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ME/CFS Clinicians Challenge IOM Contract, Adopt Canadian Consensus Criteria

  [ 20 votes ]   [ Discuss This Article ] • September 23, 2013

Editor's Comment: The following letter represents a milestone in the ongoing struggle to define ME/CFS. Although the 2003 Canadian Consensus Criteria (CCC) have been endorsed by ME/CFS physicians and researchers worldwide as being more accurate and more practical than the CDC's Fukuda case definition, ME/CFS experts have not - until now - made a direct appeal to HHS to formally adopt the CCC. The 35 signatures on this letter represent the top researchers and clinicians in the field, speaking with one voice to demand that the HHS stop trying to bury this illness under a case definition that will undo a decade of scientific research.

Note: You can support this letter by signing the petition to change the definition - change the name.

An Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services

September 23, 2013

Dear Secretary Sebelius,

We are writing as biomedical researchers and clinicians with expertise in the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to inform you that we have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.

The 1994 International Case Definition (Fukuda et al, 1994), commonly known as the Fukuda definition, was the primary case definition for ME/CFS for almost two decades. However, in recent years expert researchers and clinicians have increasingly used the CCC, as they have recognized that the CCC is a more scientifically accurate description of the disease.

The CCC was developed by an international group of researchers and clinicians with significant expertise in ME research and treatment, and was published in a peer-reviewed journal in 2003 (Carruthers et al, Journal of Chronic Fatigue Syndrome, 2003). Unlike the Fukuda definition, the more up-to-date CCC incorporates the extensive scientific knowledge gained from decades of research. For example, the CCC requires the symptom of post-exertional malaise (PEM), which researchers, clinicians, and patients consider a hallmark of the disease, and which is not a mandatory symptom under the Fukuda definition. The CCC was endorsed in the Primer for Clinical Practitioners published by the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME). This organization is the major international professional organization concerned with research and patient care in ME/CFS.

The expert biomedical community will continue to refine and update the case definition as scientific knowledge advances; for example, this may include consideration of the 2011 ME International Consensus Criteria (Carruthers et al, Journal of Internal Medicine, 2011). As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care. This step will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future. 

We strongly urge the Department of Health and Human Services (HHS) to follow our lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.

In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.ME/CFS patients who have been disabled for decades by this devastating disease need to see the field move forward and there is no time to waste. We believe that our consensus decision on a case definition for this disease will jump start progress and lead to much more rapid advancement in research and care for ME/CFS patients. We look forward to this accelerated progress and stand ready to work with you to increase scientific understanding of the pathophysiology of this disease, educate medical professionals, develop more effective treatments, and eventually find a cure. 


United States Signatories

Dharam V. Ablashi, DVN, MS, Dip Bact.

Scientific Director of HHV-6 Foundation

Co-founder of IACFS/ME

Santa Barbara, California


Lucinda Bateman, MD 

Director, Fatigue Consultation Clinic 

Executive Director, OFFER 

Salt Lake City, Utah


David S. Bell, MD, FAAP

Researcher and Clinician

Associate Professor of Pediatrics

State University of New York at Buffalo

Lyndonville, New York


Gordon Broderick, PhD 

Professor, Center for Psychological Studies 

Director, Clinical Systems Biology Lab

Institute for Neuro Immune Medicine, 

Nova Southeastern University 

Fort Lauderdale, Florida


Paul R. Cheney, MD, PhD

Director, The Cheney Clinic, PA

Asheville, North Carolina


John K.S. Chia, MD

Researcher and Clinician

President, EV Med Research

Lomita, California


Kenny L. De Meirleir, MD, PhD

Professor Emeritus Physiology and Medicine (Vrije Universiteit Brussel)

