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

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

I am going with Hagrid. Love it!

 

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

 

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....

 

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.

 

Too true!

 

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?

 

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

 

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.

 

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

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:

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

 

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.

 

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...

 

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.

 

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.

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.

 

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

 

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?

 

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.

 

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.

 

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.

 

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.