The internet is a beautiful thing because we have a ton of information at our fingertips, but there are some drawbacks, one being misinformation. I wrote this article after I read a shocking post on Twitter the ensued much fear in the Fibro community. I hope to set the record straight about Fibromyalgia and Chronic Fatigue.
"The Facts about Fibromyalgia and Chronic Fatigue! Some things on the web just aren't true "
By Kimberley Linstruth-Beckom
I came across a rather upsetting Tweet this afternoon about Fibromyalgia and Chronic Fatigue. It was a shock to read and even scared me a bit, but before I go into great detail about the actual tweet, let me delve a little into what I think a responsible journalist is. I’ve touched on this subject in my book Fibro and Fabulous The Book for a very important reason. You see, the internet has change the way people get their information. This can be a very wonderful and positive thing because many average joes have been able to publish articles or blogs. That’s a great positive because you get fresh perspectives on subjects and most of the time these perspectives are not biased due to adverting.
There is a down side, however, and this one can cause a major problem in society to the point of chaos if we as a people don’t do something about it. The down side is misuse of information due to lack of research. A journalist who taught one of my journalism classes once said, “You could be the best writer in the world, but if you don’t research your subject, you will look like a fool.” I took that statement to heart because misuse of information can cause panic in a society, especially when it comes to health matters. If you misinform a group about a health issue, you can cause a lot of panic and undue stress.
Now that I’ve gotten that out of the way, let’s get into the Tweet. The Tweet was about how Canada will not take donated blood from people who suffer from Fibromyalgia. Being the Fibro and Fab gal that I am, the Tweet got my attention. I clicked on the link and was directed to a blog that informed me of a particular study that was done finding a link between a retrovirus (XMRV) and Fibromyalgia. The virus is apparently related to the AIDS virus.
That’s some scary information for a Fibro sufferer to hear, wouldn’t you think? I mean, does this mean that Fibromyalgia is fatal? Can this beast now be linked and passed onto my children? The answer is no. There is still no conclusive evidence linking Fibromyalgia to fatality, in fact, they can’t even link Fibromyalgia or Chronic Fatigue to this “AIDS like” virus.
An editorial (http://www.bmj.com/cgi/content/full/340/feb25_1/c1099) published on February 25, 2010 from BMJ, a publication that boasts “helping doctors make decisions”, explains a new study that failed to find a link between the virus and Chronic Fatigue. Most retrovirologists, as the editorial states, are used to seeing a study in its infancy linking a virus to a disease only to fail once additional testing is done. This link is now no different. The editorial goes further in explaining that two additional studies, one from the UK done by BMJ with 168 participants, and one Dutch study with a few participants, also found no conclusive evidence linking Fibromyalgia or Chronic Fatigue to XMRV.
There have only been a total of four studies done on this to date and the latter three are in conflict with the original study done on patients from the 1980’s in the Lake Tahoe area of New York. There are several more tests to be done before XMRV is ruled out, however, the prognosis so far does not look good for the little theory.
What’s sad is that Canada and Australia have decided to forgo blood donations from those who have Chronic Fatigue (http://www.cbc.ca/health/story/2010/04/07/blood-donations-chronic-fatigue-virus.html). This news is sad because this one study that isn’t even conclusive has really caused a lot of fear. The caution that the Canadian Red Cross is doing is for good reason. During the 1980’s tens of thousands of Canadians were infected with either HIV or Hepatitis C after receiving blood from the Red Cross.
Perhaps some of you out there are a little too young to remember the tremendous blood scare the HIV virus caused, but it’s one I remember. I personally wouldn’t mind the ban for a little while if it makes people safe. After all, that’s the true reason why we donate blood to begin with. Whether Canada is truly right in the ban is really a mute point at this time since there isn’t any unequivocal evidence stating that this ban isn’t needed. What this is showing, however, is that people need to be very careful as to what they print. People, and now, even countries may depend on it.