It's still just describing a symptom. I prefer a name that uses medical language, or that points to causality (although I know that's pretty hard to do at this point in our research. But it sounds really vague, and unprofessional... pretty much like "We Don't Know WTF is Wrong Disease." Maybe we should call it WDKWTFIWD?
I agree with some others that is sounds incomplete. I'll take it over CFS any day, but why go to all the trouble changing a name when the entire world except the US has known it as M.E. since 1950, and as we progress in research we'll just have to change it again when we actually know the cause?
This is still covering waaaay too many illnesses at once, it's not really narrowing anything down since it's still about symptoms. We're still likely covering people with hormonal imbalance, people with mercury poisoning, people with gut yeast, people with immune dysfunction, etc. etc. all in one group of separate causes with overlapping symptoms.
Can anyone explain to me WHY this does not include a requirement for low NK-cell activity/count? Is that not a pretty consistent and unusual biomarker? And is there a required test and a set measurement for Post-Exertional Malaise, or just the usual self-reporting BS that gets us nowhere but a whole lot of skeptical doctors crying "Hypochondriac!" ? It's a total waste of time to have a new set of criteria and a new name, and put all the money into changing the names of organizations and their respective forms and letterhead stationary, just for something totally vague and no more measurably scientific than the last definition and name.
I'm most in favor of the fact that they're TRYING to change the name - to me, that is the best news we've had as a patient community in decades! Enough people across agencies felt that this disease was important enough, severe enough, and costly enough to our nation to try to be thoughtful about its name and the impact of such on patients! But if you're changing the name for the patients' benefit, it would seem obvious that you should conduct extensive poll voting in the patient communities first; and if you're doing it for the doctors, it would seem obvious that you should use a name doctors are more likely to take seriously and respond to, in more precise medical language. And NOT just describing symptomology!
I like the Disease part, but I don't like the "Intolerance" part, because that is SUCH a big spectrum, and to me does not indicate that this is very serious. Many people have "intolerance" to things, and while Systemic is good, an "intolerance" might simply mean you feel a little off, and not that something is making you treacherously sick and in danger of dying due to secondary cause such as cancer growth because your cells are not fighting it as they should, or death by inflammation in the brain stem, or eventual heart attack because of such strain on a totally inefficient heart function. "Exertional" is ok, because that does at least allow for the possible understanding that both physical and cognitive (as well as visual and even auditory) exertion are triggers. At least I would say that "Exertional Intolerance" may really help with Disability cases, whether federal or for temporary leaves from workplaces.
So without having taken eons to think about it, I will suggest:
Autonomic Collapse Disease (ACD - given that Autonomic Dysfunction- or Disregulation- Disease, or ADD already being taken by Attention Deficit)
Systemic Autonomic and NK Disregulation(Dysfunction?) Disease (SANKDD) - sort of, but not thrilled with SANK in the name feeling less than optimistic!
Natural Killer Cell Deficit Disease (NKCDD)
Total Systemic Failure Disease (TSFD) - LOL, this one wouldn't really pass medical muster
ImmuneNeuroCardioAutonomicGastroEndocrine Disease (INCAGED)? - let's just try to name every single system that's messed up in the disease?...lol - at least I like the name CAGED in the title, because that is what our lives are like
Really, if this name is supposed to be only for the US, I really recommend getting behind M.E. (-opathy) just for uniformity with the rest of the world as should have been the case all along. It doesn't make sense for different industrialized English-speaking countries to use wildly different names for the same disease in a globalized medical community, just like it makes no sense for us to be the only ones not to use the metric system. We are just creating more problems for patients, doctors, and research, especially in an increasingly globalized world.
Aside from further alienating us from the rest of the international medical community, I do think that the current name is an improvement but is missing some key biomarkers (even if they are still vague). I mean, doesn't everyone in a set of severely ill patients pretty much have Natural Killer Cell abnormalities, as well as autonomic dysfunction, as well as the P-E Malaise (a term I also detest because "Malaise" is as bad as "Fatigue." Isn't it time we define a group of patients for whom immune, neurological, gastrointestinal, endocrine, and autonomic dysfunction ALL SIMULTANEOUSLY are the norm?
[LOL to the post that SEIDS backwards is DIES! It's not funny, but thanks to that poster, because that was the biggest laugh I've had in such a long time. If we don't keep our sense of humor in this, we've got nothing. I find it ironic, and I will probably laugh every time I have to write the acronym if they keep this name. I could use the extra chuckles during my many pointless trips to the doctors', who all collectively have absolutely no clue what to do with us, but gladly take the money anyway.
How about
Arrogant and Dismissive Doctor Syndrome?(ADDS) - that is certainly a set of symptoms the majority of patients share suffering through, right?)]
Best wishes to you all, and keep your sense of humor in this rollercoaster!