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Blood Donation and CFS

Posted by amber | Meds | Posted on December 20th, 2010

Blood Donation, XMRV & Chronic Fatigue Syndrome

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The questions came up soon after the first study of XMRV in chronic fatigue syndrome — should people with chronic fatigue syndrome give blood?

Canada says “no.”  Canadian Blood Services acknowledges that there’s no conclusive link between the retrovirus and chronic fatigue syndrome, or any other disease for that matter, but the agency says it prefers to err on the side of caution.  It’s the first country to make this move.

I’m sure some of us are worried about a stigma that could arise from something like that, and I think it is a valid concern.  However, it seems to me like a choice between being considered “crazy” and “infectious.”  Yeah, it’s lousy either way, but at least people can’t say you aren’t sick and be afraid of catching it at the same time.  That kind of stigma is bound to be the flip side of the condition being validated as an infectious viral disease.

Overall, though, I think the Canadian folks have probably made a wise decision.  If research eventually finds XMRV doesn’t cause disease, fine — lift the restriction.  If, however, future research shows a definite causal like to chronic fatigue syndrome, prostate cancer, or any other illnesses, how many people will the ban have protected?  Hundreds?  Thousands?

It’s hard to quantify, but if the original research was right, about 3% of healthy people could carry XMRV.  If 3% of blood recipients get tainted blood, they could then pass XMRV along to their children, sexual partners (according to preliminary transmission studies), and anyone who gets blood any of those people may donate down the road.  We don’t yet have the full picture of how XMRV is transmitted, so there may be other ways to spread it as well.  Pretty soon, you’re looking at a whole lot of people who are infected and could have the potential to develop something pretty nasty because of it.

XMRV is only the 3rd retrovirus to be conclusively identified in humans.  The first was HIV.  The second one, HTLV, is linked to leukemia and lymphoma.  So out of 3 known retroviruses, we know 2 can be deadly.  So far, XMRV is tentatively tied to 1 potentially fatal disease (prostate cancer) and 1 life-long debilitating illness (chronic fatigue syndrome).  To me, it makes sense to keep XMRV from further contaminating the blood supply until we know more about it.

In the U.S., the group that assesses threats to the blood supply is called the AABB.  It last met in August — 2 months before the research linking XMRV to chronic fatigue syndrome was published.  A Wall Street Journal article talked to an AABB committee member who said she’d give it a “yellow” threat designation, which is the groups’ lowest ranking.

Taking the donation idea a step farther, one of my Twitter friends recently posted this:

“Changed my organ donor status coz didn’t think it would be a good idea 2 put organs from someone with CFS into someone else.”

Because I don’t have chronic fatigue syndrome and research into XMRV in fibromyalgia is too miniscule to even be called preliminary, I’m not to the point of changing my organ-donor status.  If I had chronic fatigue syndrome, though, I’d have to give it some serious thought.  I certainly don’t want to inflict illness upon anyone, especially when their health has already taken a serious beat-down.

What do you think?  Do you think it’s too early to worry about it, or should we err on the side of caution?  Would you give blood or donate your organs, knowing about the possible XMRV connection to your illness?

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