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

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[JillBohr]

Hagrid!! (Harry Potter character)

I am going with Hagrid. Love it!

 

[bullybeef]

Hey bullybeef,

R and W had nothing to do with it, 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.

Thanks for that Doc. Reading a little about ME, I have obviously gravitated more toward it's definition. But it does seem that CFS has slowly evolved into the old medical term neurasthenia, and drifted from the ME term.

I would like to believe Alter & Lo findings will ultimately prove the association with ME/CFS, and the name change won't benefit the CDC as way of a scapegoat. But here's hoping. I also believe this name change concludes that they know XMRV is directly causing disease. Maybe they are just unsure how.

BB

 

[Sam Carter]

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

Out of pure spite we should insist it is called Wessely-Reeves Disease.

Imagine: the first disease in medical history to be named after those who didn't believe it existed.

Wessely & Reeves become synonymous with a particular kind of idiocy and exemplars to future clinicians of how not to behave.

I could live with that....

 

[ixchelkali]

Good! Weve already had people who know diddly belittling XMRV and rolling their eyes about people getting a mouse virus. The Mickey Mouse disease jokes were sure to follow. Besides, people would be thinking X-files, and I dont want them putting me in the same box with the UFO-sightings, thank you. I think Human Gamma RetroVirus will be taken more seriously. Plus it's much more discriptive of it as a disease agent. Like Human Immunodeficiency Virus (they don't call it Human Simian-Like Virus), or Human T-cell Leukemia Virus. I think HGRV sounds grave. And NOW is the time to change it, before XMRV gets widely known and engrained in peoples minds.

H-Grad isnt that hard to say.

Otis, Hagrid? ROFL! :Sign Good one: But, NO! Bite your tongue. Haggard, more like, but thats way to close to the f-word.

Best of all is if we get the scientific community on board to ditch the f-word. At last! I frankly dont care too much what they call it if we get rid of that.
Somebody: What are you sick with?
Me: Um, er, well, Myalgic Encephalomyalitis.
Somebody: Whats that?
Me: Well, um, its also known as chronic fatigue syndrome.

I just Googled HGRV to see what else it might stand for and its not much used. Theres a proposed retirement village that may be wanting to re-think their name soon, and maybe theyll sell their HGRV.org domain. Then theres high gastric residual volume, but I dont think thats widely used.


The really good news in this is that Dr Burrascano is getting involved. I hope that means we may get the answer to the chronic Lyme disease issue, too. At least Im sure it means theyre looking at it.

Maybe well find the answer to post-cancer fatigue, too. I have hopes of this solving a lot of medical mysteries eventually.

 

[ixchelkali]

Holtorf Clinic will be buying "HGRAD" and "HGRV" Google Ad keywords in 5...4...3...2...

"Suffer from HGRAD? We Can Help!"

Too true!

 

[urbantravels]

Ha ha, ixchelkali. I do almost the same thing, except I usually skip the step where I try to get someone to comprehend "Myalgic encephalomyelitis." Isn't it great having a diagnosis where you're embarassed to utter its name?

 

[eric_s]

[...]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. [...]
Bye
Alex

Hi Alex

I don't think so. If they knew another human gamma retrovirus, then it wouldn't make sense to name this one "Human Gamma Retrovirus", without a number. Or what do you think?

Eric

 

[eric_s]

Ha ha, ixchelkali. I do almost the same thing, except I usually skip the step where I try to get someone to comprehend "Myalgic encephalomyelitis." Isn't it great having a diagnosis where you're embarassed to utter its name?

Yes, i usually wouldn't even say the name, only to friends or doctors. I usually just said how i feel and that it's probably caused by a virus which is now gone. Because of the theory that EBV causes CFS and i've had EBV. I knew it's probably not like that, but at least people will take it seriously. On the other hand, now it looks as if it might not have been so wrong, maybe XMRV needs a trigger to cause CFS and EBV might do that, as some people suspect.

 

[Dr. Yes]

I just Googled HGRV to see what else it might stand for and it’s not much used. There’s a proposed retirement village that may be wanting to re-think their name soon, and maybe they’ll sell their HGRV.org domain. Then there’s “high gastric residual volume,” but I don’t think that’s widely used..

Ah, but you missed one.. the plant virologists beat 'em to it!:

FITOSANIDAD vol. 13, no. 1, marzo 2009

PRESENCIA DE HIBISCUS GREEN RINGSPOT VIRUS (HGRV) EN CUBA

[Presence of Hibiscus Green ringspot virus (HGRV) in Cuba]

Gloria Gonzlez Arias, 1 Elliot Watanabe Kitajima 2 y Alina Beltrn 3

Recognized for some years only as vectors of viral diseases in a limited number of species of mites belonging to the superfamily Eriophyoidea [Proeseler Oldfield, 1996]. Recently Geijskes species Brevipalpus phoenicis, Brevipalpus californicus and Brevipalpus obovatus Donnadieu Banks, family Tenuipalpidae emerge with this feature, Preferably B. phoenicis is responsible for the presence of viruses in citrus, coffee and ornamentals such as Citrus leprosis virus (CiLV-C), Coffee ringspot virus (hamstring), Hibiscus green ringspot virus (HGRV), Hibiscus chlorotic spot virus (HCSV ), among a total of 24 diseases [Kitajima et al., 2003], which usually produce symptoms of chlorotic or necrotic spots on their own hosts, and that even today are scattered throughout North, Central and South America.

