ME/CFS Common Data Elements Working Group

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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]

Common Data Elements or CDEs are standardized terms or concepts used in clinical or research studies thus allowing the data to be compared and combined across studies.[3]

CDEs may be classified as:[4]

  • Universal - CDEs used in studies regardless of the specific disease or condition of interest such as demographic information;
  • Domain-specific - CDEs designed and intended for use in studies of a particular topic, disease or condition, body system;
  • Required- CDEs that are required or expected, as a matter of institutional policy, to be collected for all subjects;
  • Core - CDEs that are required or expected to be collected in particular classes of studies.

CDE working groups[edit | edit source]

There are 11 subgroups focusing on identifying and defining the common data elements in ME/CFS:[2]

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]

Members:

  • 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:[edit | edit source]

Members:

  • Jonas Bergquist, MD, PhD, EMERG (Uppsala University), Uppsala, Sweden
  • Simon Carding, PhD, EMERG (Institute of Food Research/University of East Anglia), Norwich, UK
  • Lily Chu, MD, MSHS, Stanford University, Burlingame, CA
  • Ronald Davis, PhD, Stanford University, Stanford, CA
  • Maureen Hanson, PhD, Cornell University, Ithaca, NY
  • Lubov Nathanson, PhD, Nova Southeastern University, Ft. Lauderdale, FL
  • David Patrick, MD, The University of British Columbia, Vancouver, BC, Canada

NIH/NINDS/CDC[edit | edit source]

Members:

  • Elizabeth Unger, MD, PhD, The Centers for Disease Control and Prevention (CDC), Atlanta, GA
  • Vicky Whittemore, PhD, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • M. Carolina Mendoza-Puccini, MD, Scientific Program Specialist, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Claudia Moy, PhD, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Andrew Breeden, PhD, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland

NINDS CDE Team[edit | edit source]

Members:

  • Katelyn Gay, BS, The Emmes Corporation
  • Sherita Ala'i, MS, The Emmes Corporation
  • Joy Esterlitz, MS, The Emmes Corporation
  • Kristen Joseph, MA, The Emmes Corporation
  • Muniza Sheikh, MS, MBA, The Emmes Corporation
  • Sarah Tanveer, BS, The Emmes Corporation

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.
  2. 2.02.1 "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | NINDS Common Data Elements". www.commondataelements.ninds.nih.gov. Retrieved October 19, 2019.
  3. "Common Data Element (CDE) - Clinfowiki". clinfowiki.org. Retrieved October 19, 2019.
  4. "Glossary". www.nlm.nih.gov. Retrieved October 19, 2019.

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 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.

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.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.