Just some small news that I found encouraging to see. In the first chapter of the new book How to be disabled and proud (or at least kinda sorta okay with it) by Cathy Rea, which is a guide for disabled kids/youngsters, ME/CFS is mentioned as an example of chronic illness. ("Chronic illnesses are long term health conditions that limit your everyday life and/or mean you need extra medical support. Alzheimer's, cancer and ME/CFS are examples of chronic illnesses.")
