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. Suffice to say that once again, pro-CCSVI people 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.
I’ve been a sceptic from the beginning. We’re only five years into hearing there might be such a thing as CCSVI, and I do believe it’s much too early to tell if a condition like CCSVI is real or not. Zamboni, however, says angioplasty is a 100% proven way of curing MS.
Other research studies were not so sure until the McMaster study says it ‘debunked’ the case 100% by claiming that their “case-control study provided compelling evidence against the involvement of CCSVI in MS”.
This is where I sigh and think of all those MSers who wished their illness could be cured tomorrow by simply having the blood flow in their veins blown up by small 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 if I am right or not. It will just mean that I will have some apologies to say or to receive because what I have encountered on social media platforms has been anything but MS-friendly.
Pro-CCSVI patients could not believe that “liberation treatment” was not accepted by everyone in the MS community, citing conspiracy theories because big pharma wanted them to remain ill. On the other side of the spectrum, those against were frustrated that people would not spend more time researching angioplasty in MS.
My own frustration grew mainly because of the fact that some people were spending life savings to go to Eastern European where medical standards were not that high to have non-researched treatment, only to return and realise that their treatment didn’t work. It was heartbreaking to hear people say that not only did they lose their savings, but they felt that “liberation” treatment, in fact, made them feel prisoner to MS even more.
Some people claiming they were symptom-free could not convince me 100% because I believe in positive placebo effects, where expectations can influence your mind as well as your body. That doesn’t make them people with mental health problems, it means that the power of their mindset might stimulate the brain into thinking its body is cured. Weeks or months later, their symptoms returned.
With all this as a backdrop, research outcomes were used in a formidable need to prove things one way or another, even by researchers themselves. And this is where I simply thought, “Well, who, what and why are you researching? To prove a point, or to help people in desperate need of a cure?”
My words are therefore for those 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 people with MS 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 in a way I have never seen any MS community before.
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 I myself found out on several occasions? We need to stand up together against researchers toying us around, not against each other.
Why the growing battle between people with a neurodegenerative illness, 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 have faultless and undeniable proof that either venoplasty or angioplasty helps or not.
Now that researchers have joined the pro and con battle that already existed between people with MS on Facebook, Tmbler etc, 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.
CCSVI, report by the US National MS Society
CCSVI, report by the MS Society of Canada
CCSVI, report by the UK MS Society
©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.