Discussions By Condition: I cannot get a diagnosis.

Unknown illness/CFS/fibro?? seminar DHHS, XMRV latest

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: taniaaust1
  • December 16, 2010
  • 10:05 AM

I have been struggling with the neuro-immune illness ME/CFS for 14 years. A virus, XMRV, has recently been found to be highly correlated with this disease. The Department of Health and Human Services Blood XMRV Scientific Research Working Group has studying whether XMRV poses a risk to the nation's blood supply. The Blood Products Advisory Committee yesterday voted to advise the FDA to defer ME/CFS patients from donating blood. http://online.wsj.com/article/SB1000...854485688.html

Since XMRV may be implicated in several cancers, MS, fibromyalgia, ME/CFS, and other neuro-immune diseases, the results of the work done by the Department of Health and Human Services (DHHS) Blood XMRV Scientific Research Working Group are important not just to those of us with these illnesses, but to the population at large.

DHHS has expressed interest in the number of people who register for/attend this webinar on the BWG study as a way of gauging the community's interest in the study. Please register for this free Webinar as a show of support for those of us suffering from these illnesses and our desire to prevent possible further spread via our nation's blood supply. You need not listen to the seminar on Friday, but please do so if you are interested in what the Working Group is doing to evaluate whether XMRV poses a risk to the blood supply.

The DHHS Blood XMRV Scientific Research Working Group is conducting studies to evaluate whether XMRV poses a threat to blood safety.

In this webinar, Graham Simmons, PhD, and Michael Busch, MD, PhD, of Blood Systems Research Institute and University of California-San Francisco will provide an update on the Working Group studies, including results from Phase II, as well as future retrospective repository and prospective screening studies of XMRV in US blood donors and recipients. Steven H. Kleinman, BSc, MD, of University of British Columbia, and a member of the Working Group, will serve as moderator for the discussion.

https://www1.gotomeeting.com/register/985931313
...............

I hope those who are suffering from "unknown illnesses" or CFS/ME/Fibro consider maybe XMRV.

We need more studies!! far more in this field. They are coming but things are moving too slow, how many others may be infected by blood, saliva or whatever is transmitting this while the health profession is being so slow to work out what the heck is going on here with all this (its been over a year now and the government health depts etc are still trying to work it out)

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  • I have been struggling with the neuro-immune illness ME/CFS for 14 years. A virus, XMRV, has recently been found to be highly correlated with this disease. The Department of Health and Human Services Blood XMRV Scientific Research Working Group has studying whether XMRV poses a risk to the nation's blood supply. The Blood Products Advisory Committee yesterday voted to advise the FDA to defer ME/CFS patients from donating blood. http://online.wsj.com/article/SB1000...854485688.htmlSince XMRV may be implicated in several cancers, MS, fibromyalgia, ME/CFS, and other neuro-immune diseases, the results of the work done by the Department of Health and Human Services (DHHS) Blood XMRV Scientific Research Working Group are important not just to those of us with these illnesses, but to the population at large.DHHS has expressed interest in the number of people who register for/attend this webinar on the BWG study as a way of gauging the community's interest in the study. Please register for this free Webinar as a show of support for those of us suffering from these illnesses and our desire to prevent possible further spread via our nation's blood supply. You need not listen to the seminar on Friday, but please do so if you are interested in what the Working Group is doing to evaluate whether XMRV poses a risk to the blood supply.The DHHS Blood XMRV Scientific Research Working Group is conducting studies to evaluate whether XMRV poses a threat to blood safety.In this webinar, Graham Simmons, PhD, and Michael Busch, MD, PhD, of Blood Systems Research Institute and University of California-San Francisco will provide an update on the Working Group studies, including results from Phase II, as well as future retrospective repository and prospective screening studies of XMRV in US blood donors and recipients. Steven H. Kleinman, BSc, MD, of University of British Columbia, and a member of the Working Group, will serve as moderator for the discussion.https://www1.gotomeeting.com/register/985931313............... I hope those who are suffering from "unknown illnesses" or CFS/ME/Fibro consider maybe XMRV. We need more studies!! far more in this field. They are coming but things are moving too slow, how many others may be infected by blood, saliva or whatever is transmitting this while the health profession is being so slow to work out what the heck is going on here with all this (its been over a year now and the government health depts etc are still trying to work it out)I'm sorry you have it, but glad that you know what you have. Here is hoping that they can do more research and find a cure! I have a friend with MS.
    Wolfieroo 1 Replies
    • December 20, 2010
    • 04:17 AM
    • 0
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