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Last week I was reading a lot about the latest research linking Chronic Fatigue Syndrome (CFS) to the XMRV Retrovirus. Some of the articles even implied that people suffering with CFS (like myself) should be excited at the possibility that this news could lead to better diagnosis and treatment of CFS. But, it's not exactly good news for CFS patients, especially for patients hoping for a cure. Here's why...
While finding a virus linked to CFS may sound promising - Just cure the virus and you cure the disease. It's much more complicated than that. The virus being linked to CFS is a retrovirus, it's not the sort of virus we can just throw some anti-viral medicine at to get rid of it. It's a complicated process, but it goes something like this - Ordinary viruses attack a cell and eventually kill it during it's process of spreading to other cells. Retroviruses don't just spread they also mutate the cell (without killing it), so mutated cells go on to replicate and spread the virus as well as the cell mutations. So the cell mutation part is what makes this type of virus more difficult, and why we are hearing it compared to the HIV virus (another retrovirus). But this is only one study, there will need to be many, many more studies before we have any definitive answers.
While I appreciate the fact that CFS is finally getting the attention it deserves, there is still a lot of research to be done. This retrovirus finding is a very important "key" to unlocking the truth about this debilitating disease. However, I don't necessarily see it as the smoking gun. Granted, I'm not a scientist, but I do have my personal experience with this disease (and the medical background of a nurse), and this is my first impression about these latest findings...
Chronic Fatigue Syndrome is a disease that (among other things) weakens a person's immune system. So this finding of a specific retrovirus being found in a large number of CFS patients is a classic "what came first the chicken or the egg" scenario. Did the weakened immune system create the perfect petri-dish for this virus to exist? Or did this virus contribute to the weakened immune system? The bottom line is - There is much more research that needs to be done before we can get the answers we are looking for. I do hope that these new findings can at least put to rest any idea that CFS is "all in the head" of the patient.
I actually had a neurologist tell me a few years ago (to my face) that he did not believe in my diagnosis. If that's not bad enough, when I called him on it, and asked if he thought my symptoms were all in my head...He told me that I probably had MS (multiple sclerosis) and it just hadn't been able to be diagnosed yet. What? This "so called" medical specialist was so against acknowledging that chronic fatigue syndrome could exist, that he actually had the nerve to "pre" diagnose me with a condition that I had already been tested for and told I did not have. Explaining that "if" my symptoms were real, then I would have to eventually be diagnosed with a "real" disease. I'm not a violent person, but I REALLY wanted to punch this man freak in the face...I think he graduated from the Doctors for Dummies School of Medicine (and that's all I'll say about that).
OK...Sorry for the rant, I'll get back to my feelings on this latest research now.
Don't get me wrong, I am ecstatic that there is finally some actual scientific research being done on Chronic Fatigue Syndrome. I was beginning to wonder just how long doctors would be allowed to get away with making personal judgments on whether or not to "believe" in a CFS diagnosis (a diagnosis that is already accepted by the AMA and CDC).
I hope these latest finding will (at the very least) help educate both the public and the medical community, that this is a real disease with real symptoms that need to be treated--not ignored. This is from a statement I wrote for the Chronic Fatigue Syndrome Advisory Committee that met in Washington D.C. (in May of 2007), and I believe it is still relevant today...
Being a single mother is not easy under any circumstances, but being a single mother with Chronic
