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:

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

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

Co-chairs:
Members:
 * Lily Chu, MD, MSHS, Stanford University, Burlingame, CA
 * Mary Dimmock, Patient Advocate
 * 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

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

Learn more

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