Posted on 12/16/2010 4:21:12 PM PST by Seizethecarp
An advisory committee to the federal Food and Drug Administration is recommending that people with chronic fatigue syndrome be barred from donating blood, amid concerns a retrovirus may be linked to the disease.
The recommendation by the panel must now be reviewed by the FDA, which typically follows the advice of such panels but is not required to do so. An FDA spokeswoman said there was no timetable yet on a final decision.
Judy Mikovits, who led the team of researchers that published the study in Science linking XMRV to chronic fatigue syndrome, said Tuesday's decision is a victory for patients because "for the first time ever, they are being seen as sick with an infectious disease.''
John Coffin, a retrovirologist who was a member of the advisory panel and voted to support a screening question, said that he still didn't know for certain whether or not XMRV is associated with chronic fatigue syndrome. But he said there was enough scientific evidence to support the notion that at least some cases of the condition are caused by an infectious agent.
(Excerpt) Read more at online.wsj.com ...
http://www.cfids.org/xmrv/default.asp
Registration for a CFIDS webinar on the FDA screening recommendation scheduled for tomorrow, Fri. 12/17, at 1:00 PM can be found here:
https://www1.gotomeeting.com/register/985931313
FDA ... ME/CFS due to link to XMRV
WTF does it all MEAN?
When I gave blood six weeks ago, the blood center was advising/telling people with CFS not to donate blood.
FDA=Food and Drug Administration
ME=myalgic encephalomyelitis
CFS=Chronic Fatigue Syndrome
XMRV=Xenotropic murine leukemia virus-related virus
hope this helps
How do you know if you have CFS? It was my understanding that there isn’t a *test* for this, has that changed?
Interesting.
I haven’t donated blood in years because I lived in Europe, and apparently, there is too much of a risk that I will spread mad cow disease.
Have there been cases of CFS developing following a transfusion, and it was found that the donor has CFS? This article really doesn’t give many details.
The Red Cross only this month began to screen out CFS donors.
The Red Cross only this month began to screen out CFS donors.
The first study linking CFS and XMRV by the U. of Nevada's Wittemore Peterson Institute (WPI), National Cancer Institute and Cleveland Clinic was published in October 2009.
Since then the virus has proved very hard to find even in advanced laboratories at the limit of PCR technology, supposedly the gold standard for virus detection. During the past year WPI resorted to culturing XMRV virus from CFS patient samples which takes up to two months.
Then in August a lab bought by WPI called VIP Dx made available a serology test which detects antibodies that a person makes to the XMRV virus and that test still takes six weeks to get back from VIP Dx.
Here is the link to VIP Dx if you want your blood tested for XMRV and related retroviruses:
I had a rough day medical health wise yesterday and resting up today so I can stay committed to events this week end.
That being said when I read the Title and your comment all my brain could think was MAN that is allot of cryptic letters.
Like reading Chinese. LOL
This FDA blood advisory committee has been involved in a four part study to determine risk to the blood supply and this new recommendation to require exclusion of CFS patients came at the conclusion of the second of the four parts of the study.
The next steps include:
1. a retrospective assay of stored and previously donated blood to determine which donors had XMRV and which recipients received potentially tainted blood.
2. prospective tracking of donor-recipient combinations for XMRV transmission
3. developing a high-volume assay to screen out donated blood that has XMRV. Several studies have shown that around 4% of controls (general population) have XMRV, not XMRV.
What is worrying is that XMRV has been linked to prostate cancer, leukemia, breast cancer and also autism as well as fibromyalgia.
Medical professionals have been baffled by the sharp recent increase in the rates of breast cancer, autism as well as CFS in the young. A very hard to detect, but very intractable retrovirus, such as XMRV, could be responsible but it is too early to tell. BTW, I also got kicked out of being a Red Cross donor for having visited my sister in the UK during the peak of the mad cow scare. I had a rib-eye steak on Thanksgiving in a pub (couldn't find any turkey) and the very next day on the BBC they announced that as of that day rib-eye steak was banned due to the (yummy) marrow which had high risk for mad cow. I didn't get mad cow, but my wife is not sure, sometimes.
Sorry. It was the WSJ who gave the story a poor title IMO.
I wanted to make sure in the title on FR to attract folks who would be searching for ME/CFS and XMRV.
The “ME” term is the UK (and Anglo outside US) term for CFS.
If you are too damn lazy to type it don’t post it!
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