ME/CFS Common Data Elements Working Group: Difference between revisions

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=== Autonomic subgroup ===
=== Autonomic subgroup ===
*Chair: [[Peter Rowe]]
*Chair: [[Peter Rowe]]
* Italo Biaggioni, MD, ''Vanderbilt University, Nashville, TN''
* [[Mady Hornig]], MD, ''Columbia University, New York, NY''
* [[Ben Katz]], MD, ''Lurie Children's Hospital, Chicago, IL''
* Denise Lopez-Majano, ''Patient Advocate''
* [[Katherine Rowe]], MBBS, MD, ''Royal Childrens Hospital, Melbourne, Australia''


=== Neuroendocrine subgroup ===
=== Neuroendocrine subgroup ===

Revision as of 18:34, October 19, 2019

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.[1][2]


CDE working groups[edit | edit source]

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

Baseline/Covariate subgroup[edit | edit source]

Co-chairs:[edit | edit source]
Members[edit | edit source]

Fatigue subgroup[edit | edit source]

Chair:[edit | edit source]
  • David Cella, PhD, Northwestern University, Evanston, IL
Members:[edit | edit source]

Post-exertional malaise subgroup[edit | edit source]

Co-chairs:[edit | edit source]

Members:

Sleep subgroup[edit | edit source]

Members:

Pain subgroup[edit | edit source]

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[edit | edit source]

Chair (Overall/Cognitive):[edit | edit source]
  • Gudrun Lange, PhD, Mount Sinai School of Medicine, New York, NY
Chair (CNS Imaging):[edit | edit source]
Co-Chairs (Neurologic):[edit | edit source]

Members:

  • 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[edit | edit source]

  • Italo Biaggioni, MD, Vanderbilt University, Nashville, TN
  • Mady Hornig, MD, Columbia University, New York, NY
  • Ben Katz, MD, Lurie Children's Hospital, Chicago, IL
  • Denise Lopez-Majano, Patient Advocate
  • Katherine Rowe, MBBS, MD, Royal Childrens Hospital, Melbourne, Australia

Neuroendocrine subgroup[edit | edit source]

Immune subgroup[edit | edit source]

QOL/Functional Status/CPET/Activity subgroup[edit | edit source]

Biomarkers subgroup[edit | edit source]

Notable people[edit | edit source]

Notable studies[edit | edit source]

Funding[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. National Institute of Neurological Disorders and Stroke. "NINDS Common Data Elements". www.commondataelements.ninds.nih.gov. Retrieved February 7, 2019. Cite has empty unknown parameter: |dead-url= (help)
  2. 2.0 2.1 National Institute of Neurological Disorders and Stroke. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Standards | NINDS Common Data Elements". www.commondataelements.ninds.nih.gov. Retrieved February 7, 2019. Cite has empty unknown parameter: |dead-url= (help)