Renaming the disease: who calls the shots?

That is economic and medical politics. I have been warning about this for over a decade, and sent a global advisory way back when to warn the wiki entry was hijacked by special interests. ANY new name will be subject to the same interference, the special interests are embedded with Wikipedia. To prevent that we have to win the larger political issues. We may need much more influential science to get there.

A name change would have to be backed by very strong evidence to fight back against strong economic and medical interests. Which is why I emphasized biomarkers and mechanisms. Once we get there then advocacy will come into its own, and we can make sure the evidence is raised everywhere its needed.

As others have commented this might lead to a breaking up of the ME and CFS categories into many subgroups. Or not. We await the evidence. Its entirely possibly in my view that ME affects so many hundreds of biochemical pathways that other factors, including comorbidities and genetics, might lead to a widely different expression of the disease in patients, including changes in symptoms over time. Heck, even an exact tissue distribution of the original triggering pathogen might lead to different disease expression.