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

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

Chair (Overall/Cognitive):

 * Gudrun Lange, PhD, Mount Sinai School of Medicine, New York, NY

Chair (CNS Imaging):

 * Jarred Younger, PhD, The University of Alabama, Birmingham, AL

Co-Chairs (Neurologic):

 * Jose Montoya, MD, Stanford University, Stanford, CA

Members:
 * Kimberly Sullivan, PhD, Boston University, Boston, MA
 * James Baraniuk, MD, Georgetown University, Washington, DC
 * Jonas Bergquist, MD, PhD, EMERG (Uppsala University), Uppsala, Sweden
 * Emmeline Edwards, PhD, Division of Extramural Research, National Center for Complementary and Integrative Health (NCCIH), Bethesda, MD
 * Neil Harrison, MB, BS, PhD, MRCP, MRCPsych, EMERG (Sussex University), East Sussex, UK
 * Eliana Mattos Lacerda, MD, PhD, London School of Hygiene, London, UK
 * Jin-Mann Sally Lin, PhD, Centers for Disease Control and Prevention (CDC), Atlanta, GA
 * Denise Lopez-Majano, Patient Advocate
 * Anna-Louise Midsem, European ME Alliance
 * Zaher Nahle, PhD, MPA, Solve ME/CFS Initiative, Los Angeles, CA
 * Benjamin Natelson, MD, Pain and Fatigue Study Center, New York, NY (Ad Hoc)
 * Lubov Nathanson, PhD, Nova Southeastern University, Ft. Lauderdale, FL
 * Matina Nicholson, Patient Advocate
 * Nicole Prestley, The University of British Columbia, Vancouver, BC, Canada
 * Richard Simpson, European ME Alliance
 * Terri Wilder, Patient Advocate
 * Michael Zeineh, MD, PhD, Stanford University, Stanford, CA
 * Marcie Zinn, PhD, The Neuro-Cognitive Research Institute (NCRI), Chicago, IL

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