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

[Mark]

What about CFSMEXMRVXANDHGRADHGRV?? sounds good to me, make it so.

I've checked on google and CFSMEXMRVXANDHGRADHGRV is available, no hits - unlike HGRV which is already in use for several other purposes. So I vote CFSMEXMRVXANDHGRADHGRV.

 

[Wasbeer]

The Media will have a bit to do with what it get's called in the end as well. Some illnesses end up being "called" after the people instrumental in bringing them to light. Personally have Mikovitz disease is fine with me. (grins)

What about Judy Flu? In stead of Yuppie Flu ofcourse

 

[V99]

I've checked on google and CFSMEXMRVXANDHGRADHGRV is available, no hits - unlike HGRV which is already in use for several other purposes. So I vote CFSMEXMRVXANDHGRADHGRV.

Why no X on the end?

 

[alex3619]

Hi bullybeef, I have wondered about animal vectors before. If ticks, why not fleas and mosquitos? That would be an even better explanation, that many insects are vectors, and would bring it home to people that it can be more easily transmitted. It seems the more we discover, the more research we need! Bye, Alex

It also makes pretty good sense to me that ticks could pass XMRV (HGRV) on to another person.

 

[julius]

Whatever the name is we can have a name of our own choosing if we like. Take ALS for example. That one has the official 'scientific' name ALS, but is most often referred to by it's 'common' name, Lou Gherig's disease.

So we could have HGRD, but call it Mikovits' Disease. I'd be down with that.

 

[LJS]

Whatever the name is we can have a name of our own choosing if we like. Take ALS for example. That one has the official 'scientific' name ALS, but is most often referred to by it's 'common' name, Lou Gherig's disease.

So we could have HGRD, but call it Mikovits' Disease. I'd be down with that.

Lou Gehrig was a baseball player who came down with ALS. Mikovits is not sick so I do not think Mikovits' Disease fits well.

 

[leaves]

Yeah so i dont know whether its an honor to have disease named after you??

 

[alex3619]

Hi Dont discoverers get to name organisms? The name of the disease is open to debate, but I suspect that XRMV is now HGRV for good, unless the discovers change their mind. Bye, Alex

 

[LJS]

Another note, Mikovits did not discover XMRV, she found it in CFS patients. She deserves a lot of credit but it does not really make sense to name it after her.

 

[Dr. Yes]

That's quite plausible except there has to be something that has a strong propensity to awaken the sleeping dragon. Until we have the proper epidemiology, it's anyone's guess. When you listen to "survivors" of Incline Village something tore through that community in a particularly virulent way. Did they all have latent XMRV? There is much to learn.

Yeah, we have to bear in mind that causality has not been established yet, that certainly not everyone with ME/CFS is XMRV (or whatever) positive by current testing, and that potential co-causal agents/factors have not been investigated. Although XMRV/HGRV/blah blah blah-V was found in a high percentage of ME/CFS patients tested by one study (and presumably by at least one other that is about to be published), more work needs to be done to clarify the nature of this apparent association. Also, as Akrasia noted, how it might figure into ME/CFS outbreaks like the Tahoe one is a big question mark.

 

[Wonko]

I vote for HAD - not many things make me laugh out loud these days but that did

 

[bullybeef]

Hi Alex,

Animal vectors could explain outbreaks more so than anything else. Bed bugs in hospitals globally, mosquitos in Incline Village*, head lice/cooties in schools? Could we even assume rats and bats are able to carry human XMRV/HGRV?

*Thinking about camping in Incline Village or Lake Tahoe this summer? ….but if you go in early July you might have to fight off the mosquitoes.
See: http://ezinearticles.com/?Great-Camping-Spots-in-Incline-Village-and-the-Lake-Tahoe-Basin&id=4636931

BB

 

[julius]

Lou Gehrig was a baseball player who came down with ALS. Mikovits is not sick so I do not think Mikovits' Disease fits well.

There are tons of diseases named after the one who discovered or first described them. Asperger, Reynaud, Kaposi, ...on and on and on.

Mikovits was the first to describe the connection between XMRV and CFS, so it would be totally appropriate.

 

[muffin]

"This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection."

This sentence caught my attention. Not Endogenous, meaning NOT due to ancient infection? So does this mean this virus is new?

Science people --- What does the above sentence mean please???

 

[alex3619]

Name change not really a bombshell?

Hi, the more I think about it, the more it seems the proposed new names are not that big a deal. What is important is the science that drove the change, and we are only guessing as to what that is. When it comes out, don't be surprised if we find there are many more than one or two bombshells here. HGRAD is an umbrella term, and they may already know there is a second (third, more?) gamma retrovirus involved, which might be why they are positioning this way. It may turn out that they are in the process of defining a whole new category of retroviral diseases, the encompass a spectrum - or the spectrum is actually caused by coinfections or genetics, and it is all one disease. Damn, this is all too interesting, I am definitely getting adrenal burnout but I dont want to stop getting new info either!

Bye
Alex

 

[LJS]

"This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection."

This sentence caught my attention. Not Endogenous, meaning NOT due to ancient infection? So does this mean this virus is new?

Science people --- What does the above sentence mean please???

Since Retroviruses intregrate themselves into the host DNA he is saying XMRV is not something that everyone has in there DNA from a long time ago, only select people are infected with it.

 

[pollycbr125]

There are tons of diseases named after the one who discovered or first described them. Asperger, Reynaud, Kaposi, ...on and on and on.

Mikovits was the first to describe the connection between XMRV and CFS, so it would be totally appropriate.

I agree My son had a wilms tumour which is named after Dr. Max Wilms, the German surgeon (1867–1918) who first described this kind of tumor. So as Judy found the connection to me/cfs I still think Mikovits Neuro Immune Disease ( shortened to Mikovits disease )

 

[Dr. Yes]

Hi Doc,

How did Reeves and Wessely manage to get their way in regards to changing ME to 'CFS'?

Hey bullybeef,

Reeves had nothing to do with the initial naming, actually, as it was an earlier CDC administrative decision. The CDC had the clout to give an official name to an as-yet "unidentified" disease; the problem is that they chose to ignore the history of ME research and apply the term CFS to the disease that was spreading in the US as if it was a previously undefined entity. I think they got away with it back then because ME was not that well-known (especially in the US), and because they initially claimed (along with Straus at the NIH) that the cause was likely EBV, then backed off and redefined the illness as a vague syndrome. At the time, very few were willing to challenge them, especially as they have much of the official responsibility for tracking epidemics in the US.

Now, however, the situation is different; a great deal of research has been done under the name "CFS", a great deal of confusion has been created by its various definitions (two of which seems to suggest that viral etiology is exclusionary for CFS!), the disease 'entity' is popularly known, and the CDC itself is taking a lot of flak over naming it in the first place. This time, it will take more than the CDC alone to make a name change, if that becomes necessary; others will have a say.

Wessely et al may have been able to modify UK policy on naming thanks to political pressure, but they couldn't alter the official ICD coding. (Not yet, anyway...) The reason they were even able to accomplish this is because of the common use of the term CFS and the CDC definitions in biomedical research.

 

[Martlet]

Thank you for the information, hopefully we'll be post grad's one day....

:tear:
That is really, really good, Sunshine.

 

[V99]

"This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection."

This sentence caught my attention. Not Endogenous, meaning NOT due to ancient infection? So does this mean this virus is new?

Science people --- What does the above sentence mean please???

LJS is right

Endogenous means it is a part of the human genome, exogenous means it's not ment to be there. It is foreign.