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Jan 18th Webinar with Dr. Lucinda Bateman

julius

Watchoo lookin' at?
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Sing,

The Japanese Red Cross screened a bunch of blood, I think it was about a year ago. They found 1-2% had xmrv. I've seen it come up in a few different places. I don't have a link right now, but I'll look around. I thought it was kind of funny all the concern over the IC study suggesting xmrv might be limited to America when we already knew it was in Japan...and therefore almost certainly worldwide.
 

rebecca1995

Apple, anyone?
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Oh dear...I just got this email from the webinar organizers:

Unfortunately, a technical problem that occurred during the presentation prevents us from posting an archived version as we had hoped, but the presentation slides can be viewed at http://www.cfids.org/webinar/xmrv-presentation-jan2010.asp. We have already invited Dr. Bateman to present an updated program on the same topic in February, as her schedule permits. She may have additional news and data to share at that time as studies continue to progress.

If you were able to record the audio and would be willing to share the file with us, please send a message to cfidslink@cfids.org.
Too bad...I only had the energy to watch part of it live.
 
K

_Kim_

Guest
Sing,

The Japanese Red Cross screened a bunch of blood, I think it was about a year ago. They found 1-2% had xmrv. I've seen it come up in a few different places. I don't have a link right now, but I'll look around. I thought it was kind of funny all the concern over the IC study suggesting xmrv might be limited to America when we already knew it was in Japan...and therefore almost certainly worldwide.
The research was referenced in the IC study, but it came from the Cold Spring Harbor Retrovirus Symposium and it does not appear to have been published in a journal.

Furuta RA, Miyazawa T, Sugiyama T, Kimura T, Hirayama F, et al. (2009) The Prevalence of Xenotropic Murine Leukemia Virus-related Virus in Healthy Blood Donors in Japan. Cold Spring Harbor Retrovirus Symposium.
 

CJB

Senior Member
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I'm so grateful to the doctor for the presentation. Even though there may not have been anything really new covered, I never get tired of hearing an interested ,informed professional discuss the topic. I find it tremendously comforting.

The most promising information was her statement that the Federal Blood Task Force has been working on the testing and their involvement will "accelerate the development" of standardized tests. Standardized tests will likely be paid for by insurance companies. That will be a huge step forward. Although they can't mention specific trials or tests going on, it is apparent that a whole range of researchers are interested in XMRV and are working on it. That's promising as well.
 
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I remember Coffin mentioning that the antibody test is not considered as reliable because it depends on a normal immune system response. If someone is having problems in the immune system, they may have the virus, but no antibody response to it.

Also, and correct me if I am wrong, folks, could it be the virus goes and hides in certain cells sometimes, or in stages, and the antibodies are in the body, but since it isn't actively fighting a replicating virus, there isn't as many antibodies being made. I guess my question is whether the level of antibodies in the blood rises when there is an active infection, meaning replicating virus. Of would the level of antibodies be the same in the blood whether the virus is dormant, hiding and laying low, or if it is replicating.

Tina
 

jspotila

Senior Member
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Clarifications

Both Dr. Vernon and Dr. Mikovits are serving on the same HHS XMRV task force. My understanding is that this group is coordinating the federal effort on XMRV right now. They will test WPI samples and banked samples from the blood supply before determining whether the whole blood supply needs to be screened. From a summary article:

In more recent communications with Dr. Holmberg, he stated that the Blood XMRV Scientific Research Working Group is taking a three-stage approach to its handling of the issues related to XMRV and the possible link to human disease. The first stage will be to standardize and validate laboratory methods and reagents for XMRV testing. This is important since variations in sample collection and laboratory procedures can produce discrepant results. These standardized approaches will be used initially to test 1,200 healthy donors blood samples and 100 CFS patients blood samples collected by Dr. Judy Mikovits of the Whittemore Peterson Institute. Stage two will assess the prevalence of XMRV in the general population and blood supply, as well as in other CFS patient cohorts. The third stage will be a series of studies to understand how XMRV is transmitted, whether it causes human disease, and how it affects various subgroups of the population.

The immediate focus is to ascertain any risks to the general blood supply that XMRV might pose, but the scientific working group is also addressing validation studies for diagnostic tests and if necessary, potential blood screening tests. If the studies indicate that screening is required for blood products, blood screening tests, must be submitted to and approved by the FDA before they can be marketed. Neither of the tests currently being offered by two commercial labs has been reviewed by the FDA.
The Alan and Kathleen Light study write up is here: http://cfids.org/cfidslink/2009/080503.asp
Abstract in the Journal of Pain is here: http://www.jpain.org/article/S1526-5900(09)00574-4/abstract

The samples from this study, funded by the Association, will be tested by XMRV expert Dr. Ila Singh for XMRV. The hope is to see if there is any correlation between the marker profile in the Light study and the presence of XMRV.

Dr. Bateman's slides can be downloaded here: http://www.cfids.org/webinar/xmrv-slides-jan2010.pdf
Dr. Bateman has agreed to present an updated talk sometime in February, hopefully with additional news and data.

Although the Association's attempt to record the webinar failed, another attendee did video the whole thing and it is available on You Tube in nine parts, starting here with part one.

Finally, Dr. Vernon mentioned the Association's BioBank. This is really exciting, and more information will be available soon. As Cort pointed out, already having samples banked and ready to go will save SO much time for researchers. Our hope is that this effort (which will take money!) will lead to a faster pace in CFS research and more standardized cohorts, etc.
 

starryeyes

Senior Member
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This is awesome news Jspotila! A couple of months ago I wrote to my Congressman and to my Senators and alerted them to the XMRV finding in CFS and told them we needed to start testing our blood supply.

Thank you for the YouTube link too. :victory: :hug: :victory:

tee :sofa:
 
D

DysautonomiaXMRV

Guest
The webinar will soon be up on the CFIDS Association of America website.

Until then you can view the files individually on their youtube channel in the 'favourites' section.

Link
 

dsdmom

Senior Member
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Full article

So I was able to access the full article - or really a wonderful friend of mine was able to - and I will post it here. Hope I don't get in trouble for this. :ashamed:

Hope this works...first time attaching something in a post.
 

Attachments

K

_Kim_

Guest
So I was able to access the full article - or really a wonderful friend of mine was able to - and I will post it here. Hope I don't get in trouble for this. :ashamed:

Hope this works...first time attaching something in a post.
dsdmom - Thanks so much for getting your hands on that article. You did a great job for your first attachment! I've put a copy in the Library.

We aren't supposed to republish full text articles that are not Open Access (copyrights), but since there were so many of us that wanted to read the entire piece, I'm going to leave your post AS-IS for now. I probably will edit out the pdf file at some later date.
 

dsdmom

Senior Member
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Thanks Kim! I figured we weren't really supposed to be posting full text on things that are not open access but I know how badly I wanted to see this so figured others might as well...

Now to print off and try to understand a little bit:Retro smile:

Oh and Kim - you mentioned the "Library" - not sure I know where that is. Could you direct me? Thanks!