First of all, you may remember my discouragement just a short time ago and the apparent government cover up of XMRV research confirmation. Well, guess what? It's out in the open now! Yes, front page headlines this week have read, "Finding by Reno Scientists Confirmed by US Government"! XMRV has been found via replication study and it's finally made mainline news. Help and hope for real treatment are a significant step closer to reality now. I'm giddy with excitement!
I plan to attend the grand opening of the actual building that now houses Whittemore Peterson Institute for Neuro-Immune Disease (WPI) on Saturday. I'll be there by wheelchair, but I'll do everything in my power to at least be there! I am still very hopeful about also attending their fundraising gala next month, but I still need to raise over $300 by the end of the month to make this goal. (Thank you to the handful of friends who have helped me raise a portion of the needed $500 total so far! If you are able to help me with even a couple of dollars, I would greatly appreciate it.) If I do not raise enough to purchase the two tickets, I will still be donating every penny I do raise directly to WPI for ongoing XMRV research.
Speaking of XMRV, that name may not be the one we continue speaking for the long term. I don't have any additional information nor confirmation at this time, but according to a post made this morning on the Phoenix Rising forums, HGRV- Human Gamma Retro Virus (thus illness caused by this infection is HGRAD- Human Gamma Retrovirus Associated Disease) will be the new name announced next month. This name more accurately reflects the medical and scientific realities of the cause and course of this virus (and might I note, it roll off the tongue a whole lot easier than Xenotropic Murine Leukemia Virus-Related Virus Associated Neuro-immune Disease)! It will be interesting to see what comes of this potential change and I'll do my best to keep you informed as any updates are available.
The text of the posted letter, attributed to Dr. Joseph J. Burrascano Jr. of New York reads:
Hello all from Dr. B.
I just returned from the first official scientific symposium of the Whittemore-Peterson Institute on the topic of XMRV.
We formed a working group to be in constant touch and we plan to meet regularly because advances are coming so rapidly.
Big news that everyone should know and adopt is that we have proposed a name change for the virus.
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.
We plan to announce this at the upcoming NIH retroviral conference this September.
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.
Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA
Update on potential name change as of Aug. 20, 2010, as posted to Andrea Whittemore's Facebook wall:
Speculation and rumour about a name change is just that Speculation and Rumour . Discussions about name changes are up to the Government !!!!