On Friends, Old and New

Image via Wikipedia

"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me"

-Brian Eno

There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in love with you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.

No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.

Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.

Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.

These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.

Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.

In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.

In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.

Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.

I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.

I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.

Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.

When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.

Some Comments on Comments, and Also on CCSVI

Earlier today I received the following comment from a reader, in response to my last post which dealt with the Merck Serono "kickback" lawsuit (click here):

"I find it ironic that you can talk about big pharmaceutical companies acting badly when you yourself are acting badly. Twice I have posted about my ccsvi experience, and because it was not positive you have not posted it. It has not been the answer for me and it will not be the answer for others. This site in part talked me into going for this procedure. This cost me well over $20,000 and did nothing. You are pushing this procedure and not telling the full story of its failures. I know that this will not be published as you are biased and selling this procedure just as a pharmaceutical company was selling rebif. I really thought you were different."

To be honest, at first I was somewhat taken aback by this comment, as I feel that I've always tried to present CCSVI in a rational and evenhanded manner, and have neither dissuaded or persuaded patients to undergo CCSVI treatment. If anything, I've urged caution, often to the chagrin of the fiercest CCSVI advocates, as I feel the science of CCSVI and its treatment are both very much works in progress. I also felt very sorry for the commenter, whose disappointment and rancor is obvious (please, dear readers, don't leave comments disparaging the person who wrote the above comment. Although I completely disagree with the gist of the statement, everyone is perfectly entitled to their opinion).

I then realized that the above statement affords me the opportunity to address just how comments on this blog are handled, and to state clearly and succinctly my feelings on the current state of CCSVI research and treatment.

The blogging platform I use (Google's Blogger) provides a variety of ways with which to deal with comments made on any individual post. The blogger (me) has the choice of moderating all comments (in other words, no comments can be posted without my seeing them first), moderating only comments made on older posts (such as posts more than seven days old), or not moderating comments at all (all comments are posted without my approval on all posts, regardless of when they were initially published).

When I started Wheelchair Kamikaze, I chose to not moderate any comments, as I believe strongly in free speech and welcome any and all opinions that my scribbles might elicit, both positive and negative. The only way we can truly learn and expand our minds is to listen to opposing viewpoints, and indeed many of the comments left on previous posts that did not agree with what I had written have given me much food for thought. As the popularity of this blog has grown, the amount of comments left after each post has grown with it, to the point where I am sometimes unable to address each and every comment left by my readers. I truly feel bad about this, but I do read every comment, and deeply appreciate all who take the time to contribute.

Unfortunately, about six months ago, several spammers started leaving irrelevant comments on dozens upon dozens of blog entries, hawking everything from wheelchairs to CCSVI treatment centers. As I am of the opinion that spammers are among the scum of the earth (not quite as bad as some health insurance or pharmaceutical company executives, but close), and don't want to subject my readers to such garbage, I felt compelled to start moderating all comments left on posts more than one week old. Readers are free to comment on new posts, completely unmoderated, for the first week they are published. After that, I get an e-mail notification of each pending comment, and have the option of publishing or deleting it. As a rule, I publish all comments, as long as they aren't vulgar or abusive, unless they come from spammers. The spam is quickly deleted, an action which delights me to no end.

The only drawback to this system is that occasionally the notification of a pending comment gets caught in my e-mail spam filter, and winds up in my "junk e-mail" folder. Since the junk e-mail folder usually contains nothing but (surprise!) junk, I usually don't bother checking it. Therefore, if any of you try to comment on an older post, and your comment doesn't show up after a day or so, please e-mail me at WheelchairKamikaze@gmail.com and I'll do my best to locate your wayward post. Of course, you can also try submitting the comment again, but if your first attempt got caught in my spam eater, there's a good chance your second attempt will also.

Now, on to CCSVI, a topic which only seems to be getting more controversial by the day. In recent weeks, we've seen a variety of studies released, some supporting the CCSVI hypothesis, and others refuting it. Amongst those supporting it, there have been some that argue for CCSVI as the cause of MS, and others concluding that the vascular abnormalities collectively known as CCSVI are more the result of MS, or perhaps exists as a comorbidity with the disease. Internet forums and Facebook pages devoted to CCSVI have been riven by arguments both for and against, often pitting patient against patient. Unfortunately, hyperbole often rules the day, with each side regularly making claims that simply can't be substantiated by the available science.

