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.

SOS: Save our Science
People disabled by ME and Long Covid across the UK send out an SOS. It’s time to send out our SOS signal, if we want to have funded research. May 12th, is Myalgic Encephalomyelitis Awareness Day. On this day, the #MillionsMissing of people with myalgic encephalomyelitis (ME) gather to demand an increase in research and