The mention of CFS in the mainstream media is exceptionally rare in Australia. Infact in South Australia where I live, if you mention the acronym ‘CFS,’ people assume you are talking about the Country Fire Service. It is therefore exiting to see most major news outlets today reporting that the Red Cross (Australia’s blood service) is reviewing its current CFS blood donor guidelines. This article can be found here: http://www.theaustralian.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-fn3dxity-1225856015325
The current guidelines for CFS patients giving blood in Australia state that CFS patients are unable to give blood. The guidelines go on to say that if a CFS patient goes into remission, a doctors note is required as evidence of remission and that (former) CFS patient is then eligable to give blood.
The recent possible link of XMRV and CFS caused the Canadian blood authorities to ban CFS patients from giving blood even if they go into remission. The Australian Red Cross is currently considering following the Canadian authorities lead, meaning a lifelong ban of CFS patients giving blood. Hopefully the Red Cross err on the side of caution and do carry out the ban. The Red Cross ban scenario is almost like a footnote to the main story of XMRV as the ban will most likely be consequentially based upon the ultimate CFS-XMRV relationship. Despite this, I will examine the positives and negatives of an Australian, CFS, blood donating ban.
Negatives of banning CFS patients blood in Australia
The ban of CFS patients donating blood in Australia will pragmatically do little as far as spreading XMRV through blood donations is concerned. The number of CFS patients being approximately 0.5% of the population is not that significant. Also the number of those patients who are well enough to give blood and are currently giving blood is so small it would be close to zero. The only CFS patients that would currently be giving blood in Australia and at risk of spreading XMRV are those who have
- Had CFS (diagnosed according to the Canadian Criteria)
- Are XMRV positive (although they themselves wouldn’t know this yet due to no XMRV tests being available in Australia)
- Have recovered from the CFS (let us assume for the sake of argument that CFS is caused by XMRV.)
- Have recovered from the XMRV without taking antiretrovirals
- Have a note from their doctors detailing their remission
- Have decided to give blood despite being sick in the past
The people fulfilling all 6 of these factors would probably be less than 0.1% of the population. When you consider that the original WPI study published in Science found that approximately 3.7 percent of the population are XMRV positive, the ban on the < 0.1% group seems negligable. From this aspect, the potential ban seems largely meaningless as far as stopping the spread of XMRV. Although it may stop the occasional person being infected with XMRV.
If the Red Cross ban CFS patients donating blood, their should be some criteria ie Canadian (although no link between Canadian criteria and XMRV starus has been establised yet.) A possible scenario is that a large number of people who feel “chronically tired” may stop giving blood. This is due to the misconecption in the community about what CFS is (partly due to the misnomer that is ‘Chronic Fatigue Syndrome.’) This may consequntally effect the quantity of blood supply.
A further negative of the ban is the possibility that XMRV doesn’t cause illness. For the Red Cross to ban CFS blood donations based on one study may be a knee jerk, unneccesary reaction.
Positives of banning CFS patients blood in Australia
It seems it is worthwhile being more safe than sorry in this situation, as even if the CFS cohort with XMRV is smaller than the control cohort with XMRV, it will still prevent some of those needing blood contracting XMRV.
Assuming the worst case scenario, where no link between CFS and XMRV is found, the Red Cross would not have done much harm stopping CFS patients giving blood, as the infectious nature of CFS is still a possibility through some other mechanism. Both the unknown etiology of CFS and the results of some studies suggesting an infectious CFS cohort mean the Red Cross should have banned CFS patients giving blood some time ago.
The banning of CFS patients giving blood in Australia would be a positive for those suffering from this largely ignored illness by rasing CFS’s profile. It would finally lead to recognotion that CFS is a serious and debilitaing illness. The extent of the media coverage and banning of CFS patients giving blood would most likely lead to further research and funding of CFS.
Conclusion
I am far from an objective observer on this issue as I have a conflict of interest (ie I have CFS.) It is difficult to know what unpublished studies (if any) the Red Cross (and Canadian authorities) have access to in making their decision. The XMRV-CFS study the world is waiting for is due any day now. This study outline is detailed here: http://online.wsj.com/article/SB10001424052702303450704575160081295988608.html
This will hopefully shed some light on the role (if any) XMRV plays in CFS. I would like to see a ban on CFS patients giving blood regardless of the relationship between XMRV and CFS. This would add legitamacy to the illness and possibly reduce the spread of CFS due to CFS’s unknown etiology. The Red Cross’s decision will in the end probably be a microcosm of science’s verdict of the relationship between CFS and XMRV. In the meantime, let’s all just hope for good science.
UPDATE: New Zealand authorities have banned CFS patients donating blood (including those in remission) in New Zealand. More can be found here: http://www.stuff.co.nz/national/health/3607226/Chronic-fatigue-donors-face-rejection
UPDATE 24/04/2010: Australian authorities have banned anyone who has ever had CFS from donating blood. More can be found here: http://www.donateblood.com.au/news-detail.aspx?IDDataTreeMenu=33&ID=390
I applaud the countries whose Red Cross has decided to exclude CFS patients from the blood donor pool. I haven’t heard anything about the US Red Cross following suit, but hope they will if they haven’t yet done so.
I do wonder, however, how much actual blood donation occurred – most of us ME/CFS folks are too tired to donate blood in many cases, &/or rightly concerned that the resulting low level anemia will exacerbate the symptoms. Still, in early disease phases, when things aren’t so bad, people likely would donate if asked.