Meanwhile, as the scientists and patient advocates duke it out, thousands of desperate MSers are getting CCSVI treatment here in the United States and at various locations around the world. The technique used to treat CCSVI, venoplasty, is a minimally invasive procedure that involves snaking a catheter through a patient's veins to the point of blockage or narrowing, and then ballooning it open (in some increasingly rare cases a stent is used for this purpose). Although the procedure sounds simple enough, there is in fact a steep learning curve involved for the doctors performing it, and there has yet to be standards of practice agreed upon by all specialists. Some interventional radiologists use larger balloons than others, some check more veins, some use stents more frequently than others, and the "aggressiveness" of treatment varies from physician to physician.

Despite the overwhelmingly positive patient reports that flood the Internet, the results of the CCSVI treatment procedure are actually quite mixed. Many patients do indeed find lasting benefit after going through venoplasty, but as is evinced by the reader comment that prompted this post, a sizable number of patients receive no relief at all after CCSVI treatment. Many others find temporary relief, only to face the crushing disappointment of a return of their symptoms when their veins revert back to their blocked or narrowed state (a situation dubbed "restenosis"). Some treated patients have developed blood clots or scarring in their treated veins, situations which are extremely difficult to resolve, and which can effectively shut down the affected vein for good. When reading patient reports on the Internet, or viewing them on YouTube, it's very important to keep in mind that most patients who are treatment "failures" don't make videos or write testimonials. It's simply human nature to shout our triumphs from the hilltops, but to keep quiet about disappointments.

The only thing that anybody can state for sure about CCSVI at this time is very little regarding the topic can be stated for sure. While it does look like there is a correlation between abnormalities in the veins that drain the central nervous system and multiple sclerosis, the question of cause or effect is far from decided. Furthermore, the prevalence of such abnormalities in the healthy population has yet to be properly quantified. Some studies suggest that as many as 25% of the population have venous abnormalities which would qualify for CCSVI, but show absolutely no ill effect. As shocking as it may seem, the human venous system associated with the central nervous system has been so little studied that no reliable definition of "normal" actually exists. Until now, the arteries, responsible for heart attacks and stroke, have received all the attention, leaving venous anatomy largely unexplored.

Further complicating the picture is the relative high cost of the procedure. Patients traveling abroad are typically paying about $10,000 for the procedure alone, without travel expenses figured in. Patients in the US, getting treated domestically, have in large part been finding their treatment covered by private health insurance. Unfortunately, that situation seems to be changing, as one of the major private insurers has started to reject CCSVI treatment claims, and there are reports that Medicare is now also refusing to pay for the procedure. Given the high rate of restenosis, and the wide disparity in treatment outcomes, patients need to seriously consider whether waiting for both the CCSVI science and treatment procedure to mature may be in their best interest, especially if they will be paying out-of-pocket.

My personal opinion is that MS is a very complicated beast, and in fact may not be one disease at all, but a collection of related maladies that share common symptoms and diagnostic criteria. The causative factors of MS very likely differ significantly from patient to patient, and almost certainly include genetic predisposition, infectious factors, toxins, and, in some cases, vascular abnormalities. Just as none of the existing MS drugs works on every MS patient, so too the impact of CCSVI will almost certainly vary from patient to patient. For some patients, CCSVI may be THE predominant factor in their disease. In others, the condition may play no role whatsoever, even if their veins do display abnormalities (remember the high likelihood that some healthy people display similar abnormalities).

As it now stands, each patient must educate themselves as fully as possible, and honestly assess the risk/benefit equation for their own particular situation, trying their best to understand the existing realities despite the fog created by conflicting media reports and Internet hyperbole. One of the best ways to do this is to listen to the researchers exploring CCSVI, and the doctors performing the CCSVI treatment procedure. Thanks to the magic of the Internet, patients can do just that. Recently, the scientists at the Buffalo Neuroimaging Analysis Center held a town hall meeting during which they detailed the findings of their ongoing CCSVI studies. Videos of the presentations given are now available on the BNAC website (click here). The Hubbard Foundation, another organization actively researching CCSVI and organizing CCSVI treatment trials, also recently put on a patient education forum, the videos of which can be accessed (here). Both sets of videos should be required viewing for anyone interested in CCSVI.

I'll leave you with a video interview, conducted by the CCSVI Alliance, with one of the most experienced CCSVI treatment practitioners, Dr. Gary Siskin. Dr. Siskin's insights and advice are invaluable, and his sober approach to CCSVI is necessary and refreshing. As Dr. Siskin says at the end of his interview, "Anybody who says they know everything about CCSVI is probably not telling you the truth, because the level of knowledge just hasn't gotten there yet…"

Big Pharma Behaving Badly (And Making Me Want to Vomit)

Image by BlueRobot via Flickr

Sorry about the nauseatingly graphic nature of the title of this post, but the following info makes my head explode.

