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NIH Is Soliciting Public Comments - 12/15/2017 Thru 1/31/2018 re Draft of Proposed ME/CFS C.D.E.’s


Senior Member
NINDS/CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review Period – December 15, 2017 to January 31, 2018

Dear CDC ME/CFS SEC Call Group,

We know you’re interested in ME/CFS developments so wanted to make sure you were aware of this.

Dear Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) clinical research community,

The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), and Centers for Disease Control and Prevention (CDC) recently assembled an external working group of international experts, patients and advocates to develop a set of ME/CFS Common Data Elements (CDEs) for use in clinical research. These documents are available on theNINDS CDE website from December 15, 2017 - January 31, 2018 for feedback from the ME/CFS research and practice community. We hope you will take the time to review the draft CDEs and provide your comments prior to the general release.

To access and review the CDE recommendations please go to the website: https://commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards

Zip file here: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review

Please feel free to review and provide comments on as many domains as you wish. We look forward to your feedback and ask you to please submit your comments by January 31, 2018.

We hope that you will share this announcement with your colleagues and encourage them to provide feedback as well. Thank you for your time.



Email: NINDSCDE@emmes.com


For more information about PR Members involvement in a joint response to this proposal, please review this thread - http://forums.phoenixrising.me/inde...vocacy-project-w-deadline-of-1-31-2018.56716/
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