Medical Director, Whittemore-Peterson Institute

University of Nevada

Reno, Nevada


Derek Enlander, MD, MRCS, LRCP

Attending Physician

Mount Sinai Medical Center, New York

ME CFS Center, Mount Sinai School of Medicine

New York, New York


Mary Ann Fletcher, PhD

Schemel Professor of NeuroImmune Medicine

Institute for Neuro Immune Medicine

Nova Southeastern University

Fort Lauderdale, Florida


Ronald Glaser, PhD, FABMR

Director, Institute for Behavioral Medicine Research

Kathryn & Gilbert Mitchell Chair in Medicine

College of Medicine - Distinguished Professor

Professor, Molecular Virology, Immunology and Medical Genetics

Professor, Internal Medicine

Professor, Division of Environment Health Sciences, College of Public Health

Institute for Behavioral Medicine Research

Columbus, Ohio


Maureen Hanson, PhD

Liberty Hyde Bailey Professor

Department of Molecular Biology and Genetics

Cornell University

Ithaca, New York


Leonard A. Jason, PhD

Professor of Psychology

DePaul University

Chicago, Illinois


Nancy Klimas, MD

Director, Institute for Neuro Immune Medicine

Professor, Nova Southeastern University

Fort Lauderdale, Florida


Gudrun Lange, PhD

Clinical Neuropsychologist

Professor, Rutgers New Jersey Medical School

Newark, New Jersey


A. Martin Lerner, MD, MACP

Professor, Infectious Diseases

Oakland University William Beaumont School of Medicine

Emeritus Director, Infectious Diseases, Wayne State University School of Medicine

Master, American College of Physicians

Reviewer, Viral Diseases, Medical Letter

Beverly Hills, Michigan


Susan Levine, MD

Researcher and Clinician, Private Practice

New York, New York

Visiting Fellow, Cornell University

Ithaca, New York


Alan R. Light, PhD

Professor, Department of Anesthesiology and Department of Neurobiology and Anatomy

University of Utah

Salt Lake City, Utah


Kathleen C. Light, PhD


Professor, Department of Anesthesiology

University of Utah School of Medicine

Salt Lake City, Utah


Peter G. Medveczky, MD

Professor, Department of Molecular Medicine

College of Medicine

University of South Florida

Tampa, Florida


Judy A. Mikovits, PhD

Researcher, MAR Consulting, LLC

Carlsbad, California


Jose G. Montoya, MD, FACP, FIDSA 

Professor of Medicine

Division of Infectious Diseases and Geographic Medicine 

Stanford University School of Medicine 

Stanford, California


James M. Oleske, MD, MPH

François-Xavier Bagnoud Professor of Pediatrics

Director, Division of Pediatrics Allergy, Immunology & Infectious Diseases

Department of Pediatrics, Rutgers New Jersey Medical School

Newark, New Jersey


Martin L. Pall, PhD

Professor Emeritus of Biochemistry and Basic Medical Sciences

Washington State University

Portland, Oregon


Daniel Peterson, MD

Founder and President of Sierra Internal Medicine

Incline Village, Nevada


Richard Podell, MD, MPH

Clinical Professor, Department of Family Medicine

UMDNJ Robert Wood Johnson Medical School

New Brunswick, New Jersey


Irma Rey, MD


Institute for Neuro Immune Medicine

Nova Southeastern University

Fort Lauderdale, Florida


Christopher R. Snell, PhD

Professor, Health, Exercise and Sport Sciences

University of the Pacific

Stockton, California


Connie Sol, MS, PhDc 

Clinical Exercise Physiologist 

Institute for Neuro Immune Medicine 

Nova Southeastern University 

Fort Lauderdale, Florida


Staci Stevens, MA

Exercise Physiologist

Founder, Workwell Foundation

Ripon, California


Rosemary A. Underhill, MB BS, MRCOG, FRCSE

Independent Researcher

Palm Coast, Florida


Marshall V. Williams, PhD

Professor, Departments of Molecular Virology, Immunology and Medical Genetics; Microbiology

The Ohio State University

Columbus, Ohio


International Signatories


Birgitta Evengard MD, PhD

Professor, Division Infectious Diseases

Umea University

Umea, Sweden


Sonya Marshall-Gradisnik, PhD 

Director, National Centre for Neuroimmunology and Emerging Diseases 

Griffith Health Institute 

Professor, Griffith University Parklands Gold Coast 

Queensland, AustraliaCharles Shepherd, MB BS

Honorary Medical Adviser to the ME Association

London, United Kingdom


Rosamund Vallings MNZM, MB BS

IACFS/ME Secretary 

Clinician, Howick Health and Medical Clinic

Auckland, New Zealand



Dr. Howard Koh, Assistant Secretary for Health

Dr. Richard Kronick, Director, Agency for Healthcare Research and Quality

Dr. Thomas Frieden, Director, Centers for Disease Control and Prevention

Ms. Marilyn Tavenner, Administrator, Centers for Medicare and Medicaid Services

Dr. Margaret Hamburg, Commissioner, U.S. Food and Drug Administration

Dr. Mary Wakefield, Administrator, Health Resources and Services Administration

Dr. Francis Collins, Director, National Institutes of Health

Ms. Carolyn W. Colvin, Commissioner, Social Security Administration

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