"We believe our CCSVI studies testing Dr. Paolo Zamboni’s controversial CCSVI theory will result in groundbreaking discoveries in the field of MS."And…
"I speak for the entire BNAC-JNI research team and Dr. Bianca Weinstock-Guttman to let you know that this particular research is having an impact like no other we have known."This time I bought into the hype. I allowed my heart to seduce my usually scientific mind. In fact, because I wanted to be one of the first bloggers to comment on the significance of the findings, I got up early on the morning of the press release day and drafted perhaps the most inspirational piece I’d ever written. I never published it, because the press release didn't shape up as expected. I'm ashamed that I allowed my emotions to cloud my objectivity. I suffered from temporary irrational exuberance.
Instead of minimizing expectations ahead of an announcement, BNAC had inflated expectations- a classic public relations error. The results were, by most accounts, mixed. This was the sort of announcement that any individual could spin to support their personal view of CCSVI. Here’s a sampling of what people wrote after the BNAC press release:
From the “this makes it more unlikely that Zamboni was right” camp:
"The whole notion of cause and effect is out the window," Dr. Mark Freedman, an Ottawa Hospital neurologist and leading MS researcher. As quoted by the National Post.
"There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," said Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital, again in a National Post article.Note to readers: I include these two quotes not because I consider them to have merit, but rather to illustrate that there are vocal detractors to CCSVI theory, and that their statements are being carried regularly by the National Post. These are quotes of the "negative sound bite" variety, and are not particularly helpful to advancing the debate.
From the “this makes it more likely that Zamboni was right” camp:
“…what was reported in the Canadian Press was that, while the incidence of CCSVI in ALL MS patients was 55% (as the BNAC press release said), Zivadinov indicated that it was 80% in Clinically Diagnosed MSers….while the incidence of CCSVI MAY be 55% (or 65%, depending how you count it) for some sort of broadly defined category of MSer (and we don't know how that was defined) it is 80% for people who have been clinically diagnosed.” From a post at thisisms.com.
“Multiple sclerosis researchers have made an important breakthrough sparking hope of a cure for the disease.”- Sky NewsAnd from the “we can’t read too much from this announcement” camp:
“The trial results released today by the University at Buffalo fall more in line with what would be expected of an MS breakthrough given science's current body of knowledge regarding the disease. While not the eye-popping numbers reported in the previous studies, the 2:1 ratio of CCSVI found in MS patients when compared to healthy subjects is still dramatic and exciting, and should give curious researchers much reason for continued and vigorous investigation of the theory.” WheelchairKamikaze.com
“I believe that the preliminary findings of Dr. Zivadinov and his colleagues in Buffalo are significant and support a link between MS and CCSVI. However, their early data are not as robust as Dr. Zamboni’s and their study raises many new questions.” Dr. Lorne Brandes at The Multiple Sclerosis Resource Centre.
“Over the coming months, much intense research will be underway attempting to answer the many questions surrounding CCSVI. This report out of the University of Buffalo is only the first of many to come, and it would be a mistake to draw anything but preliminary conclusions from it.” WheelchairKamikaze.comSo what is this blogger’s humble opinion? As much as I had hoped these results would solidify the concept that CCSVI is a major cause of MS, the information released so far from BNAC does not do this. And as much as I feared that there might be no researchers, other than Zamboni, who could show a relationship between CCSVI and MS, this is not the case either.
It is so very tempting to draw long awaited conclusions from this press release, one way or another, but there simply isn’t enough here to work with. The suspense is killing me, but we’ll need to wait a while longer before the whole picture comes into focus. We need more information about this study, which should be available in April, and we need more studies, which are in the planning and funding stages now.
I remain optimistic that one day CCSVI can be proven as a major cause of MS. I’m grateful for all of the researchers and physicians around the world who are studying the relationship between CCSVI and MS. I’m equally grateful for members of the MS patient community who are doing so much to advance the cause of CCSVI research- too many names to mention here. You know who you are.
Time, however, is not on my side. I can’t wait for the picture to become clear before taking action. I’m working my tail off to find a doctor who will diagnose, and if blockages are found, then treat me for CCSVI. Given the speed at which my MS is progressing, patience puts me at more risk than taking early action does. CCSVI remains my best chance to halt the progression of this disease before it completely consumes me.