https://www.openaccessgovernment.org/article/common-data-elements-to-advance-me-cfs-research/189538/ Common data elements to advance ME/CFS research First Published: 11th March 2025 Last Modified: 11th March 2025 Standardizing data collection in ME/CFS research through Common Data Elements is a crucial step toward improving diagnosis, advancing treatments, and fostering collaboration across studies to accelerate progress in understanding this complex disease Enger M, Carnes M, Morris Brown L. Common data elements to advance ME/CFS research. Open Access Gov. 2025 Mar 11. https://www.openaccessgovernment.org/article/common-data-elements-to-advance-me-cfs-research/189538/ Ref: https://mecfs.rti.org
I dislike the inclusion of "fatigue", since ME has a fatigue-like symptom, rather than standard fatigue. Activity reduction is probably mostly due to that fatigue-like symptom, although brainfog reduces desire or ability to do activities too. Okay, other associated ME symptoms such as POTS or digestive distress would too. I think I'm most annoyed at the expectation that some people involved in ME research are probably patting themselves on the back for this simplistic and flawed chart being a "major advance in ME research".
