Hmmm, I have been around those 30+ years and have NEVER seen the collective "Nicey nicey" approach vis-a-vis CEBV, ME, CFS, ME/CFS or whatever you care to call it. Maybe some "leadership" factions have done it briefly, but it has been never fully supported. What I have seen is monumental infighting and bickering among patients, fractured and non-cohesive leadership positions, and a pervasive lack of consensus on internet forums. And annihilation of medics and scientists that are careless enough to involve themselves with the "cause". And denial, denial, denial. About so many obvious things; "We have no PR problem". "It does not matter what the public thinks about our posts - they will never "get it" anyway". "Comparing a low-level government bureaurcrat to Hitler or Stalin makes perfect sense". "We are in control now because someone who USED to be involved with decisions about our illness has died - time to "pile on". THAT is sure to get us the results we are looking for . . ."