Okay so can we PLEASE change the STUPID name to something else NOW???

dannybex

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Ids / cids

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!
ME, although probably accurate in 70-80% of cases, might not apply in others, and again, might be something that complicates it for some people -- if you use the acronym. Because then people might say (like the opera singer...get ready for the bad pun...) "Oh, it's all about ME-ME-ME-ME-ME!")

Seriously, I still say your original idea -- IDS, or even CIDS (leaving out the f-word) would be great.


And even more seriously...don't hold your breath. Regardless of what happens with XMRV, it will still take probably 2-3 years to get the name changed. Just like anything government related...it ain't gonna happen 'now'. :(
 

*GG*

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Personally, I'd go for the traditional method of honouring the person who finally defined what it really is. My vote is for Mikovits Disease.

I'm not keen on acronyms. They're OK for the military and computer programmers, but... you know, this is an illness. We cannot make a list of all its symptoms to compose the title.
Sorry, Don't think I would want this disease named after myself, just me? Are any cancer's name after there discoverers?

One of my Drs once used CFIDS, which does sound better than CFS, still fatigue though. About as good as PEM in some people's view. My disease has changed so much over the years, it appears to me that PEM and fatigue are going to be my biggest battles in the near future. Pain is residing, getting a handle on my sleep, hopefully this does not slip, had trouble getting to sleep last night! Have not been as active as I was last year, so if/when I ramp that up, who knows what will be my biggest nemesis. I would figure PEM and fatigue?!
 

pollycbr125

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Sorry, Don't think I would want this disease named after myself, just me? Are any cancer's name after there discoverers?
yes my son had a Wilms Tumour named after the German doctor, Max Wilms [1867-1918] who wrote a medical paper on children's kidney tumours in 1899.

oh thanks for the compliment by the way ;)
 

Stone

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Caposi's Sarcoma and Hodgkin's Disease are also cancers named after discoverers. Lots of diseases are named after their discoverers. But I wonder what Elaine DeFrietas' retrovirus was or is. If it's XMRV, then she actually discovered it. That retrovirus of Dr. DeF keeps bugging me in the back of my mind. I've read it's not XMRV. Well okay fine, but what is it? Where did it go? If it's not XMRV retrovirus, then what retrovirus is it? How do they know it's not XMRV if they don't know what it is? I'd love to be enlightened on this, so I can put it to bed in my mind.
 

camas

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But I wonder what Elaine DeFrietas' retrovirus was or is. If it's XMRV, then she actually discovered it. That retrovirus of Dr. DeF keeps bugging me in the back of my mind. I've read it's not XMRV. Well okay fine, but what is it? Where did it go? If it's not XMRV retrovirus, then what retrovirus is it? How do they know it's not XMRV if they don't know what it is? I'd love to be enlightened on this, so I can put it to bed in my mind.
Cort wrote about this at length back in January. I need to go back and read it again myself as it was all rather confusing.
 

ixchelkali

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Sorry, Don't think I would want this disease named after myself, just me? Are any cancer's name after there discoverers?
Sure: Karposi's, Hodgkin's, Burkitt's, Waldenstrom's. I know what you mean, but for scientists it's an honor, a kind of immortality. That's also why we don't get a say in what they call the virus: the discoverer traditionally gets to name it, so the Silverman team got to choose.

There was a big fight over naming what is now HIV. The French researcher who discovered it, Dr Luc Montagnier, named it LAV. The American who discovered it,Dr Robert Gallo, named it HTLV-III. Traditionally, Dr Montagnier would have gotten to pick the name, but Dr Gallo dug his heels in. He was with the NIH, and they have clout in the scientific world. They compromised and called it LAV/HTLV-III for a while. In the end, an international committee had to settle the dispute and they avoided the whole mess by calling it HIV.
 
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Glad you guys like my NADS... erm I mean my name suggestion obviously :ashamed:

I like the WMD idea, wish we had some of those -would definitely get things done quicker! :innocent1:

Originally Posted by Stone
But I wonder what Elaine DeFrietas' retrovirus was or is. If it's XMRV, then she actually discovered it. That retrovirus of Dr. DeF keeps bugging me in the back of my mind. I've read it's not XMRV. Well okay fine, but what is it? Where did it go? If it's not XMRV retrovirus, then what retrovirus is it? How do they know it's not XMRV if they don't know what it is? I'd love to be enlightened on this, so I can put it to bed in my mind.
I've also been thinking about DeFrietas, I really want to know what her discovery was &what the significance of her recieving the funding (that she should have had!! :Retro mad: &ME/CFS should have had!! :Retro mad: :Retro mad:) needed to continue her work would have been...

