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

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(→‎Autonomic subgroup: added committees members)
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=== Autonomic subgroup ===
=== Autonomic subgroup ===
*Chair: [[Peter Rowe]]


====== Chair: ======
* [[Peter Rowe]], ''Johns Hopkins University, Baltimore, MD''
'''Members:'''
* Italo Biaggioni, MD, ''Vanderbilt University, Nashville, TN''
* Italo Biaggioni, MD, ''Vanderbilt University, Nashville, TN''
* [[Mady Hornig]], MD, ''Columbia University, New York, NY''
* [[Mady Hornig]], MD, ''Columbia University, New York, NY''
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=== Neuroendocrine subgroup ===
=== Neuroendocrine subgroup ===
* Chair: [[Nathan Holladay]]
 
====== Chair: ======
* [[Nathan Holladay]], ''Salt Lake City, UT''
'''Members:'''
* [[Mary Dimmock]], ''Patient Advocate''
* [[Christopher Mullins]], PhD, ''National Institute of Diabetes and Digestive and Kidney Diseases (NIH/NIDDK), Bethesda, MD''


=== Immune subgroup ===
=== Immune subgroup ===
* Co-Chairs: [[Mady Hornig]], [[Nancy Klimas]]
 
====== Co-Chairs: ======
* [[Mady Hornig]], ''Columbia University, New York, NY''
* [[Nancy Klimas]], ''Nova Southeastern University, Ft. Lauderdale, FL''
'''Members:'''
* [[Simon Carding]], PhD, ''EMERG (Institute of Food Research/University of East Anglia), Norwich, UK''
* [[Mary Dimmock]], ''Patient Advocate''
* [[Mary Ann Fletcher]], PhD, ''Nova Southeastern University, Ft. Lauderdale, FL''
* [[Nathan Holladay]], MD, PhD. ''Salt Lake City, UT''
* [[Andreas Kogelnik]], MD, PhD, ''Open Medicine Institute, Mountain View, CA''


=== QOL/Functional Status/CPET/Activity subgroup ===
=== QOL/Functional Status/CPET/Activity subgroup ===
* Drew Helmer, MD, MS, ''War Related Illness and Injury Study Center VA- New Jersey Health Care System, East Orange, NJ''
* [[Nathan Holladay]], MD, PhD, ''Salt Lake City, UT''
* [[Betsy Keller]], PhD, ''Ithaca College, Ithaca, NY''
* Rachael Korinek, ''Patient Advocate''
* [[Christopher Snell]], PhD, ''Workwell Foundation, Stockton, CA''
* [[Staci Stevens]], MA, ''Workwell Foundation, Stockton, CA''
* [[Mark VanNess]], PhD, ''University of the Pacific, Stockton, CA''


=== Biomarkers subgroup ===
=== Biomarkers subgroup ===
* Chair: [[Elisa Oltra]]<ref name="MECFScde" />
Chair: [[Elisa Oltra]]<ref name="MECFScde" />


==Notable people==
==Notable people==

Revision as of 18:42, 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]

Chair:[edit | edit source]
  • Peter Rowe, Johns Hopkins University, Baltimore, MD

Members:

  • 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]

Chair:[edit | edit source]

Members:

Immune subgroup[edit | edit source]

Co-Chairs:[edit | edit source]

Members:

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

  • Drew Helmer, MD, MS, War Related Illness and Injury Study Center VA- New Jersey Health Care System, East Orange, NJ
  • Nathan Holladay, MD, PhD, Salt Lake City, UT
  • Betsy Keller, PhD, Ithaca College, Ithaca, NY
  • Rachael Korinek, Patient Advocate
  • Christopher Snell, PhD, Workwell Foundation, Stockton, CA
  • Staci Stevens, MA, Workwell Foundation, Stockton, CA
  • Mark VanNess, PhD, University of the Pacific, Stockton, CA

Biomarkers subgroup[edit | edit source]

Chair: Elisa Oltra[2]

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)