Thoughts on CCSVI- The Liberation Treatment – I can remember back to when news of the Liberation Treatment started to come out here in Canada. I had more than one person congratulate me as the disease that I had been living with for just over two years had seemingly been ‘cured’. Here I am four years later and I’m still waiting. The same media which reported the miracle procedure is now reporting the treatment as a failure.
Rug officially pulled out from under feet. Or has it been?
On May 1st, MacLean’s (another Canadian publication) ran an article titled, “CCSVI dead? No so fast!” This article argues that the procedure has not been proven a failure and more research needs to be done. A very interesting point from the article:
Pubmed lists 136 CCSVI-related studies: the positive ones, which outnumber the negative, tend to be reported by vascular specialists in vascular journals; negative reports tend to be found in neurology journals.
So it would appear to a lay person that vein doctors support the treatment and brain doctors do not. Is this really surprising? Or does it fall inline with the territorial nature of human beings?
What does it all mean to people suffering from Multiple Sclerosis? Do any of us really care about a puffy chest competition between two groups of scientists? Probably not.
For me, I have always been skeptical about the value of the procedure, however, not because I fall on one side of the debate or the other. I have no interest in the politics of science or medicine and I don’t care who is right- my only interest is in being well. The reason for my skepticism regarding the procedure is when I was first diagnosed in 2007 (after severe attacks in 2004 and 2006), I became fascinated by the geographical distribution of MS and the relationship to vitamin D. That interest lead me to researching diet and exercise which eventually evolved into the choices I have made in managing my disease. When I first began reading about CCSVI, I couldn’t understand how a vein condition in the neck could explain the geography of the disease or its’ seeming relationship to sun exposure. However, I always accepted that my opinion could be wrong and I will admit that I have always hoped that once the procedure was studied and put through proper trials it would result in a cure.
Despite the recent negative reports in the press, there have been studies performed that show the CCSVI procedure has been attributed to improvements in patients. In addition, can the anecdotal reports of so many MS patients who have had the procedure really be discounted? Can they simply be chalked up to placebo? For me, it would be extremely hypocritical to discount the positive reports of CCSVI patients. The reports I make on this site are my own anecdotal accounts of my positive experience using diet and exercise to manage my disease. However, I also take the DMT’s (disease modifying therapies) prescribed by my neurologist, so I can be certain that it is diet and exercise alone (or at all). The problem with anecdotal reports is they can’t be clinically proven.
As a person with MS who has read the reports, both positive and negative, I feel that the following is true of the Liberation Treatment:
- CCSVI can’t be the cause of MS as the condition does not appear in all people who have MS
- CCSVI can’t cure MS for the same reason as above; if you don’t have CCSVI you can’t be cured
For me, that is all that can be known with any certainty.
Until next time,