Can anyone who knows about this please explain it in a simplified brainfog friendly way?

Thanks all xx
 
I

I'lltryagaintomorrow

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Where's the fairness? That's so funny! thanks, I needed a laugh tonight.

Even though I love the humor in WTF, I vote ME CFS.

By the way, I never liked Bryant Gumble.
 

dipic

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Actually the Whittemore Peterson Institute already came up with a name, which is XAND (XMRV Associated Neuroimmune Disease).

I'm not sure if it's pronounced Zand or X-And. I've been calling it Zand.
I pronounce each letter: X-A-N-D, like one would do with XMRV.

In any case, to the OP; no, unfortunately we can't, yet. And won't be the ones who make that decision likely. Once there is a cause or causes found and proven for some or all of CFS, only then will we get an appropriate name (or names.)

To most people I just say I have an idiopathic nuero-immune disease. To anyone who already knows I have CFS, I usually refer to it as ME/CFS/WTF when speaking about it.
 

lucy

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WTF definetely is very precise and made me laugh, thanks, I will use it from now on when speaking about my CFS. Being a fan of scary movies I would also accept something like conscious zombie virus, CZV. However we have to think of something that is equally worrying as XMRV is, because the goal is to put an end to thinking that this is something we could change, if we just wanted. Whenever people say me it is psychological, my reply is that then I should be assigned a psychological treatment that works on people with CFS and I will be more than happy to undergo it. I would even agree to have eshock treatment if it is supposed to help me.
Nevertheless XMRV (as the main cause) is still something to be proved, isn't it? What about MFV as mito failure virus? I imagine we can only cling to sth that is sure at the moment. Even if it is an early time to discuss the name, I think it is not a bad idea to overview the current options and have a mood boost with such as WTF.
 

justinreilly

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Cluster-F#@k Syndrome

Wow! I love this thread. Thanks for great ideas!

Stone- I like WTF. I've called it WTF sometimes- but i use it to refer to the Reeves definition since that definition describes Wichita Tired and Fatties (although they're focusing on the Georgia cohort now, not Wichita anymore). And Where's The Fairness is a good one for us too!!

Along the same lines I sometimes say I have CFS which stands for Cluster-F#@k Syndrome.

In general i'd really rather use 'disease' than 'syndrome' so i don't like NEIDS that much anymore and it does sound like "NEEDS" which someone astutely commented didn't sound that great.

I like ME or ME/CFIDS. I refuse to say "CFS" so i don't use ME/CFS.

I'm going to start using ME/XAND also. I think X-AIDS or AIDS-X are great too. Never thought about that. that would really get people's attention and that's what we need desperately. Actually as I write this I am loving it more and more and i'm going to try it out.

Other diseases that are associated with XMRV can be XAND-2, XAND-3 or XAND- ASD, XAND- FM etc. (and we can then be XAND- ME or XAND- 1 or whatever) so i don't think this is any reason not to call it XAND.

The main point for me is call it whatever you want, but please, please never call it "CFS"
 

justinreilly

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AX

Still liking AIDS- X. "AX" is catchy imo. We really could use something catchy to catch on fast and overcome all the "CFS" inertia. also ME/AX pronounced "M E ax" or "me ax" is still brief and not too clunky.

What do you guys think?
 

justinreilly

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I've got no name breakthroughs as of yet, but I am thoroughly enjoying this thread. The thread title is basically something I say to myself at least once a week while I figuratively bang my head against the figurative wall.

Cannot.stop.laughing at all the variations of WTF and love the story of mis-sending it to the lawyer--ha!!

I'm on the side of a new name now while the iron is hot and adding/changing later to include XAND or some variation when more is known. Kind of like how AIDS became HIV/AIDS and how there are cases of AIDS that are HIV-.
As you may know HIV negative AIDS is a small subset of ME/CFIDS.
 

justinreilly

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Hmmm... you could be right.

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!
Esther- I think this is a dangerous attitude. We have to take a stand against "CFS". If you want an established, accepted name that does not specifically exclude XMRV negative people then please use ME. I do.