Cort wrote: "Honestly, how can you say that ME/CFS obscured the real issue of recognizing ME? ME was added to the term with the idea in the end that the CFS would be dropped and ME (or another suitable term) would be added. It was always a transition term. Since the creation of the Canadian Consensus Criteria and with Rich Carson's "Fair Name Campaign" whose Board included Dr Peterson, Klimas, Cheney, Jason, Komaroff to name a few the IACFS changed its name, many organizations in the US added it to their name and it is now used by the DHHS - vastly increasing its credibility in the research. Rather quickly ME was on the tongues of researchers and patients.
Contrast that with its history beforehand - no integration at all into the research community with ME disappearing from the scientific literature since 1988. My guess is that co-authors of the ICC embraced 'ME' not just because it was the right thing to do but because it was the right time to do it and it was the right time because the term 'ME/CFS' had prepared the ground for it - as was always intended to happen.
I'm not sure who the 'real ME' advocates are but in my opinion the best thing they could have done to advance their cause would have been to think strategically and advance their cause would have been to embrace 'ME/CFS' realizing it was always intended to be a bridge to 'ME" (or another better term). I was part of the Fair Name Campaign and I remember vividly Rich Carson exclaiming his fervent desire for a swift transition to ME."
Cort, The real issue to ME advocates is to recognize ME. We do not want a CFS dx. So creating ME/CFS is the antithesis.
Adding a name or label is not the issue. Add ME and CFS will be dropped? How will this happen, we are advertising ME/CFS and parading around with signs and slogans about ME/CFS? It is further promoting and reinforcing it. So then say nah just kidding there's no such thing it is just a transition term?
How is this strategic thinking? Pure logic is defied. We say X is not Y. Then we go on and on about X/Y is this and X/Y research.... Then bemoan our fate when no one gets it? Sorry, we can do better than that.
I am quite sure that the ICC authors did it as the right thing to do, in spite of the ME/CFS nonsense and distractions. Because it is the right thing to do medically, scientifically and publicly, so I will give them the credit on this one.