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

[wingfingers]

New name not necessary - we already have a good one.

"Because of all of this, and because of the desire to begin on the right
track, the new name of the virus is HGRV- Human Gamma Retro Virus.
The illness caused by this infection is named HGRAD- Human Gamma
Retrovirus Associated Disease."
Joseph J. Burrascano Jr. M.D.

WTF is Burrascano playing at? We already have one clumsy name for the
actual virus in the term "XMRV".

And it's very presumptuous of him to state that "the new name IS . . "
when he should say "the PROPOSED new name could be . . . "

As for The Disease of A Thousand Names - that makes it now 1,001.

We simply don't need yet another new name. We have a currently-used,
popular, easy-to-say, and accurate, name for the disease, which most
people outside the USA are familiar with. It's "M.E." This is its original
name as used in the USA and even then preferred by patients.

Just drop the bastard term "CFS" from any future writings.

Why want to change it? Why propose an answer to a problem where no
problem exists?

Burrascano is a well-respected Lyme Disease doctor, but he has had
nothing to do with M.E.

Lyme is an infectious disease caused by a bacterium, Borrelia, related
to Syphilis, with many strains, which can lead to a symptomatology which
may imitate virtually any other disease. Especially those of the nervous
system.

M.E. is an infectious disease caused (apparently) by a virus, XMRV, related
to the HIV of AIDS. It affects the immune system and mainly the nervous
system.

The symptomatologies of these two separate diseases can overlap or be
identical in some areas which can make a clinical distinction
difficult. And of course some people may have both diseases. Roll on
better blood tests!

I like the term Human-Associated Gamma-Retrovirus Infectious Disease -
or HAGRID for short - as per the character in the Harry Potter films.
At least you can pronounce it and remember it.

You may find you have to leave room for subsequent discoveries of
related viruses, perhaps causing other neuro-immune diseases - like
MS, GWS, FM ad inf. Of course they could be simply called XMRV-1,
XMRV-2, etc. The term HGRD is not good as it could apply to any of a
number of these diseases.

wingfingers

 

[Jackofit]

Dr Yes is right!

Except that the suffixes 1, 2, etc. usually refer to viruses that are very closely related, such as HTLV's 1 and 2. Gammaretroviruses are much larger group with far more diversity; also, this classification would get problematic if major genetic variants of XMRV - or "HGRV" - are found (those would normally get the type 1, 2, etc. designation).

Personally, I think HGRAD just sounds silly. C'mon WPI & friends.. you guys KNOW how long we've waited for a cool name... give us a break!! HGRAD-N-ME or whatever sounds like the place in the library where they put the oversize books.

Dr Yes, thank you! That's the kind of straight talk I like to hear, HGRAD is patently absurd and doesn't make sense in regard to the diversity of gammaretroviruses. It doesn't make sense and there must be more to this than we are being told. I don't even know who that Burroscana is but I know his spin doesn't make sense and why he is the spokesman for this unofficial announcment?

Dr Yes if you can elaborate more on the science of retroviruses and this strange political development that would be a good thing.

 

[thegodofpleasure]

I suspect that the lack of a good mouse model has been part of the problem.

This has been posted on mecfsforums :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC33522/pdf/pq000802.pdf

The New Zealand Black (NZB) Mouse looks like a very good model to me !

The author, Dr. Jay A Levy, http://ari.ucsf.edu/science/scientists_levy.aspx is a distinguished AIDS researcher.

Why didn't they make the connection to ME/CFS back then ?

 

[calzy]

Really People.....I dont give a s#@t what they call it..get us fixed:Retro mad:

 

[Kate_UK]

Then there's the issue of naming the virus after what it causes. We may not know, at the time of naming, everything the virus does, so a cause-based name could become obsolete or incorrect.

That seems reasonable.

 

[Jackofit]

Wingfingers I agree totally that ME was fine just the way it was for decades before CDC came along and spun a story about CFS which has caused us untold grief ever since. Some people are saying that the retroviral cause was a factor in the change to CFS which has never described the disease we suffer from.

XMRV is just the name of the retrovirus and that doesn't affect the name ME, but to ignore that and change that to the weird HGRAD is very strange.

 

[bullybeef]

Seriously ? Is that doctor crazy?? She should be happy, she has such responsible patients and congratulate you . I think that's exactly what they have been telling people for 20 or so years now, that they should do?! Now that's a doctor where they should look at wheter she should have a licence.

I understand where you're coming from eric, but I have known my GP since I was a child. She's looked after the majority of my immediate family, and she is very empathic and sincere. She just probably thought I wasn't in a HIV risk category. I wasn't sick at that time, and was a typical twenty something, where I rarely stayed in long standing relationships. I was actually shocked that the person I was seeing at that time asked me to be tested. No one else ever did, not even my wife.

I did speak to my friends and family about this test at the time, and many of them suggested the same as my GP.

My GP believes that XMRV maybe proven the cause of ME, and although I have stated my worries that the CDC are playing silly beggars, as they did in the 80's and 90's, she's confident that the science will win through. She a damn sight more confident than my consultant whom is completely dismissive of XMRV. The last time I spoke to him, he quote the regurgitated BMJ Plos one study as though it was gospel.

I certainly know whom I trust at this time.

 

[Jackofit]

This has been posted on mecfsforums :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC33522/pdf/pq000802.pdf

The New Zealand Black (NZB) Mouse looks like a very good model to me !

The author, Dr. Jay A Levy, http://ari.ucsf.edu/science/scientists_levy.aspx is a distinguished AIDS researcher.

