I'm starting this to try and sort out some of the discussion on the "Fight is on..." thread (I've been mostly lurking for a few days - ought to be on the 'Burnout Bench' - not SW's couch - in the lounge).
I have not heard anything on the blood supply question except a breif mention in the 11/19/09 minutes of the 'Advisory Committee on Blood Safety and Availability' - HHS.
Just to put this in perspective, there are 391 pages of minutes for that meeting. XMRV gets a mention at the beginning and then on to other business.
I was talking with my GP last week. In November he had a healthy skepticism about the XMRV association. At this last visit we talked very briefly about transmission and the blood supply. I suggested that I did not expect to hear a word on the blood supply until the HHS could assure the public that "the blood supply was safe" and that there was "nothing to worry about."
If the XMRV association holds up:
1) Develop reliable test
2) Put reliable test in place and screen all new blood
3) Test all existing supplies
4) Announce to public that there is nothing to worry about and that the supply is safe.
5) Adopt policy that anyone with 'XMRV-related CFS' be excluded from donating blood or tissue
My GP's response - "Don't be too surprised."
It's not that the possibility of XMRV isn't accelerating the pace of research (I suspect that it is THE primary government motivation). We're just not going to hear anything on that side of things until we can all be reassured that 'we have nothing to worry about.' I can even imagine that there will be (is?) some tension between releasing results of positive XMRV studies and the HHS being ready to make those 'assurances.'
I have not heard anything on the blood supply question except a breif mention in the 11/19/09 minutes of the 'Advisory Committee on Blood Safety and Availability' - HHS.
Dr. Jerry Holmberg - (ACBSA Executive Secretary - page 22 - general comments at opening of meeting)
I also want to just let you know as a committee and it is very important as we talk about biovigilance and as we talk about organ and tissue safety, that we have become aware in the last month of another emerging infectious disease. It is emerging in the sense that we are finding more about this virus and the virus you actually do have papers in your handout is called XMRV and this is xenotropic murine leukemia related virus.
This was identified a few years ago to be associated with individuals with prostate cancer. And on October 8th there was a report in Science that the virus was also detected in individuals that had chronic fatigue syndrome. So I don't want to spend a lot of time. I just want you to be aware of this. That within the Department I have presented at The Chronic Fatigue Syndrome advisory committee to explain a little bit about what we are doing to monitor this and also to investigate some of the findings. And the Department is taking this very seriously and looking at, first of all, standardizing the tests that the researchers have used to detect this virus and then also potentially we will be looking at our recipients and donor repositories to investigate not only the prevalence but also if this virus can be transmitted by blood products.
So I just wanted to throw that article in your pile of information so that you have this and you will be aware of this. But at the present time, we will not be taking discussion on that. In fact, it is very premature in collection of the data but I wanted to make sure that you were all aware of that.
Just to put this in perspective, there are 391 pages of minutes for that meeting. XMRV gets a mention at the beginning and then on to other business.
I was talking with my GP last week. In November he had a healthy skepticism about the XMRV association. At this last visit we talked very briefly about transmission and the blood supply. I suggested that I did not expect to hear a word on the blood supply until the HHS could assure the public that "the blood supply was safe" and that there was "nothing to worry about."
If the XMRV association holds up:
1) Develop reliable test
2) Put reliable test in place and screen all new blood
3) Test all existing supplies
4) Announce to public that there is nothing to worry about and that the supply is safe.
5) Adopt policy that anyone with 'XMRV-related CFS' be excluded from donating blood or tissue
My GP's response - "Don't be too surprised."
It's not that the possibility of XMRV isn't accelerating the pace of research (I suspect that it is THE primary government motivation). We're just not going to hear anything on that side of things until we can all be reassured that 'we have nothing to worry about.' I can even imagine that there will be (is?) some tension between releasing results of positive XMRV studies and the HHS being ready to make those 'assurances.'