Living with ME/CFS: Giving Blood
In a press release last Friday, The American Red Cross stated, “At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS.”
In June of this year, following the news of the FDA/NIH's positive study regarding the Murine Leukemia Virus-related virus and ME/CFS, the American Association of Blood Banks (AABB) issued a bulletin to its members urging them to “actively discourage potential donors who have been diagnosed by a physician with CFS from donating blood or blood components.”
The FDA, in charge of regulating the nation's blood supply, hasn't yet changed it's recommendations regarding donations from ME/CFS patients. They are waiting on a report from a federally funded task force charged with studying whether XMRV poses a threat to the U.S. blood supply.
I'm glad to see that the Red Cross has joined the AABB in at least acknowledging that XMRV may pose a risk to the blood supply, but their efforts seem somewhat half-hearted to me.
The way the AABB is “actively discouraging” people with ME/CFS from donating blood is “through the use of donor education materials available at the donation site.” They also say that anyone with ME/CFS symptoms would be asked, "Are you feeling well today?" If they respond that they're not feeling well that day, they would be deferred.
If the AABB is actually trying to prevent the transmission of a potential blood-borne pathogen, I can't figure out why how the donor is feeling that particular day has anything to do with it. We're talking about a retrovirus that may be transmitted through blood. Would they allow HIV patients to donate blood if they felt good that day? I don't think so.
The Red Cross seems to have gone a step further by saying if a donor reveals they have ME/CFS during the interview, they will be deferred. But there is no indication that they will be directly asked if they have been diagnosed with ME/CFS. It sounds more like that is information they will have to volunteer.
I know they don't have the absolute proof they're looking for yet that XMRV or a related retrovirus causes ME/CFS, but enough of a connection has been demonstrated that I would personally like to see them err on the side of caution.
A fundamental principle of medicine is “First, do no harm.” What harm could there be in absolutely banning anyone with ME/CFS from donating blood? The ban could always be lifted later if no danger is found. On the other hand, not actively screening for and banning anyone even suspected of having ME/CFS could result in great harm if the retrovirus is transmitted through blood.
American Red Cross Statement on XMRV and Chronic Fatigue Syndrome. American Red Cross. Press Release. December 3, 2010.
Recommendation on Chronic Fatigue Syndrome and Blood Donation. AABB. Press Release. June 18, 2010.