Pharmaceutical industry giant Merck Serano this week paid $44.3 million to settle a lawsuit alleging that the company paid kickbacks to MS neurologists for prescribing its blockbuster MS drug, Rebif (click here). The scam allegedly included hundreds of doctors, and seems to have been centered on the Consortium of Multiple Sclerosis Clinics (CMSC), a nonprofit corporation that is supposed to help educate patients. Among its other activities, the CMSC administers the quarterly NARCOMS surveys, designed to build an ever growing database on MS and its effects on patients, which are diligently filled out by thousands of multiple sclerosis patients, including, until now, yours truly.

The lawsuit was brought by a former Merck Serano employee turned whistleblower, who was fired by the company after expressing disbelief that such underhanded and blatant misdeeds were going on with the company’s full knowledge and participation. The entire lawsuit document is available online (click here), and to save you the trouble, the good stuff starts on page 6.

We're not talking nickels and dimes here, but huge chunks of cash, on the order of $25,000 a pop. The CMSC allegedly funneled over $500,000 to various doctors, effectively operating as a money-laundering outfit for Merck Serano, and the fact that the company settled for $44 million indicates this disgusting scam went far deeper than what is apparent in the legal document. Unfortunately, by settling the lawsuit, Merck Serano has effectively prevented all of the gory details from coming to light, as would've been the case if the suit had been brought to trial, and thus become public record. The settlement covers fraud charges regarding Medicare and Medicaid, but what of the patients that may have been steered into injecting themselves with a drug that might not have been their best choice by scoundrels in white lab coats more intent on stuffing their pockets than following the Hippocratic oath? Where is their justice?

Coming at a time when trust between neurologists and their patients has become frayed due to the CCSVI controversy, the revelations provided by the lawsuit and subsequent settlement are especially revolting. It is simply outrageous that a drug company can get away with paying physicians kickbacks for prescribing drugs with what amounts to a slap on the wrist. The terms of the settlement, $44.3 million might sound like a sizable sum, but considering that sales of Rebif exceed $1 billion a year, the penalty is miniscule. Additionally, this is most likely only a quick peek under a very big rock, and it is just a glimpse at goings-on that would shock and dismay the legions of desperate patients who are the real victims of these disgusting, dishonest, and deceitful practices.

Before being forced out of work due to disability, I was employed by one of the huge worldwide entertainment conglomerates, which included in its portfolio some of the biggest record labels on the planet. In the music industry, what Merck Serano is guilty of is referred to as "payola". Simply put, payola is the practice of paying disc jockeys, radio station program managers, and other "hit makers" to play and promote the songs of a music company's artists. Back in the 50s, payola brought down the careers of some of America's top DJs, and to this day people go to jail when found guilty of the crime.

Now, what's more harmful to society, a music company paying radio stations to play the latest Beyoncé single (I'm just pulling an example out of thin air here, not accusing Beyoncé or her record company of anything) or a drug company paying doctors to prescribe their products to desperately ill patients? The rancid stench of greed and avarice has infected many of our most important societal institutions. After reading the above allegations, can any patient truly trust that their doctor has no ulterior motive as he scribbles the name of some drug on his prescription pad, very often in an office whose walls and shelves are filled with posters and promotional products handed out like shiny trinkets by pharmaceutical company representatives? That swirling sound you hear is the ethics of an entire society going straight down the toilet.

The fact that this case was settled, and not brought to court, ensures that the names of most of the players will not be revealed. I'm tempted to reveal those named in the lawsuit here, but as a settlement was reached, and no verdict of guilt ever handed down, they remain simply accused, not convicted. My personal ethics therefore prevent me from slandering those who might not be guilty as charged, however unlikely that may be. That's not to say that you shouldn't click the link (here it is again), read the lawsuit, and find those names for yourself. In fact, I wholeheartedly encourage you to do so.

Every single doctor and medical professional who received any of these tainted funds, or participated in distributing them, should be named, shamed, stripped of their licenses, and thrown in jail. They're a disgrace, each a pustule on the ass of humanity, and deserve nothing more than humiliation and degradation. Unfortunately, thanks to the niceties of a system that too often protects those in positions of power at the expense of the regular folks who rely on them, the scoundrels involved will remain anonymous, free to enjoy the fruits of their despicable actions. Despite our high-minded ideals of justice for all, far too often there is justice for none.

