“This is the way the world ends
Not with a bang but a whimper.”
We hoped. We prayed (some of us did, anyway). We researched. We organized. The MS patient population and a few sympathetic practitioners stood up to the medical establishment, goddammit! I wrote forty blog posts about CCSVI (forty-one now). But, given what we know today, there’s something that must be said.
I was wrong.
We were wrong.
For those unfamiliar with this saga, the term CCSVI was coined by Dr. Paolo Zamboni of the University Ferrara, Italy, in 2008. The acronym stands for “chronic cerebrospinal venous insufficiency.” Zamboni theorized that restrictions in the veins that drain the central nervous system — the brain and spinal cord — contributed significantly to MS disease activity. Furthermore, he believed opening such restrictions via balloon angioplasty or the placing of cardiac stents could improve MS outcomes.
Nevertheless, a few rogue medical professionals set up research projects and began treating patients for the condition. The medical establishment accused the rogues of acting irresponsibly, risking the health of MS patients, and perhaps worst of all, profiteering from misguided, gullible, vulnerable patients.
To this day, I insist I was only slightly misguided, but I was neither gullible nor vulnerable. I was not a victim. I was simply desperate.
Online patient groups arose organically and became vocal. We wanted to be treated immediately, not years down the road. A group of us patients possessed a scientific slant, and we formed an organization called the CCSVI Alliance, complete with a website called CCSVI.org. We organized the growing body of technical information both for and against the theory.
I must admit, however, that we were not impartial. We advocated for CCSVI. We had a positive bias, and this was reflected in our work. To our credit, the CCSVI Alliance eschewed the anecdotes, the miracle YouTube videos showing individuals rising from their wheelchairs. We sought out the studies and facts, such as they were. But all the scientific papers lacked one thing—the gold standard for potential treatments—placebo-controlled clinical trials.
Dr. Zamboni’s team concluded that CCSVI treatment doesn’t work. “The procedure cannot be recommended for treatment of patients with MS; no further double-blinded clinical studies are needed.”
For a more detailed discussion of the trial results, I recommend the article written by the MS Research Australia website. I’ll leave it to other bloggers to dive into the weeds. Instead, I’ll address the effect that our pursuit of CCSVI has had on the MS population.
I had CCSVI procedures conducted not once but twice on the veins that drain my central nervous system. I approached these procedures hopeful but not confident. In 2010 I went to Brooklyn, and in 2011 to Albany. I experienced no benefit from either procedure. I experienced no problems either. I experienced nothing. Worldwide, thousands of patients were treated, with the number of procedures peaking in probably 2011 or 2012.
Then, as more and more patients saw no lasting benefit, the phenomenon slowly lost its momentum, and for the past several years very few doctors continued to treat, and very few patients sought them out. One could argue that CCSVI died years ago, but this is the final nail in the coffin, if you will. The founder of the movement has disavowed it. This is the way CCSVI ends, not with a bang but a whimper.
How do we keep something like this from happening again—keep patients from chasing ineffective treatments, keep precious research dollars from being wasted? We cure the damn disease, that’s how. Until such time, patients will take matters into their own hands and demand treatments before they are fully vetted. We will take risks. The odds are, for any given treatment, that the results will be unsatisfactory, but there is nothing so unsatisfactory as being told to sit down and be a good patient.
I’ll acknowledge that a certain segment of the MS population experienced significant and lasting improvement from their CCSVI treatments. I can’t explain that, and I don’t have any interest in doing so. To you folks, congratulations. For the rest of us, it’s time to move on.
With so many technological and organizational tools available to patients, so many lives being overwhelmed by progressive diseases, and a drug approval process that takes much too long, these patient-centered movements won’t stop. You can count on it.