This month, CCSVI exploded onto the MS radar screen, as the Canadian news media picked up on the story and the University at Buffalo released positive results from the preliminary stage of its ongoing imaging study (click here for more info). While the news that Multiple Sclerosis may in fact be of vascular origin has the potential to fundamentally change our understanding of the disease, the CCSVI story contains other vital lessons and implications for patients, researchers, and doctors alike.
Only 10 months ago, the buzz about CCSVI was barely a murmur. The research of Dr. Paolo Zamboni, founder of the CCSVI theory, was largely unknown, and the concept that MS might be a vascular disease would have been given short shrift by the vast majority of MS researchers and physicians. Remarkably, due to the efforts of a very small group of activist patients, led by the wife of an MS sufferer in California, that quiet murmur has grown into a tremendous roar, and rather than scoffing, even the most skeptical physicians are now being forced to take notice.
The uphill battle to get CCSVI serious attention was truly a grassroots effort, spurred on by patients and their loved ones desperate to find answers that mainstream medicine has been unable to provide. The story of CCSVI is one not only of scientific innovation and medical insight, but also that of the growing discontent that the MS community feels for the current state of MS treatments and therapies. To put it bluntly, the MS the status quo just ain't cutting it.
Upon diagnosis, MS patients are usually advised to go on the first-line MS drugs, the injectable interferons. These drugs leave many of those taking them feeling quite sick after every dose, and clinical trials have shown that they are only effective in about one third of the patients using them. Second line drugs, such as Novantrone and Cytoxan, are immunosuppressive chemotherapy agents known to be toxic, and have potentially fatal side effects. The newer drugs, such as Tysabri, show much greater treatment efficacy than the older drugs, but they too are immunosuppressive, and carry with them the potential for fatal complications, the risks of which appear to increase with the length of time patients continue treatment.
To my mind, despite problematic side effects, the greatest problem with these medications is that they all treat MS by suppressing or modulating the immune system. The fact is that an immune system gone awry is a symptom of MS, a disease whose origin remains unknown. I've used the following analogy before, and it is admittedly crude, but treating MS by suppressing the immune system is like treating a broken leg with painkillers. The symptoms are superficially addressed, but the root cause of those symptoms is ignored entirely. Yes, the current MS drugs can improve a patient's quality of life, and may slow down progression of the disease, but they do nothing whatsoever to address the still unknown underlying mechanism that drives the disease.
The palpable excitement about CCSVI in the patient population speaks volumes to the incredible frustration patients instinctively feel about the current state of MS care, and the desperate need for hope among MS patients. The Internet MS chat rooms and bulletin boards are overflowing with patients that are sick of being sick, and who feel trapped by a medical establishment that seems unable to address their fears and concerns, much less the debilitating illness they are forced to live with every day. They see pharmaceutical companies earning billions of dollars yearly marketing drugs that seem designed more for profit potential than for disease eradication, and doctors whose hands are tied as much by medical dogma as by the lack of treatment options available to them.
The rise of CCSVI should serve as a model of patient self advocacy, and illustrates the absolute necessity that patients educate themselves to the best of their abilities, and use the knowledge gained to intelligently question at a fundamental level the how's and why's of their treatment choices. Without the efforts of a few incredibly diligent and steadfast individuals, the CCSVI theory would still be languishing in the back pages of a few medical journals, and a theory with the possible potential to significantly alter the perception of MS could very well never have seen the light of day.
CCSVI may prove to be the Rosetta Stone of MS, or it could turn out to be just a curious piece in the MS puzzle. Regardless of the eventual outcome, the brave efforts of a handful of advocates have managed to shake up mainstream medicine, and have opened the eyes of researchers to concepts that had been either entirely neglected or never even previously examined.
A tremendous amount of research will now commence attempting to prove or disprove the CCSVI theory, and along the way many important discoveries, some having nothing to do with CCSVI, will undoubtedly be made. Monoliths such as the national MS societies and large-scale research organizations have been forced into action, all due to the hue and cry of a patient population brimming with righteous consternation.
As a community, those affected by MS must keep the momentum building, and actively take part in efforts to spark the flames of discovery. If you have the means, donate to organizations researching and advocating alternative MS treatment options. If you have the time and physical ability, volunteer to help further those efforts. At the very least, speak up to the powers that be and let your voice be heard.
As patients, we must be the straw that stirs the drink. As unfair as it may seem, the burden of forcing the action ultimately falls upon the shoulders of those that will benefit the most from that action. By simply shining a light on the path towards empowering the MS patient population, CCSVI is already a stunning success.