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.
The ME community has had a lot of questions about whether it is safe to get the COVID-19 vaccine. ME/CFS experts from the Center for Complex Diseases, the Institute for Neuro-immune Medicine and the Bateman Horne Center have weighed in with their recommendations on this matter. Overall, clinicians are recommending that people with ME get