Public Review Period for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDEs:
December 15, 2017 – January 31, 2018
The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Working Group and the National Institute of Neurological Disorders and Stroke (NINDS)/Centers for Disease Control and Prevention (CDC) CDE Team have released a draft version (Pre-release Version 0.0) of the ME/CFS CDEs for public review.
The ME/CFS CDE Working Group was divided into the following subgroups:
(1) Baseline/Covariate Information;
(2) Fatigue;
(3) Post-Exertional Malaise (PEM);
(4) Sleep;
(5) Pain;
(6) Neurologic/Cognitive/CNS Imaging;
(7) Autonomic;
(8) Neuroendocrine;
(9) Immune;
(10) Quality of Life(QoL)/Functional Status/CPET/Activity;
and (11) Biomarkers.
Reviewers may comment on any portion of the recommendations based on their expertise. Comments can be sent in the text of an email to NINDSCDE@emmes.com, in the provided template response spreadsheet or via annotations within the documents.
After the public review period, the ME/CFS CDE Working Group will review and revise the recommendations as needed. Version 1.0 of the ME/CFS recommendations will be posted at the end of February 2018.
Please note that changes are still being incorporated and final documents will not be available until February 2018.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review
continues at:
http://bit.ly/2AMtWXt
i.e.
https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards