I will be really honest with you. Last night I had the bright idea to write something about the frequently talked about, always fought over treatment for CCSVI, chronic cerebrospinal venous insufficiency, named so by Dr. Paolo Zamboni in 2008. According to Zamboni, he “cured” his wife of her own MS because he found a compromised flow of blood in her neck veins, draining her central nervous system and that a cure was reached by having simple angioplasty surgery.
So far the introduction. I will not go into the details of how, what and why because, and here is the ‘honest’ part I mentioned earlier, it is too intricate to explain and I simply do not have the energy to go into it from A to Z. Suffice to say that once again, the pro-CCSVI crowd jumped out of their skin last Wednesday when McMaster University in Canada published a new twist to the tale in its latest CCSVI research: Evidence against the Involvement of Chronic Cerebrospinal Venous Abnormalities in Multiple Sclerosis. A Case-Control Study.
Anyone up for reading the full report, feel free to do so and then let me know if I should perform some somersaults to celebrate or not. I still think it’s all a little bit gobbledygook because we’re only five years into finding out there was such a thing as CCSVI, so I do believe it’s too early to tell definitively if CCSVI is real or not. Zamboni says it’s 100% proven, other research studies show a ‘maybe’ and now the McMaster study says it ‘debunked’ the case 100% by claiming that their “case-control study provides compelling evidence against the involvement of CCSVI in MS”.
Yes… this is where I sigh and think of all those MSers wishing their illness could be cured tomorrow by simply having the blood flow in their veins blown up by wee balloons. Here is also where I give up and where I swear that I will profess my undying love to either Zamboni who proves beyond a shadow of a doubt that CCSVI is real, or to the research team that definitively debunks the CCSVI question. After following study after study, hopes raised and dashed just as fast, I will not care one way or another anymore if I am right or not. It will just mean I will have some apologies to say, or to receive. Like I said… tired and energy levels dwindling fast as the day goes on and I simply want an answer that will lead to a cure.
My words are therefore for those researchers trying to cause more upset by trying to outdo each other and instead of finding a cure for MS, wanting to ‘debunk’ other people’s research. Stop playing with the emotional balance of people living with multiple sclerosis, where’s the goodwill in the world if researchers cannot do even that?
What I am also trying to say is: this should be a call to arms, not only to MSers who believe in CCSVI, but also to those who don’t. We share the same illness, yet we stand on either side of the fence. We share the same hopes and fears, the same anxious moments in neurology waiting rooms all around the world yet we seem to find each other despicable for believing something different.
So why do we want to trash each other’s belief systems on social media platforms like yours truly found out herself on several occasions? We need to stand up together against researchers toying us around, not against each other. Why the continuously growing battle between ill people, caused by research teams who seem to want to win the war no matter what? Why do we not hear of similar battles in cancer research, or any other kind of medical research for that matter?
We all want a cure for MS, we all need to know that one day we will be able to walk again. That we know we will get through the day without having to rely on all sorts of medication and holistic treatments. We all want to know that finally, there is absolute, faultless, definitive and undeniable proof out there that either venoplasty or angioplasty helps or not.
Now that researchers have joined the pro and con battle that already existed between MSers on Facebook, Tmbler and the like, I believe it’s time we need to start focusing on the really important things: reassurance that researchers are honestly looking for solutions for a degenerative and debilitating illness such as MS.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.