Why didn't they make the connection to ME/CFS back then ?

They did in 1987 and that is why the CDC changed the name to CFS. Have a look at CFSCentral blog, topic: Commotion in the blood, timeline and bloodline, under 1987!

 

[bullybeef]

I am surprised they haven’t discussed a acronym that you can say, like AIDS. I can understand HGRV instead of XMRV, but why not something like GRAID or GAID rather than HGRAD? I really believe associating this with AIDS isn't a bad thing. It is 23 years since the AIDS advertising campaign, and for many people alive now, it is going to be completely new.

The main reason for the AIDS campaigns were to promote safe sex, and the most promiscuous age groups are probably 18-35 year olds. So, any new campaign adverts would be to target to a completely new generation.

Many of us have suffered from an ignorant type stigma for years, and I doubt the general public finally being aware of our condition, whatever its name becomes, could be any worse than that.

 

[eric_s]

I understand where you're coming from eric, but I have known my GP since I was a child. She's looked after the majority of my immediate family, and she is very empathic and sincere. She just probably thought I wasn't in a HIV risk category. I wasn't sick at that time, and was a typical twenty something, where I rarely stayed in long standing relationships. I was actually shocked that the person I was seeing at that time asked me to be tested. No one else ever did, not even my wife.

I did speak to my friends and family about this test at the time, and many of them suggested the same as my GP.

My GP believes that XMRV maybe proven the cause of ME, and although I have stated my worries that the CDC are playing silly beggars, as they did in the 80's and 90's, she's confident that the science will win through. She a damn sight more confident than my consultant whom is completely dismissive of XMRV. The last time I spoke to him, he quote the regurgitated BMJ Plos one study as though it was gospel.

I certainly know whom I trust at this time.

I don't know, i'm not a doctor, but i always thought one should get tested for all sort of things before you do something unprotected.
And an insurance company would never know that you've taken the test. Of course, if you want to sign a contract you will probably have to declare what illnesses you have and there a HIV+ person would have to declare that. But i don't see how a doctor would prefer that HIV+ people get cheaper life insurance over HIV+ people getting diagnosed and treated and not infecting others?
Well anyway, if she's a good doctor, it's good you have her.

 

[pictureofhealth]

Really People.....I dont give a s#@t what they call it..get us fixed:Retro mad:

Totally Calzy! Was just thinking the same thing. Can't get my head around all these initials.
(But just as long as its not CFS!)

 

[grant107]

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.

 

[shannah]

I am surprised they haven’t discussed a acronym that you can say, like AIDS. I can understand HGRV instead of XMRV, but why not something like GRAID or GAID rather than HGRAD?

I'm a bit puzzled by the same thing.

Also:
HIV = Human Immunodeficiency Virus
AIDS = Acquired Immune Deficiency Syndrome
HTLV = Human T Lymphotrophic Virus
HGRV = Human Gamma Retro Virus
HGRAD = Human Gamma Retrovirus Associated Disease

HGRV & HGRAD sound just a little too blatant for my liking. Every time someone asks what it stands for you'll be very blatantly announcing you're infected with a retro virus. No sugar coating or downplaying that term. Further room for stigmatization and having people keep their distance. Why does it have to specify retrovirus when the others don't. If this sticks, I can see myself making up my own term. Anybody else have the same feelings on this?

 

[VillageLife]

A lot of people are going to call this the ME virus for a while, or maybe the CFS virus. I think its important they pick a strong name and fast!

 

[bullybeef]

I'm a bit puzzled by the same thing.

Also:
HIV = Human Immunodeficiency Virus
AIDS = Acquired Immune Deficiency Syndrome
HTLV = Human T Lymphotrophic Virus
HGRV = Human Gamma Retro Virus
HGRAD = Human Gamma Retrovirus Associated Disease

HGRV & HGRAD sound just a little too blatant for my liking. Every time someone asks what it stands for you'll be very blatantly announcing you're infected with a retro virus. No sugar coating or downplaying that term. Further room for stigmatization and having people keep their distance. Why does it have to specify retrovirus when the others don't. If this sticks, I can see myself making up my own term. Anybody else have the same feelings on this?

I doubt many people even know what a retrovirus is.

When the XMRV news broke last year, I phoned NHS direct, and I spoke to a NHS nurse and asked her what their advice is on this new retrovirus XMRV. She replied, what's a retrovirus?!

 

[VillageLife]

what's a retrovirus?!

oh noooooooooo!!!!!!!!!!!!!!!

 

[capemark]

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.

How about HG-RAD - sounds like a radical Hi-definition format!

 

[bullybeef]

Mmmm...I wonder if I am XMRV ready?!

 

[Seeker]

Thanks LJS & others who've commented on this thread that they also have Lyme. I tested + for Lyme (PCR & culture, making no antibodies detectable on Western blot), both kinds of ehrlichiosis, babesiosis, bartonella, EBV & CMV (no XMRV test yet). Had near total remission for 4 yrs then relapsed Feb 2008 after ~6 mos of prolonged, unavoidable stress. Many in my family have symptoms (eg, son had fatigue for yrs - but he also had EBV & babesiosis, known to cause fatigue; Dad's beaten prostate cancer, etc) consistent w/XMRV. Just really glad everyone's sharing info

 

[dannybex]

Agreed...

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.

Completely agree. Keep in mind that many people on this forum alone tested negative yet were/are (in some cases) just as severely disabled as those who tested positive. This fact is ignored repeatedly...

HGRAD-N-ME or whatever sounds like the place in the library where they put the oversize books.

LOL. :Retro smile: