News from WPI symposium: Name change to be proposed for XMRV

[Cort]

Cort's going to have to change the XMRV Buzz page to HGRV Buzz!

I dunno - doesn't have the same kind of, er, buzz to it!

No it doesn't! HIV refers to the organ system involved - immunodeficiency virus. Maybe they should wait until they figure out what XMRV is affecting. Dr. Mikovits has research stating its affecting the immune system..... Human immunodeficiency gamma virus==HIGV - or HIGR - not great but better than HGRV...theres gotta be some better acronym out there.

 

[Cort]

I like HGR. It is simple and easy like HIV. Many illnesses are named for their discoverer, so it could be called Silverman disease after Dr. Silverman at the Cleveland Clinic.
I'm just so glad I no longer have to say I have cfs.

I like HGR pretty much - nice and simple.

 

[pictureofhealth]

If it is renamed after Dr Mikovits, ie Mikovits Disease, (as someone has so rightly suggested) it becomes 'MD' for short - we'll all be MD's!!

 

[Cort]

I think we should make a list of possibilities and vote on them. Maybe we can come with something a bit more catchy.


HGARV - Human gamma retrovirus
HUGAR
???

They sure didn't have an easy list of letters to work wit - I'll give them that.

 

[jimbob]

HGR sounds better, isn't retrovirus one word anyway?!!!

 

[jimbob]

If we went with a dr., Silverman's disease sounds better, no offense to Judy.

 

[pictureofhealth]

Hi Cort - do we have any idea who the other scientists were who were invited/attended this first WPI Scientific Symposium? Do you think the WPI might make the list available?
It would be great to know who was involved at this exciting and early stage.

 

[Gemini]

I like HGR pretty much - nice and simple.

Or maybe HGV.... human gamma virus

Gemini

 

[VillageLife]

*silvermans
*HGV
I like those.:victory:

 

[leela]

Or you could say we'd been "HAD" for about 25 years. Thanks to Bill and the Weasel!

Oh good one! Hadn't even gone there with it!

 

[Sasha]

*silvermans
*HGV
I like those.:victory:

In the UK, HGV = Heavy Goods Vehicle.

We think we're a laughing stock now - wait til we're got HGV...

 

[Stone]

If we went with a dr., Silverman's disease sounds better, no offense to Judy.

Has anyone suggested Silverman-Mikovits Disease? I like it just as long as people don't start calling it S&M Disease.

 

[Forbin]

HGR sounds better, isn't retrovirus one word anyway?!!!

Not only is "retrovirus" one word, but "gammaretrovirus" is also one word.

Human Gammaretrovirus Disease? HGD?

 

[V99]

There are too many people attached to this discovery to name it after them. Don't forget Klein and the guy who ran the lab, also Annette and Peterson. Too many. But we can remember them.

 

[Gemini]

I think we should make a list of possibilities and vote on them. Maybe we can come with something a bit more catchy.

Agree...this time around we should weigh in with our choices!

Gemini

 

[Levi]

I kinda like CARV (Childhood Adversity Residual Virus) with an attendant disease entity of CARVE (Childhood Adversity Residual Virus Encephalomyelitis). . . It has an edgy sound to it. An an oxymoron moniker would be fitting for the schizoid body of research published so far on CFS.

I think we should make a list of possibilities and vote on them. Maybe we can come with something a bit more catchy. (snipped)

Maybe it can go on the poll. . .

 

[V99]

I think we should first see what comes out of the conference. It will change again at that point. Also, they are trying to name the disease based on science, which is needed to immediately communicate to doctors what this is. I would rather the name indicate to the medical profession the significance of this finding first.

 

[d1nFL]

HGRV... it's not as HaGgRaVating as CFS!

 

[taniaaust1]

Holy Name-Change Batman!

That's gonna screw up the campaign materials and no mistake! What about all those videos and new websites? Yet more domains to be purchased...hgrvglobalaction to set up...as if we didn't have enough to do...

We'll have to resurrect this thread as well:
http://www.forums.aboutmecfs.org/sh...D-name-to-something-else-NOW&highlight=stupid

And anyway I was looking forward to the release of the UK govt's secret X-files - "the H-files" doesn't quite have the same ring to it...

Yes, overall I'd have to say: unpronounceable, not scary enough, sounds too much like a truck.

It's always been obvious that the name would be changed (and may change more then once.. who knows this may not be the last of name changes).

I think the new name is far easier then the old one.. i have never been able to remember what the X in XMRV means everytime i get asked. I bet most here wouldnt remember off their heads what that X means.

Human Gamma Retro Virus will be far easier to remember and adding "associated disease" to the end is logically when it comes to refering to any disease it causes.

Yeah HGRV isnt as catchy looking as XMRV, but at least i will stop looking like a dunce everytime someone asks me what XMRV stands for.

We should all be happy that Wessely and cobuddies havent tried to name the new virus CFSV .

 

[taniaaust1]

I think we should make a list of possibilities and vote on them. Maybe we can come with something a bit more catchy.


HGARV - Human gamma retrovirus
HUGAR
???

They sure didn't an easy list of letters to work with.

Im actually finding it a bit rude.. like as if a parent named a child.. and then all the childs relatives go ... "i dont like that".

This is what i feel is being done here. Where is the appreciation and gratitude towards those who are trying to do the right things for us. Why arent they getting support for their choices? Im sure they dont want to hear that patients are unhappy with the name they are choosing to call the virus.

I personally think the patients shouldnt be trying to name this illness.. if we ended up naming it, just imagine the credilitiy that may have when our already disbelieving GPs and others discover that the virus was named by patients themselves rather then by science.
(i dont doubt the badder side of the media would talk about it) It may make it even slower for it to be accepted (just like we arent already accepted due to a bad name). Since when do patients usually name their own illness? (we need to become more like normal accepted medical things). I dont want to see XMRV or whatever they are going to seriously call it, be tainted by such a thing.

(eg could XMRV become that illness which is thought by doctors as something the patients have mostly made up.. after all they even named it themselves).
........

**thumbs up for a very scientific sounding name named by the researchers and those scientifically involved and who backs us**
A name there isnt medical controversy about.
........

It concerns me that patient groups pulling all kinds of different ways on the name issue, could end up having the consequence of others stepping in to get it named and it may end up being a name we truely hate. eg say if Wessely group ended up naming it .. chronic fatigue syndrome virus CFSV . CDC's and Wessely school power, should never be underestimated.

I think it is needed to back a scientific name (which may end up being changed again anyway due to what else they find out about the virus). Support the medical ones who are backing us.