If XMRV does turn out it is the cause of CFIDS.. I think "Mikovits Disease" is the suggestion i like most so far. Not to long a name to write down or remember and it would help to get things away from all the previous stuff.
the stupid name "CFS" should stand as a commemoration of our suffering and the psychosomatic obscurantism. In a few years we may read about chronic fatigue syndrome killing children in Africa and everyone will realize how stupid and dangerous the psychosomatics is. (And that it is good that Wessely and his henchmen are in prison. )
So far my favourite name suggestion has been WTF -brilliant!!! Thank you all for cheering me up with this
I'd like the term Neuroimmune to be included &thought of NADS Neuroimmune Acquired Deficiency Syndrome. But that sounds ridiculous!! plus I'm female so I have no nads!! :tear:
I really don't mind AND as a name as whatever acronym is used it will need explaining to the general public &at least AND does not have any negative associations.. although it's certainly far from perfect!
I like the idea of a name based on the pioneers who discovered XMRV just not sure how that would work.. would be great if we could have both an acronym and a serperate name that honours the pioneers but maybe that would just get confusing :tongue:
ANID is another one Aquired NeuroImmune Disease...
Hmmm not getting anywhere with this really :ashamed:
Really hope we do get a name change &a decent one though!!!
XMRV is a bit of a prob what about HNV instead Human Neuroimmune dsyfunction Virus, you know ya dealing with scientific terms here and unlike the original XMRV is easily explained &remembered &of course closer to HIV (Human Immunedeficiency Virus) so people will understand the similarities etc..
As for the second part, I think AND is the only way forward.
I therefore propose HNV-AND.
and as for why a new name; public perception, acceptance &understanding is why. If we have an appropriate name that is self explanatory (&actually correct for our disease) we would have to fight all the time to explain ourselves to normals.
Gona leave it at that now, bigger brains than me will be the ones to decide on such things..
I wish I could believe you're right. My father, and now my husband, have to remind me repeatedly, "Never underestimate the power of ignorant people in large numbers." Like it or not, if Fatigue is in the name, "tired" is in their minds. A vast majority of people won't even know (or care) about a causal link. And of course the detractors will certainly be playing the "Sure it's a retrovirus, but it's not that serious" tune.
I think that changing the name would make it easier for people to ignore past injustices though. I'm also worried about what will happen to those who do not test positive for XMRV. It seems that there are seriously ill people with CFS who are not testing positive, and I like the idea of maintaining some sense of camaraderie with them (assuming I'd test positivie if the XMRV link hold up... maybe I'll be one of the ones left behind!)
I'd want to keep 'CFS' even if it did make things harder for us. Things would still be a lot easier than now.
Anyway - we're probably getting a bit ahead of ourselves now. Even if all the WPI's work turns out to be right, I can't imagine the medical community caring less about what patients think their illness should be called!
I vote for WTF. It effectively captures the whole illness experience.
"WTF do I feel so exhausted?"
"WTF is going on with my body?"
"WTF do you mean there's nothing wrong with me?"
"WTF? Graded WHAT Therapy?"
"WTF happened to my life?"
"WTF can't you just cut the nonsense and get on with the real research, already?"
I'll add any new WTF experiences to solidify the position that WTF Disease is the most descriptive name for our illness. You think it up, I'll add it.
Truly, we must change the name NOW, because it's so difficult to explain to a physician that there have been new ground breaking research findings," See Doc, there's this relatively novel retrovirus called XMRV and...no, not a virus, it's a retrovirus, Doctor, as in HIV, HTLV..." And then the doctor starts to discuss with you his vast amount of disinformation about EBV and how it turns out that it's not really the cause of your "chronic fatigue", and how "chronic fatigue" is really a wastebasket diagnosis and bla, bla, bla. The fact remains that no matter what they eventually find that causes this thing, the doctors, employers, family members and general public never hear the word "syndrome" and only hear and use the term "chronic fatigue" which means "tired a lot". It truly is like calling AIDS "Chronic Unwellness Syndrome" which is then shortened to "chronic unwellness" which means "sick a lot". No, not only does the F-word have to go, but so does the C-word. Of course it's chronic, so is MS, Diabetes, CHF, Alzheimers, and WTF? If it were not chronic, it would not be as much of a problem now would it? The whole term Chronic Fatigue Syndrome has go. It creates more harm than having NO name at all and adds unnecessary suffering to a group of very sick people who can stand it no more! They even call it "chronic fatigue" half the time at the CFSAC meetings in Washington! And these are supposed to be the people who have a clue about this disease. No, we MUST change the name, even if it's temporary. It won't muddy the waters any more than they already are. I think the next time I hear a doctor or so-called expert refer to this as 'chronic fatigue' I'm going to come unglued. I don't see any need to wait. We've waited long enough. How about "AIDS-lite" any takers?
Seriously, the name is not going to change to XAND, NEIDS, or X-AIDS right now, but I believe the time is ripe to shove aside the F word. We just need to get rid of the common use of the term chronic fatigue syndrome ASAP because every time someone shortens it to chronic fatigue I envision Wessely grins and knows he is shooting us in the kneecaps.
CFS/ME is gaining traction and the English MRC recommends its use. The biological researchers have already recommended the name to ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The acronym ME/CFS should keep reporters from shortening it to chronic fatigue. The simplicity is that we only have to resolve to informally banish the use of CFS in this forum and in all our other writing, and spread the word. Please use the term ME/CFS, and gently remind others to edit their posts and not use the F word when you see it. If we keep shooting ourselves in the foot by using the F word among ourselves, I don't see how we can expect others to change.
Let's resolve an issue instead of putting out 100 good ideas and then debating them to death.
Urgency, most of us have a neurological illness probably caused by a retrovirus, and we are an opportunistic illness, car accident, hospitalization, or other stressor away from our illness worsening, getting cancer, or dying. Urgency, our lives depend on it.
Now THAT's what I'm talkin' about!! Thank you Doogle! I second the motion to adopt the term ME/CFS or ME/CFIDS (which rolls off the tongue more readily for me) and discontinue using the F-word. Thank you!
I know, I know, and I don't want to damp down your fun. Sometimes I get grumpy when I think of how close to treatments we were in the late 80s and early 90s and wonder if the patient community had been more demanding then like the AIDS patients were, that many of my ME/CFS friends might be still be alive.