The National Institute of Neurological Disorders and Stroke (NINDS) branch of the NIH has now released the first draft of the ME/CFS Common Data Elements (CDEs) to the public. The CDE Working Group recently had a public review period in January 2018, where the public could review and comment on the CDEs with their recommendations. After the review period, the Working Group reviewed all of the comments and published the final CDEs.
The purpose of reviewing and revising the ME/CFS CDEs was to standardize clinical and molecular data collection to aid in comparing the results across multiple studies. NINDS has asked that researchers who have been funded by the NIH use these CDEs in their research of ME/CFS whenever possible.
Click here to read the first draft of the Common Data Elements for ME/CFS on the NINDS website.