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

[Sunshine]

HGRAD?

Sounds like a rocket launcher from the Soviet Union.

XMRV sounds better. Also points to the origins as XMRV is originally from a mouse, although not a mouse virus but human.
Doc's at the WPI probably did a deal with the feds that if they took the 'mouse' out of the disease they'd help us.

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

 

[Mark]

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.

 

[bullybeef]

The Hagrid thing made me giggle....Hi, I've got HAGRID. :tear:

BTW, Dr Burrascano seems to be famous for treating Lyme disease (or tick borne diseases). Is there a tenuous link we're not being told about here?

http://www.lymediseaseresource.com/Burrascano.html

 

[George]

Snicker snort all out rolling on the floor laughing!

So when can I start H-GRAD school!?!

 

[urbantravels]

The 23rd...that would mean it would appear online on Monday rather than Tuesday of next week.

Sunday night we'll all be like kids trying to sleep on Christmas Eve.

 

[richvank]

Oh my lord. Otis bite your tongue. Hagrid?????

Third reaction: HE SAID "THE ILLNESS CAUSED BY THIS INFECTION."

not "the illness strongly associated with the presence of this retrovirus but causation not proven" ---

"THE ILLNESS CAUSED BY THIS INFECTION"

I'm sorry, I don't know who Dr. Burrascano is. Is he a wholly reliable source??

Hi., urbantravels.

Dr. Burrascano had a practice in New York specializing in Lyme disease for many years and now consults. He has written a guide to diagnosis and treatment of Lyme disease that has been revised many times over the years. If you google him, you will find it. Dr. Burrascano is well-known in the Lyme community, and is active in the ILADS organization, which is the group of so-called "Lyme-literate MDs" or LLMDs. They are the docs who treat longstanding Lyme disease with long-term antibiotics, and have an on-going disagreement with the Infectious Disease Society of America about this. Dr. Burrascano underwent a long legal challenge to his license, and is something of a hero to many people in the Lyme community.

Rich

 

[Sasha]

Yes, overall I'd have to say: unpronounceable, not scary enough, sounds too much like a truck.

I have to agree, I thought "XMRV" sounded really dramatic and quite space-age. Oh well, truck it is.

By the way, the 23rd is a Monday but I thought PNAS's line-up was published on a Tuesday - have I got that wrong?

 

[pictureofhealth]

Thank you very much for this Rich and to Dr Burrascano.

This all sounds like really serious stuff now and is the first post that's got me really excited since the Science paper.

Wow - a room full of serious scientists seriously discussing biomedical research into CFS/ME, plus a stunning scientific retroviral discovery, plus real brainstorming on how to take the science forward, a debate on a name change to a serious name and all in a pupose built CFS/ME medical unit - I'm struggling for breath its all so thrilling !!!!!!!

I did like the name XMRV - its unusual, but I guess we all just GRADuated - sorry , someone had to say it!!

 

[Mark]

And saying that it's not a mouse virus, are they also saying there that it's not an exogenous MLV-related virus? Or just that that's not important since it's now a human virus? That is: is it a technical, nomenclature issue, or does it imply something new about the science?

 

[Rrrr]

i have seen dr burrascano speak and he was very human and down to earth and knowledgeable.

AND PEOPLE, THIS IS HUGE: THE CFS AND LYME COMMUNITIES MAY MERGE.

am i off base here?

 

[George]

From just tired to down right Hagrid

Oh, man when I quit laughing so hard I'm going to write a protest letter. Please keep XAND it's so much more dignified. Like Mark said the H-files just aren't the same.

Oh man I'm crying from laughing so much, I think I maybe cured from all the "funny" medicine!!!!!!!!!

 

[pollycbr125]

Couldnt they just stick an H in front of XMRV ie H-XMRV would be far less confusing . Also how would the prostate researchers go on are they sticking with XMRV or would they change too . This is all too much for my frazzled brain

 

[Sasha]

AND PEOPLE, THIS IS HUGE: THE CFS AND LYME COMMUNITIES MAY MERGE.

How big is the Lyme community? (Seriously, I have no clue).

 

[creekfeet]

I'd agree with those who suggest we pronounce it "haggard." But what I'd really prefer is that it be called Mikovits' Disease.

 

[urbantravels]

They are the docs who treat longstanding Lyme disease with long-term antibiotics, and have an on-going disagreement with the Infectious Disease Society of America about this.

Something just jogged my memory...does the Infectious Disease Society of America have a stance on CFS? Like, "bugger off, CFS is not an infectious disease"?

I seem to remember the one ID doc I saw saying something like this. (In the course of telling me that CFS is a "wastebasket diagnosis" and "not fashionable" any more.)

Oh, the whiplash all these people are going to get. How very interesting it will be if I find myself BACK in the office of that ID doctor, the one who patted my shoulder and told me I'd feel much better in six months if I got my anxiety problem seen to...

I actually liked him. He seemed like a smart guy.

 

[Rrrr]

How big is the Lyme community? (Seriously, I have no clue).

i don't know. good question. it certainly gets a lot more media attention than CFS does.

 

[rebecca1995]

Joey, I totally understand re your source! Thanks again.

i have seen dr burrascano speak and he was very human and down to earth and knowledgeable.

AND PEOPLE, THIS IS HUGE: THE CFS AND LYME COMMUNITIES MAY MERGE.

am i off base here?

rrrr...you're absolutely right. The first thing I noticed about the announcement was not the name change but the fact that Dr. Burrascano, THE Lyme man, had not only been invited to the symposium but is now in the working group.

I've long been frustrated by the (probably false) dichotomy between chronic Lyme and CFS.

 

[Mark]

By the way, the 23rd is a Monday but I thought PNAS's line-up was published on a Tuesday - have I got that wrong?

New stories are published on the internet on Tuesdays but I still haven't been able to determine when the print issue comes out - anyone?

 

[creekfeet]

Definitely stay tuned- the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.

That certainly seems more than an implication but a direct statement that Lyme is related somehow to HGRV. Else, why would he say it should be of concern to patients with chronic Lyme?

 

[urbantravels]

And saying that it's not a mouse virus, are they also saying there that it's not an exogenous MLV-related virus? Or just that that's not important since it's now a human virus? That is: is it a technical, nomenclature issue, or does it imply something new about the science?

The theory is that it jumped from mice to humans - "recently" (not meaning in the past 100 years necessarily, but probably last 1000 years give or take - this per Dr. Stephen Goff.) But it is no longer a mouse virus.

After all, HIV is Human Immunodeficiency Virus. It jumped from primates to humans at some point, but that doesn't make it still a primate virus.