Oddly, that is the only mention of this virus that shows up on Google, so perhaps it can safely be stolen. But then we would have to contend with a lawsuit from a Dutch company:

"HGRV is a partnership of experienced consultants and managers, founded in 1991. HGRV consultants have filled executive positions in large organisations and have years of experience in training and development. We are no-frills, results-orientated people.

You could use the last line as your new signature, Ix!

 

[ixchelkali]

The psychiatric profession has way too many customers, (patients) and way too much influence and power to just flush CFS label down the toilet. CFS will remain, and GRAD could become a new disease causing infection that the CDC can boast they are world leaders in, world beaters in, researching and advising the public all over the world. (ego trip much). We, the patients, know GRAD is actually neuro immune ME/CFS, but the public won't care or know and health profesionalls due to being professional won't use the name ME/CFS again for those with XMRV/HGRV.

I think they've been positioning themselves for this, with all the recent talk about sub-groups. That lets all the XMRV/HGRV positive people spin off into biomedical disease and they can still say they're right about CFS. More's the pity for all the people sick from neuroimmune diseases caused by other as-yet-undiscovered pathogens.

Leaving "murine" out of the name may also lessen curiousity about how a mouse virus jumped into the human population. I have had the feeling that the powers that be don't want that looked at too closely. I've even wondered (occasionally, when I'm in a conspiracy frame of mind) if that has anything to do with the UK's top secret ME/CFS files.

 

[Sunshine]

Maybe the plan is we're all in for a GRADuation ceremony with honours?

GRAD - Type 1 (Was our old label, neuro immune ME/CFS) - XMRV
GRAD - Type II (Was Lyme) - maybe yet to be revealed MULV?
GRAD - Type III (Ditto) - Ditto

Depending on the result of the GRADUal decline in health into specific diseases we get a type number next to our names?
Rather like being in a prison, except for us the rooms are bigger...

 

[ixchelkali]

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

Now there's an interesting thought. I haven't seen much (any?) mention of the possibility of this whatever-you-call-it disease being vector-borne. Are there any retroviruses that have an insect vector as part of their life-cycle? We really know almost nothing about the life-cycle of HMRV/HGRV at this point, or about transmission. If it were vector-borne, that could lead to some differences in geographic distribution. Hmmm, maybe it's time for me to read some more about veterinary retroviruses.

 

[ixchelkali]

"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???

I think they're saying that while it is endogenous to mice, it's not endogenous to humans, so it's better to leave that out of the name of the human virus.

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

I, too, thought it sounded like an umbrella term, perhaps for the various diseases they might be finding that have a high percentage of XMRV-positives. Speculating, I'd guess chronic Lyme, Gulf War Disease, multiple chemical sensitivity, maybe fibromyalgia, maybe austism... I'm thinking that maybe different triggers or insults might manifest differently, or maybe simply which cells it settles in.

And if they discover a new gammaretrovirus, no big deal. They simply become HGRV 1 and HGRV 2, like we now have HTLV I and HTLV II.

 

[ixchelkali]

Ah, but you missed one.. the plant virologists beat 'em to it!:

Presence of Hibiscus Green ringspot virus (HGRV) in Cuba

Ooohhh, Noooo!!!! I absolutely, flat-out refuse to tell people I have Hibiscus Green Ringspot Virus! :tear:

 

[ixchelkali]

Am I the only one wondering whether people will get HGRV and HGTV (the home and garden television channel) mixed up? Will we have people clamouring for an HGRV makeover?

 

[Otis]

[Presence of Hibiscus Green ringspot virus (HGRV) in Cuba]

That's a virus that grows on the paper band (ring) of certain high-quality Cuban cigars if the humidor isn't set just right. It's most easily detected by it's spotted greenish color with a faint fragrance of hibiscus.

Very rare, but it drives Fidel mad.

 

[Stone]

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.

I completely agree, and I've made a similar point on another thread. I really think (if we wish to do so) we can call it what WE want to call it, and let the doctors call it what they like. There are a whole lot of examples of this, where diseases have a common name and a more proper name. Rickets = Osteomalacia, Gallstones = Cholelithiasis, Bladder infection = cystitis or UTI, High Blood Pressure = Hypertension, and there are so many more that I could fill a page with them. And this is done in other instances as well. We no longer use the terms "midget" or "dwarf", we use the term "little people" because that is what they prefer. You rarely hear a person referred to as "retarded" anymore, but are more likely to hear the use of terms like "special" or "special needs".

The point is that maybe we aren't simply stuck with whatever name they (whoever they are) give our disease. That's how CFIDS became widely known as synonymous with CFS, and in many opinions ME too. The CAA simply started using CFIDS instead of CFS and there it was. Yes, we already do have way too many names, but IF we could agree in majority on a common name, we could simply start using it and it would take hold eventually, I think. We would have to be careful not to choose something that can backfire on us, but theoretically, we can call our disease what we like.

 

[Stone]

Am I the only one wondering whether people will get HGRV and HGTV (the home and garden television channel) mixed up? Will we have people clamouring for an HGRV makeover?

LOL No, you're not the only one. I was thinking the same thing myself. At least it's kind of catchy, since people have heard of HGTV.

 

[SA2]

The big news is that researchers seem to be finally getting a handle on this disease and perhaps a number of other serious diseases as well (and we can thank the WPI and the Cleveland Clinic for that) . I don't particularly care what they name the virus or the disease(s) it causes, however, I think any name without "chronic fatigue" as part of it would be a huge improvement since I believe that phrase trivializes the symptoms and net effects of the illness.