Thursday, August 19, 2010

A retrovirus by any other name

According to Dr. Joe Burrascano, participants at the first Whittemore Peterson Institute scientific symposium have proposed a new name for XMRV, the retrovirus that may cause ME/CFS.

XMRV stands for xenotropic murine leukemia virus-related virus. Says Dr. Burrascano:
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). 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.
Source: ProHealth

As an advocate, this seems like hopeful news. Longtime ME/CFS researcher Nancy Klimas once gave a talk in which she said she expected the name "XMRV" to change as we learned more about the retrovirus. So a new name reflecting a better understanding feels like progress.

As a songwriter, someone who spends a great deal of time contemplating the shapes of words, I confess that I'm a little let down by the new names. HGRV? Sounds like a cable company and doesn't roll off the tongue. HGRAD? Also awkward to say. (I'm guessing everyone will default to pronouncing it "aich-grad." Others have suggested "hagrid," which rolls better but doesn't make a lot of sense.)

Oh well. I realize it's not a scientist's job to make stuff sound good, and that they must value accuracy over all things. With any luck, the progress this represents will far outweigh any of my petty concerns over poetics.


DeppityBob said...

God, I hope they find a different name for it. Why? "HGRV-positive." No one wants a label that sounds like you've got something related to HIV. There's got to be something else to call it.

Laurel said...

HGRV is definitely more accurate, but as DeppityBob points out, it sounds a bit too close to HIV.. if you say "I'm HGRV positive," people might hear HIV.

Also, HGRAD??? Sounds like slang for High School Grad or something. It's incredibly awkward to say. Hagrid also sounds like haggard, which means "appearing worn and exhausted; gaunt." Reeves, Wessely and all would enjoy that one. :)

I never liked XAND either, but I like it better than HGRAD.

Some have suggested Mikovits Disease.

Either which way, it does sound like things are happening, and this is being taken seriously. That's definitely a good thing.

Laurel said...

Just read this, some of the pros and cons of all the names:

cinderkeys said...

I dunno. I don't think many ME patients will care about the association with HIV as far as the old stigma goes. (I suspect Laurel wants disambiguation rather than a distancing from people with AIDS.) HIV is taken dead seriously. In that sense, evoking the virus that causes AIDS might be helpful.

The similarity really IS annoying in terms of clarity, though. Right now, people can say they tested X-positive or X-negative. "HGRV-positive" is a mouthful, and you can't shorten it to "H-positive" because that could be either HGRV or HIV.

'course, now the talk is that this name change is all just speculation anyway. But what the heck. We need to have SOMETHING to think about before the Alter paper is published. :)