As for those involved in this medical and legal debacle, and the many other similar cons we will likely never hear about, may their eyes fall out. Bastards.

Related articles

• Merck Serono pays $44M to settle kickback charge (seattletimes.nwsource.com)
• PRESS RELEASE: Pharmaceutical Giant, Serono, Agrees to Pay $44.3 Million to Settle False Claims Act Case (fredericacade.wordpress.com)
• Georgia joins $44.3 million pharmaceutical settlement (ajc.com)

CCSVI As Punk Rock

Image via Wikipedia

I Want To Be Anarchy.

This was the battle cry of a generation of young rock ‘n rollers, who, in the late 1970s, donned black leather jackets, cut their hair short and spiky, picked up instruments they barely knew how to play, and declared war on a bloated music industry establishment. Sick of having music shoved down their throats by corporations that had become self-reverential and complacent, they decided to take matters into their own hands, and by doing so changed the course of rock 'n roll history.

After the incredibly vibrant and creative 1960s, which saw rock 'n roll evolve from a teenybopper fad into a multifaceted and sometimes profound art form, by the mid-1970s music seemed to be suffering from a particularly brutal hangover. Dominated by bands that had become behemoths, and musicians who had come to view themselves as royalty, rock 'n roll had changed from the soul of a youthful revolution to the sound of cash registers opening and closing. Sure, there were exceptions, but they were few and far between, followed by pockets of ardent fans but stuck in relative obscurity. Record companies barely supported the likes of David Bowie, Iggy Pop, The New York Dolls, and T Rex, preferring instead to throw their money and marketing might behind safer, less challenging acts, but in doing so stripped the passion out of an art form that had been born of it.

The Multiple Sclerosis establishment found itself in a vaguely similar position in 2010. Prior to the late 1980s, decade after decade of investigation had been spent making absolutely no headway against the disease, despite the best efforts of researchers. These were the dark ages, a gloomy time for patients diagnosed with MS, during which the disease was considered a "diagnose and adios" malady. There was precious little doctors could do for their desperate patients except wish them well. Researchers primarily concentrated on looking for an infectious cause to the disease, with a few suggesting that the vascular system may somehow be implicated. Despite the occasional report of a breakthrough, none ever panned out, and patients and their doctors were left with little option other than to simply watch the disease take its insidious toll.

In the 1980s, things changed. The theory of autoimmunity, which posited that for reasons unknown a patient's own immune system goes on a cannibalistic attack, destroying a body's own central nervous system tissues and resulting in the telltale signs of MS, took hold and started to grow roots. By the late 80s a substance known as beta interferon, thought to somehow modulate aberrant immune systems, was in full clinical trials on MS patients. These trials proved successful, even if only moderately so. A statistically significant percentage of patients with relapsing remitting disease were shown to suffer less relapses while on beta interferon drugs, and their MRIs displayed fewer areas of disease activity. It was hoped that this would translate into the delay or even cessation of disability progression, but at the very least these new drugs did increase the quality of life for some of the patients taking them, and physicians finally had a weapon in the fight against the disease.

As the autoimmune theory became more entrenched, MS research started focusing almost exclusively on finding better and more powerful methods of suppressing the human immune system. This led to the creation of new classes of drugs which suppress various parts of the very intricate and not fully understood immune system, substances which show more efficacy than the interferons in treating the symptoms of MS, but also carry with them the specter of serious and sometimes deadly side effects. While these drugs, too, have had a profound effect on the quality of life of some of the MS patients taking them, none address the still unknown root cause, or causes, of the disease. Problematically (for patients hoping for a cure, at least), MS drugs have become financial blockbusters, transforming multiple sclerosis into an $8 billion a year industry, a financial windfall which has further focused the attention of researchers on tinkering with the immune system rather than finding out just what causes it to suddenly turn upon the body’s own cells.

Back in the late 70s, restless kids fed up with the pablum being pumped out by the music industry (appropriately dubbed "corporate rock") started to create their own music. Though their output may have been technically less than masterful, the raw passion, emotion, and soul poured out by bands such as The Sex Pistols, The Clash, and The Ramones more than made up for their musical deficiencies. Combined with sarcasm, swagger, and a loud disdain for the mainstream (one of the seminal albums of the time, by The Dead Boys, was appropriately entitled "Young, Loud, and Snotty"), the brashness of these young punks was startling, and set the mainstream back on its heels.

