The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National Institute of Neurological Disorders and Stroke (NINDS).
Read the first draft of the Common Data Elements for ME/CFS here.
The purpose of the CDE Project is to standardize the collection of investigational data in order to facilitate comparison of results across studies, and more effectively aggregate information into significant metadata results.
NINDS strongly encourages researchers who receive funding from the institute to use these common data elements (CDEs) in their clinical research. Researchers who receive funding from NINDS are asked to use the CDEs in their case report forms (CRFs) and data management systems whenever possible.
Why We Keep Telling the Story of ME to the Press
June 6, 2023
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Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the
