NEWSBRIEF: Australia has become the latest country to bar people diagnosed with chronic fatigue syndrome from donating blood. Canada was the first to take such action, followed by New Zealand.
The concern is over preliminary research linking chronic fatigue syndrome to XMRV, a recently discovered retrovirus. While so far XMRV is not conclusively linked to any human disease, Australian blood services officials say their top priority is protecting the blood supply and they're not willing to take the risk. They plan to review this decision in two years, when the possible link may be better understood.
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These days some of my meds bar me from giving blood, but I gave up giving blood long before I was on the meds. The truth is, we just don’t know what causes FMS or CFS. I’m just not comfortable giving blood under those circumstances. It was a hard decision to make, because AB is a relatively rare type and it’s always in demand. But what if we do find out these illnesses are caused by an as yet undiscovered virus and we’ve been sharing it over the years through our blood donations.
Obviously, this is a decision each person needs to make for themselves, but I stopped giving blood not long after my diagnosis in ‘95.
What concerns me is the ludicrous amount of time that it takes to get a diagnosis – and that the bans are being promoted as CFS only (not including fibromyalgia which the WPI XRMV research indicates might also involve XMRV infection).
I have fibromyalgia and it took 3 years to be diagnosed – I know many others have similar experiences in suffering the pain, fatigue and other problems with these conditions before they get to someone who finally diagnoses them.
Perhaps though this provides an opportunity for national FMS/CFS bodies to get clever in the marketing (perhaps in partnership with the blood banks) to promote awareness of these debilitating conditions, how to recognise their symptoms, and what to do if you have the symptoms.
Some people may not even become aware of some of the smaller symptoms – they just compensate for them or don’t realise that their vague persistent aches and pains in combination with some other symptoms might be something more sinister.
A flyer with a screening checklist would be a really good place to start, perhaps in conjunction with posters and an information sheet or brochure on fibromyalgia. This could be made available at blood banks and GP clinics. A short article for GPs on recognising CFS/FMS would also help.
CFS has been given legitimacy by the decisions of blood banks in several countries to ban people from donating blood. I think it’s too good an opportunity to waste.