In my opinion the most important aspect is that the name is historically tied to a specific well defined clinical entity. To change the name risks losing that important distinction and conflates it with other similar syndromes e.g. CFS, SEID, etc.
We know the definition is tighter. However we do not know that, for example, the 1934 cluster outbreak was the same disease as the 1955 cluster outbreak. Nor do we know if sporadic ME is the same. There is a lot of data to suggest ME as we now define it is two or more different diseases, though this could be two manifestations of the same disease. As the science evolves this last point keeps being reinforced by the 60-40 to 70-30 split in biochemistry.
Its the science that will define it eventually, so that means political and scientific will, plus funding, plus careful research. We will then most likely get a new name/s. We may then have no say in what those are.
Its also the case that using ME is not going to fix the problem. That ship sailed a long time ago. ME is most widely considered a psychiatric problem. Changing the name does not change that. We have to fight that separately, something that is one of my main goals .... psychobabble is not science. Politically we will find, and history has shown this, that changing the name will just mean creating another thing to equate together. What we have, politically and psycho-medically, is psychoCFS=CFS=ME=SEID. Just changing the name is NOT enough. We need to actively fight this association. ME is already so deeply anchored into a CFS equivalent that its very hard to fight, no matter the evidence we have.
Further, even a well defined ME cohort is far too heterogeneous. We have three potential axes of variation, and there may be more. They are severity, duration, and symptom clustering (degree of caseness). However there is no guarantee that the same severity, same duration, and same symptoms, mean the same disease, unless the are all from one single cluster outbreak.
CFS cohorts are typically even more heterogeneous of course, which means even harder to study properly.
ME is still the best name we have though. Its just not the thing we should have on the top of the list of what we are fighting for. Its also that using a good research definition, and getting funding and scientific interest, are near the top of the list.
If we presume, for example, that the autoimmune theory is correct, then we get an even worse situation. Two thirds autoimmune, one third not. However it currently looks like the two thirds autoimmune is actually a cluster of multiple diseases with similar symptoms.
It is interesting that Nancy Klimas is now willing to say that low NK function is a diagnostic biomarker, though she also admits that nearly all path labs are incapable of properly running the tests. Its not only that they need state of the art technology, they only have eight hours to do the testing before it becomes invalid. Take the blood, set the timer, go. Most labs take longer than that, so the tests are invalid.
Now, if we can prove that low NK function is a diagnostic biomarker, and prove it fits a particular (or newly modified) ME definition, and make clinical testing widely available, then we have something to fight for. This already has a name though, one that is used for ME in Japan, Natural Killer Cell Dysfunction Syndrome, or something similar.
