I think a lot of excellent points have been raised in this thread by a number of people. Let me summarize what I think are the most important requirements for a name for this disease. I understand that not everyone agrees with all of them, but we are not going to have complete unanimity on everything. Here's the best I can come up with for the name requirements:
- It should be descriptive. People should be able to tell immediately, just from the name, what the basics of the disease are. If this requirement is not met, you get dialogs like the following: "Ramsay's Disease? What's that?" "It's what used to be known as Chronic Fatigue Syndrome." "Oh, right! Psychiatry is down the hall and to the left."
- It should not have any ambiguous words in its name. "What disease did you say you had?" "S.E.I.D." "What does that stand for?" "Systemic Exertional Intolerance Disease." "Oh, so you can't tolerate exercise! That sounds a lot like chronic fatigue syndrome. Psychiatry is down the hall and to the left."
- The acronym should not have any negative connotations. This, unfortunately, is what sank NEIDS, but I think that the fears there were justified. We really don't have any margin for error here.
- No reference to chronic fatigue syndrome should be made, either directly or indirectly. You could give chronic fatigue syndrome the Ramsay definition or the ICC definition, but it wouldn't matter. As soon as people heard the words "chronic fatigue syndrome", it would be, "Psychiatry is down the hall and to the left."
This third point is too bad, because NEIDS was a very reasonable name and apparently had a lot of support.
This brings me back to the name I proposed yesterday:
We want to convince people of the seriousness of the disease right off. So why not start with the word "Acquired"? The fact that this disease must not be congenital is already a requirement of several of the definitions. This gives us the same first word as AIDS, which is certainly taken seriously.
Putting "exertion" in the name does seem to have its benefits, although it would seem to be good to leave out the "intolerance" part for reasons already cited. So we'll use "exertion", or more specifically in this case, "exertional".
Now let's get to the heart of what this is. It's a neuro endocrine immune disorder (or disease), is it not? So put together, that makes Acquired Exertional Neuro Endocrine Immune Disorder (or Disease).
And now we've got something that's both quite descriptive and succinct: AENEID. And not only that, it's got literary class.
This is just something I came up with in a few minutes; I liked the acronym. But as I take a look at the acronym, I notice that the last four words in AENEID are identical to the first four words in NEIDS. There is certainly plenty of evidence that this is a neuroendocrine immune disorder, even if the stricter scientific interpretations would call it "preliminary". But this is supposed to be a temporary name anyway. Perhaps this name has real possibilities.
I figured that if we were going to take this really seriously, I'd have to take a close look at each word individually. The one problem is the second word - "Exertional". I put that in because it's essentially in SEID, and it serves as a reference to PEM. But what happens when you exert yourself? You get fatigued. Yes, the 'F' word. And then it's down the hall and to the left for all of us again.
So what's a better word to put in there (we don't want to lose this great acronym) that accurately describes our situation, but will not in any way be confused with "fatigue"? And of course, this word needs to start with 'E'.
The answer I came up with is "Enervating". According to Merriam-Webster's Medical dictionary, to enervate is "to lessen the vitality or strength of". That sounds right. There are no psychiatric or psychological meanings listed, and I've never seen any psychiatric or psychological usage of this word in medicine.
So that gives us AENEID: Acquired Enervating Neuro Endocrine Immune Disorder. That sounds pretty nasty, doesn't it? And yet the name is broad enough to that it can encompass everything from mild to extremely severe cases of ME/CFS. Specifically, something that's "enervating" sounds like it can easily leave a person bed bound - something no other proposed name directly implies. The fact that "enervating" is a present participle implies that this might get worse, as it often does. It does not exclude total enervation, which would be total loss of vitality or strength, and by implication, it means that this disease might be fatal, as it sometimes is.
If someone is asked what Acquired Enervating Neuro Endocrine Immune Disorder is, it can be explained simply on the basis of its title. No reference to chronic fatigue syndrome need ever be made. If someone is asked, "Is this the same as chronic fatigue syndrome?", the honest, simple answer is, "No."
I've chosen "Disorder" for the last word instead of "Disease" so that this could be called AENEID, AENEID Disease, or "the AENEID Disease", all without being redundant.
Consider the names of the following two diseases, simply on the basis of their names:
Acquired Immune Deficiency Syndrome
Acquired Enervating Neuro Endocrine Immune Disorder
Which sounds worse? The second one sounds like a monster of a disease that I'd never want to have. And let's face it, most of us with serious versions of this illness would agree with Nancy Klimas when she famously said that she'd rather have AIDS (with the state of treatment in 2009) than CFS.
So to me, this name seems to fulfill the requirements I delineated above. And as we have all seen, people will judge this disease on the name. This is one case where first impressions
really count, especially since many people won't look beyond the name. If someone has a better name, great! But this is my proposal.