This Is MS Multiple Sclerosis Knowledge & Support Community

Posted by Brian Light on July 4, 2010 at 2:01 pm


There was an article on the new CCSVI discovery in the Star on-line news last week that had some critical problems. Please see below.

The article has the slant achieved by doctors (skeptics) who have the natural “talking Cards” they get from being prominent. Reporters are all too susceptible to this, as are politicians. Here is where it missed and frankly, where most of the skeptical narrative misses:

1: The article quotes a critical care physician not a vascular surgeon He states the procedure is experimental in veins and that they do not know enough about veins to engage in this dangerous procedure. I’m sure he doesn't know enough about veins but a properly trained vascular surgeons certainly does. My surgeon was Harvard trained and clearly outlined the risks. He does vascular angioplasty and stenting all the time. He is often working in the jugular just where my procedure was performed. This article gave voice to the wrong guy who got the state of the science wrong.

2: Many Patients are in unstoppable decline or the threat of bad, relapsing decline hangs over them like a dagger. The story does not mention that. For thousands, existing drug therapies are useless. The story did not mention that either. The article does however, depict patients as desperate which is a derogatory term suggesting not only great need and urgency but also forlorn, irrational and hysterical behavior. Using the term “desperate” may be convenient for a reporter and partly descriptive but it is also grossly unfair and terribly misleading. Seeking this treatment is not desperation in any negative sense of that word. Rather than being desperate, declining patients seeking treatment are being prudent and considered. It is the most sane and rational move they could make in their circumstances. Isn’t having MS bad enough with out being handed this “desperate” identifier? Why not use “hopeful”? Calling us desperate, greatly detracts from a thoughtful message.

3: It was asserted that the treatment is untested. This could hardly be further from the truth. It has been given to over 1500 people world wide. The sad thing is that none of the so-called scientists or investigative reporters have bothered to track or report on the “Meta” results that are being generated daily.

4: The article gave great credence to the “Solid Science” argument. This is fine except the kind of “Solid Science” research the skeptics are talking about will take years and patients do not have years. Even after over 100 years of study the research community still does not clearly understand what is happening in the nervous system or the immune system. Now they appear to be demanding a clear understanding of how the vascular system stenosis impacts those systems before treatment that is low risk and has been shown to help, begins. With these standards to work with skeptics can use the “Solid Science” argument to take forever to research the CCSVI connection and thus, put treatment off for decades.

5: I was personally quoted in the article as saying that the testimonials should be taken as proof. What I actually said is that the Zamboni study taken in conjunction with testimonials should be regarded as enough evidence to begin clinical trials or at the very least, compassionate trials. A person can be convicted of murder based on one person’s eye witness testimony but apparently, even a hundred eyewitnesses declaring relief is not good enough evidence to even try and help a dying man who has no other recourse.

Something is beginning to smell in this state of Denmark.

We are begging premier McGuinty to help John Robinson. He is one of the dying men I am speaking of. He is a real and greatly loved Ontario citizen. He is being ignored because some conflicted group of (perhaps desperate), skeptics is insisting that ..“the science is not in”.


Brian Light

PS: My story: I am still doing well and 5 months after my CCSVI procedure my MS symptoms are no better but more importantly, they are no worse. I have PPMS. The progression has been like a clock over 12 years and would otherwise, definitely be worse by now. There is no price than can be put on this value to my life. I would have preferred to have spent my money here in Ontario, but alas, that was not possible.