ME/CFS Common Data Elements Working Group

The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Common Data Elements (or ME/CFS CDE) project is part of the National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements project, which involves research into many neurological diseases.

CDE working groups

There are 11 subgroups focusing on identifying and defining the common data elements in ME/CFS:

Baseline/Covariate subgroup

Co-chairs:

• Anthony Komaroff, Harvard University, Boston, MA
• Jose Montoya, Stanford University, Stanford, CA

Members

• Alison Bested, MD, Nova Southeastern University, Davie, FL
• Fred Friedberg, PhD, Stony Brook Health Sciences, Stony Brook, NY

• Leonard Jason, PhD, DePaul University, Chicago, IL

• Eliana Mattos Lacerda, MD, PhD, London School of Hygiene, London, UK
• Denise Lopez-Majano, Patient Advocate
• Anna-Louise Midsem, European ME Alliance, Hobro, Denmark
• Zaher Nahle, PhD, MPA, Solve ME/CFS Initiative, Los Angeles, CA
• Lubov Nathanson, PhD, Nova Southeastern University, Ft. Lauderdale, FL
• Matina Nicholson, Patient Advocate
• Elisa Oltra, PhD, Universidad Católica de Valencia San Vicente Mártir, Valencia, Spain
• Nicole Prestley, The University of British Columbia, Vancouver, BC, Canada
• Richard Simpson, European ME Alliance
• Michael Zeineh, MD, PhD, Stanford University, Stanford, CA

Fatigue subgroup

Chair:

• David Cella, PhD, Northwestern University, Evanston, IL

Members:

• Mary Dimmock, Patient Advocate
• Fred Friedberg, PhD, Stony Brook Health Sciences, Stony Brook, NY
• Jin-Mann Sally Lin, PhD, Centers for Disease Control and Prevention (CDC), Atlanta, GA
• Luis Nacul, MD, PhD, London School of Hygiene, London, UK
• Leorey Saligan, RN, PhD, National Institute of Nursing Research (NINR/NIH), Bethesda, MD

Post-exertional malaise subgroup

Co-chairs:

• Lily Chu, MD, MSHS, Stanford University, Burlingame, CA
• Mary Dimmock, Patient Advocate

Members:

• David Cella, PhD, Northwestern University, Evanston, IL
• Dane B. Cook, PhD, University of Wisconsin, Madison, WI
• Betsy Keller, PhD, Ithaca College, Ithaca, NY
• Anna-Louise Midsem, European ME Alliance
• David Patrick, MD, The University of British Columbia, Vancouver, BC, Canada
• Richard Simpson, European ME Alliance

Sleep subgroup

Members:

• Lily Chu, MD, MSHS, Stanford University, Burlingame, CA
• Susan Levine, MD, New York, NY
• Katherine Rowe, MBBS, MD, Royal Childrens Hospital, Melbourne, Australia
• Kimberly Sullivan, PhD, Boston University, Boston, MA

Pain subgroup

Members:

• Lucinda Bateman, MD, Bateman Horne Center, Salt Lake City, UT
• Emmeline Edwards, PhD, Division of Extramural Research, National Center for Complementary and Integrative Health (NCCIH), Bethesda, MD
• Rachael Korinek, Patient Advocate
• Leorey Saligan, RN, PhD, National Institute of Nursing Research (NINR/NIH), Bethesda, MD
• Yolanda Vallejo, PhD, Integrative Biology and Infectious Diseases Branch, National Institute of Dental and Craniofacial Research, National Institutes of Health, Bethesda, MD
• Marcie Zinn, PhD, The Neuro-Cognitive Research Institute (NCRI), Chicago, IL

Neurologic/Cognitive/CNS Imaging subgroup

• Chairs: Gudrun Lange (Overall/Cognitive), Jarred Younger (CNS Imaging)
• Co-Chairs: Jose Montoya (Neurologic), Kimberly Sullivan (Neurologic)

Autonomic subgroup

• Chair: Peter Rowe

Neuroendocrine subgroup

• Chair: Nathan Holladay

Immune subgroup

• Co-Chairs: Mady Hornig, Nancy Klimas

Biomarkers subgroup

• Chair: Elisa Oltra

Notable people

• Ron Davis
• Lily Chu

Online presence

• Twitter
• Facebook
• Website
• YouTube

See also

• National Institute of Neurological Disorders and Stroke

Learn more

• Wikipedia
• ME/CFS Common Data Elements Project Frequently Asked Questions

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

cognition Thought processes, including attention, reasoning, and memory.

central nervous system (CNS) - One of the two parts of the human nervous system, the other part being the peripheral nervous system. The central nervous system consists of the brain and spinal cord, while the peripheral nervous system consists of nerves that travel from the central nervous system into the various organs and tissues of the body.

two-day cardiopulmonary exercise test (CPET) - A diagnostic test which involves testing an ME/CFS patient exercising on an exercise machine, while monitoring their respiration, especially oxygen consumption. This test is repeated the following day in order to confirm the patient's inability to replicate the first-day performance. This test is thought to be the most objective way to detect post-exertional malaise.