In December and January, the National Institute of Neurological Disorders and Stroke (NINDS) branch of the NIH had a public review period where the public could comment on the ME/CFS Common Data Elements (CDEs) with their feedback and recommendations for changes. The CDE Working Group has now released all of the comments from the review period, which they have used to modify the CDEs.
The comments were very extensive, and the majority of reviewers agreed that there were gaps in the previous CDEs. A significant number of the commenters asked for specific and consistent diagnostic criteria to be used for all research studies, such that the criteria used is not too broad, and the data from different studies can be compared to each other. There were also several comments that suggested better definitions for both fatigue and post exertional malaise (PEM) be used, as these were not defined clearly. The community has put in an extensive amount of effort to submit these comments, and it is clear that they are hopeful that good data standards will contribute to ME/CFS research.