We have no
official say in the official naming. The health authorities are the only ones that get to decide, and the doctors follow the health authorities. They have no choice, either: they can only use the diagnostic tools that are provided to them (or invent a new descriptive disease entirely, as I hear some European doctors do). However, Dr. Mangan of the NIH is listening. It's because of us that he's changing to ME/CFS.
Colloquially, however,
we can say whatever we want.

:big grin:
I agree: CFS/CFIDS is doing us no good. ME is fine in the US (and actually describes at least one of the subgroups perfectly), but the term is maligned in the UK. I waffle whether we should stick to what should be a perfectly fine title of ME and thereby vindicate everyone, or whether it should be discarded because of the baggage. I think the UK/Europe people should have the most say in that.
I disagree that we have to wait for a specific causation to pick a decent name. Many disease do not have an exact particular known causation. Others, like Guillian-Barr and pneumonia, can be caused by various infections. In fact, some diseases are named for a pathology which was later found to be incorrect, and the disease name was not changed but the disease remains mislabled.
There is no reason under the sun why we cannot immediately have a respectable name designating one or more of the main pathological processes we know (or even suspect) to be going on.
If we waited for an exact particular known causation, MS would still be "hysterical paralysis." Obviously, this is not an acceptable strategy. We know a good deal about the pathology, but we don't know the actual cause of MS (although there is evidence in the literature that it may be associated with a retrovirus, which could be causative). The disease title describes a pathology, not the cause.
I like most of the suggestions. Pronounceability is a good consideration, though.
I do think we should include something that indicates neurological involvement. It doesn't really matter whether the general public understands (who from the public knows what "sclerosis" or "erythematosus" mean, anyway?). We can spell out central nervous system if we need to. As long as news people know that this means actual physical nerves with dendrites, and not a "nervous complaint" (i.e. Beard-style neurasthenia... did you know that disease title originally meant they thought something was biologically wrong with actual physical nerves?)
Aside from that, I kind of like MIDIS, except it sounds like a music file.