Their popularity primarily still confined to the musical underground, the antics, in-your-face behavior, and outrageous attire of the early punks soon grabbed the attention of the media, who at first treated them with derision, as did the corporate giants the punks were attacking. Initially shrugged off as troublesome outcasts, many pundits predicted their quick demise. Instead, punk thrived and only gained in popularity, spawning a vibrant counterculture whose ethos spread from music into the visual and cinematic arts. Due to the popularity of a new communications entity, MTV, punk music and fashion spread quickly from the cities to the suburbs, and soon the major labels were scrambling to sign and market their own punk bands, now labeled under the more palatable moniker of "New Wave".

Late in the first decade of the 21st century, the Multiple Sclerosis establishment likewise found itself confronted with a radical new idea, called CCSVI. This hypothesis, first put forth by the Italian vascular surgeon Dr. Paolo Zamboni, states that blockages in the veins that drain the central nervous system either cause or contribute to the neurodegenerative disease we know as multiple sclerosis. Furthermore, Dr. Zamboni's initial trials showed that opening these blockages, using a relatively simple and minimally invasive procedure, seemed to dramatically relieve the symptoms of MS, suggesting an entire new avenue of investigation into the disease. At first, Dr. Zamboni's findings got very little attention, outside of a small group of patients keenly debating the relative merits and demerits of the idea on a small Internet MS forum. Soon enough, though, the Canadian media picked up on the story, and all hell broke loose.

Rather than approach the idea with open-minded scientific curiosity, the MS establishment initially tried to dismiss the idea of CCSVI as absurd, some going so far as to label it a "hoax". MS patients reacted with indignant fury, the pent-up frustrations of years of being treated with hyper expensive and nominally effective treatments that do nothing to address the essence of what's making them sick exploding like Krakatoa, creating a medical tsunami the likes of which had never before been seen. Carried along by new social networking tools such as Internet patient forums, blogs, and Facebook, the MS establishment could do nothing to harness the growing CCSVI movement, a patient driven initiative that forced the issue as patients took matters into their own hands and began traveling abroad in pursuit of CCSVI treatment. In the United States, Interventional Radiologists, the doctors who specialize in the catheter procedures used to treat CCSVI, soon started taking notice, treating MS patients for the blockages that were indeed been found in their veins. Though far from universally successful, anecdotal evidence does seem to indicate that treating CCSVI does, at the very least, relieve some of the symptoms experienced by some MS patients.

As the 1980s evolved, punk evolved with it. While mainstream rock acts still commanded a lion's share of attention, new bands, deeply influenced by the original punk rockers, burst onto the scene, and gained in popularity. Slowly, what once seemed cacophonous, outrageous, and even obscene began to be absorbed into the mainstream, and the lines that separated rock 'n roll genres began to blur. Though the revolutionary vitality felt by those in the center of the storm in the late 70s and early 80s was largely gone, and punk rock's fangs had been filed down, by 1993 punk reigned supreme as it flooded the airwaves and music stores under the new banner of "Grunge", a development that the leather jacketed, safety pinned, and spiky haired kids 15 years before could never have even imagined. These days, the children of the original punks listen to modern music that would not exist if it weren't for long gone bands that they've barely heard of, largely unaware of the history behind the music.

The future of CCSVI is likewise beyond prediction. There is much still to be learned, both about the condition itself, and how best to treat it. The significance of CCSVI in the big picture of MS still needs to be determined. Despite the hopes of the most fervent CCSVI supporters that it will prove to be THE cause of MS, and the doubts of the naysayers who claim it has no significance at all, the truth will likely fall somewhere in between, and could very well vary from patient to patient. For some, CCSVI may play a dominant role in their disease, for others it may play no part at all. Current treatment protocols need to be standardized and perfected, as we currently see too many problems with restenosis, clotting, and the occlusion of treated veins, but eventually these issues too will be worked out.

Perhaps what's most important, though, is the tremendous upsurge in patient self-advocacy, education, and empowerment that has been the product of the intensity of the CCSVI debate, which has quite possibly changed forever the dynamic of the patient-doctor relationship. No longer will we as patients be dictated to, but partnered with. Knowledge that was once the province of an anointed few is now open to the masses, a development with repercussions that may take many years to resolve. New generations of doctors will undoubtedly be more open to this changing dynamic than the old guard, but Pandora's box has been opened, and for a while, it seems that anarchy will have its day. Punk rock and CCSVI, Viva La Revolucion!

Related articles

• The Rorschach test of CCSVI research (macleans.ca)