

    Magnífica carta, actuar en el momento adecuado y en el sitio oportuno.

    Gracias Jenni Brea. Te debemos tantooo….

    Eternamente agradecida….

  4. sophie says:

    as we say here in Holland “petje af!” (hats off to everyone involved)

  5. Frank says:

    Let’s hope where getting closer to researching a Cure,,,,I’m a Suffering from Severe ME ,it’s so Cruel 30+

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