Thursday, August 19, 2010

Lots of XMRV updates!

Wow, things are moving fast now. Hard to even know where to start!!! (If you don't know what I'm talking about when I mention XMRV, you will want to start here so you understand the rest of this post.)

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 !!!!

2 comments:

sharon said...

Could you please allow this critical post on a major media (Washington Post) advert for CFIDS and XMRV? We would greatly appreciate it! We MUST get word out on the WPI/NCI/CC/NIH/FDA XMRV studies to the public and this is the only real way to do so. Only us sick will understand how critical XMRV is and not the public or the officials in Washington DC who are in charge of funding and research. Thanks! Below is the message with the Facebook page for joining/donating/voting. Yours - Sara
==================================

MAJOR MEDIA CAMPAIGN LAUNCHED!
Please see the Facebook page located at: http://www.causes.com/causes/511536
A group of ME / CFS patients and patient advocacy organizations are forming a patient-driven advertising campaign to address problems in medical care and access to social services. This will be a bold, yet responsible campaign calling for a change. We already have other organizations that have shown interest in signing the advertisements, as a joint message.
As you may know, XMRV news is an opportunity for us to take ME/CFS into the public consciousness. We want to capitalize on this new discovery to create change. We will carefully frame the message to not inflame fear but to create awareness of the problems people with our illness face.
Recent changes in policies at some government agencies, we feel, will create a no-win situation for patients filing for disability and does not take into considering much of the research that has been established with our illness in the past 20 years.
If you want more details on the situation that prompted this, either read the Facebook page or let me know. Contacts for this critical campaign are provided on the Facebook page in the “Administrators” section.
We ask that you take a look at the project and see if you can lend your support. Please consider helping us in the following ways:
• Donate
• Get others associated with your group to donate
• Get friends and family to donate
• Offer your skills, time, energy or resources
Please go to http://www.causes.com/causes/511536
You will notice that in a little over a week we have raised over $1,100 and membership is over the 650 mark. These numbers show that this initiative is what the ME/CFS people believe is needed NOW at the most critical point in our disease’s history.
If you would like to donate but not through Facebook, then you can do so through the PayPal link at PANDORA's site http://www.pandoranet.info/ The PayPal link is at the top left of the home page. All donations made through the PANDORA PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account.
When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. This ensures that donations go to this media campaign. The hardworking folks running this Campaign are getting the Paypal link fixed on their Facebook site, but until that point, please use the PANDORA PayPal link.
Thank you all for making a donation and becoming a member for this super critical national media campaign. Keep an eye on the Facebook page for this campaign as there are updates from the Administrators and you can watch the members and donations climb - and climb toward the goal of getting a strong message out at this super critical point of time.
Be sure and enter "Our Voice, Our Message, Our Lives" in the Description to make sure the money will go to this campaign. We welcome other organizations setting up their own donation fund for this campaign. Contact our Administers for transferring donations to this media campaign. Thank you!!!

DONATE PLEASE! http://www.causes.com/causes/511536?m=f042604e

sharon said...

MAJOR MEDIA CAMPAIGN LAUNCHED!
Please see the Facebook page located at: http://www.causes.com/causes/511536
A group of ME / CFS patients and patient advocacy organizations are forming a patient-driven advertising campaign to address problems in medical care and access to social services. This will be a bold, yet responsible campaign calling for a change. We already have other organizations that have shown interest in signing the advertisements, as a joint message.
As you may know, XMRV news is an opportunity for us to take ME/CFS into the public consciousness. We want to capitalize on this new discovery to create change. We will carefully frame the message to not inflame fear but to create awareness of the problems people with our illness face.
Recent changes in policies at some government agencies, we feel, will create a no-win situation for patients filing for disability and does not take into considering much of the research that has been established with our illness in the past 20 years.
If you want more details on the situation that prompted this, either read the Facebook page or let me know. Contacts for this critical campaign are provided on the Facebook page in the “Administrators” section.
We ask that you take a look at the project and see if you can lend your support. Please consider helping us in the following ways:
• Donate
• Get others associated with your group to donate
• Get friends and family to donate
• Offer your skills, time, energy or resources
Please go to http://www.causes.com/causes/511536
You will notice that in a little over a week we have raised over $1,100 and membership is over the 650 mark. These numbers show that this initiative is what the ME/CFS people believe is needed NOW at the most critical point in our disease’s history.
If you would like to donate but not through Facebook, then you can do so through the PayPal link at PANDORA's site http://www.pandoranet.info/ The PayPal link is at the top left of the home page. All donations made through the PANDORA PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account.
When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. This ensures that donations go to this media campaign. The hardworking folks running this Campaign are getting the Paypal link fixed on their Facebook site, but until that point, please use the PANDORA PayPal link.
Thank you all for making a donation and becoming a member for this super critical national media campaign. Keep an eye on the Facebook page for this campaign as there are updates from the Administrators and you can watch the members and donations climb - and climb toward the goal of getting a strong message out at this super critical point of time.
Be sure and enter "Our Voice, Our Message, Our Lives" in the Description to make sure the money will go to this campaign. We welcome other organizations setting up their own donation fund for this campaign. Contact our Administers for transferring donations to this media campaign. Thank you!!!