Image by soukup via Flickr
Over the last several months, many of the Internet MS forums, chat rooms, and social networking sites have become places of sometimes heated conflict, in large part due to the extremes of emotion brought about by the topic of CCSVI. In general, open debate is a good thing, as it allows for the formation and refining of informed opinion, but in some cases, on both sides of the argument, I've seen statements presented as fact which simply aren't so, and an escalation of rhetoric that rather than adding clarity to the issue begins to obscure it.
Given the potentially dreadful outcomes of Multiple Sclerosis, and the raw emotion that such prospects engender in those that suffer from the disease, it's not surprising that disagreements can often become heated. As regular readers of this blog know, I believe there is much merit to the CCSVI hypothesis, but I'm also cognizant of the fact that the theory is likely not THE one and only answer for the majority of MS patients. For a select few it may be, but for most it is likely a piece of a very complex puzzle; just how large a piece has yet to be determined. Here then, are some of the more commonly seen hyperbolic statements made about the CCSVI and its ancillary topics, and an attempt at taking a reasoned approach to them.
"CCSVI cures MS/CCSVI is a hoax" - these are two sides of the same coin, the utopian/dystopian opinions on the subject. Let's take a look at the negative statement first, as it borders on the truly ludicrous.
When the CCSVI hypothesis first surfaced in the mainstream MS community, roughly 18 months ago, several prominent neurologists and representatives of the MS societies went on record stating that the theory had no validity whatsoever, and that patients were foolish to be wasting their time, emotion, and money pursuing the issue. These statements were made, I suppose, based on an instinctive defense of territory, and a very rigid adherence to traditional MS dogma which states that MS is an autoimmune disease confined to central nervous system, caused by an immune system that, for reasons unknown, has taken to attacking a patient's own cells. Unfortunately, this autoimmune model of the disease, which has held sway for over two decades, has done little to advance the cause of curing MS. It has, though, led to the production of a family of high-priced drugs that modulate or suppress the immune system which do increase the quality of life for a percentage of the patients taking them, but do absolutely nothing by way of offering a cure.
One would think that MS neurologists, as scientists devoted to unraveling one of the most cryptic of medical puzzles, would have their interests piqued by such an outside the box take on the disease. Instead most turned their noses up to it as if it were a lump of feces served on a dinner plate. I can find no logical defense for this stance, as, with the best interests of their patients in mind, the MS establishment should have urged effective trials of the CCSVI hypothesis to be undertaken with great haste, to either prove or disprove CCSVI as quickly as possible. If proven right, the doubters could have quickly put a stake in the heart of CCSVI and moved on; if proven wrong, they would have ample reason to reassess their position and let the revolution begin. Either way, although the majority of evidence in favor of the hypothesis was and still is mostly anecdotal, the promise of a safe and effective new treatment and the potential of an entirely new way of looking at MS, developed by a reputable physician, should deserve serious scientific consideration.
On the flipside, some of the most fervent CCSVI advocates portray the hypothesis as a breakthrough cure for MS, a viewpoint that, while possible, simply isn't supported by the weight of the currently available evidence. A growing body of anecdotal reports certainly indicates that clearing blockages in the CNS associated veins of some MS patients provides relief of symptoms, but the degree of relief varies widely from patient to patient, and a signifiant number of patients experiences no relief whatsoever.
Although this lack of effectiveness of CCSVI treatment in some patients is of course disappointing, it really shouldn't be surprising, as we do know that MS presents itself very differently from patient to patient, and gets increasingly more difficult to treat the longer the duration of the disease. Different subpopulations of patients almost certainly have different disease triggers, and there's the distinct possibility that what we call Multiple Sclerosis isn't really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles. Vascular issues may play a large part in the disease of some patients, but a much smaller role, or no role at all, in the disease of others. There is still much to learn about CCSVI, and we don't yet even know the prevalence of the venous abnormalities collectively known as CCSVI in the healthy population. Stating anything about CCSVI, pro or con, with unequivocal certainty only sets one up to be proven wrong.
"MS is a vascular disease! Neurologists should step aside!" - It's easy to understand the frustration that many patients have with their neurologist, and neurology in general, over the CCSVI issue. Though one wouldn't expect neurologists en masse to wholly embrace the theory, the ham-fisted stonewalling experienced by many patients at the hands of their doctors has quite understandably left many angry and disgusted. Still, even in a best case scenario in which CCSVI proves to be a major key to unlocking the MS puzzle, neurologists would continue to have a major role in treating the disease. In such a rosy scenario, two possibilities present themselves: MS is a vascular disease with neurologic implications, or it is a neurologic disease with vascular implications. In either case, neurologists would remain a significant part of the picture.
Many of the interventional radiologists (the physicians who perform the CCSVI treatment) I've talked to describe themselves as medical plumbers. Their specialty is unblocking and fixing defective veins and arteries. They readily admit to having little or no knowledge of the neurologic implications of the venous abnormalities they're encountering in MS patients, they are simply attempting to fix what they see as broken vasculature and disrupted blood flow. Time and time again, the IRs doing CCSVI treatment have called on neurologists to join them in an interdisciplinary investigation of the hypothesis, for the very reason that the expertise possessed by neurologists is necessary to unravel all of the questions surrounding CCSVI.
As noted above, many MS patients are proving to be non-responders to CCSVI treatment. Their stories aren't heard much on MS forums or Facebook pages, and very few are making YouTube videos saying, "Look at me, I'm a CCSVI loser", but there are many MSers who have undergone venoplasty and experienced little or no benefit. I receive a steady stream of e-mails from some of these patients, perhaps because I too underwent the procedure but didn't experienced benefit (not that this has soured me on trying again, as I consider my procedure a "successful failure" (click here), and I expect to give it another go within the next few months).
Certainly, for patients who don't respond to CCSVI, neurologists will continue to play the primary role in treating their disease. Even in the case of CCSVI "hyper responders", in whom the treatment procedure works wonders, neurologists will be responsible for monitoring and treating the residual neurologic damage that will almost inevitably remain even if their disease has been eliminated. Unless caught in its earliest stages, MS does damage to nerve cells, which have little capacity for healing. Once damaged beyond a certain point, cells in the CNS do not regenerate, which is why those who suffer brain or spinal cord damage due to accidents or stroke rarely recover all of their lost abilities. MS patients with significant long-term mobility and/or cognitive issues would be left with serious neurologic deficits even if the MS disease process could be completely stopped by addressing their vascular issues. The advancing science of neuroprotective and neuroregenerative medicine falls squarely in the province of neurology. Therefore, like it or not, neurologists will remain a prominent part of the MS picture, regardless of the eventual success or failure of CCSVI.
"All trials done by researchers with connections to pharmaceutical companies should be disregarded" -On its face, this statement would seem to make sense due to the perceived conflict of interest of the researchers involved, and it's become the rallying cry against all published research with negative implications for CCSVI. The typical reaction sequence goes something like this: someone will post news of a research report critical of CCSVI on an MS forum, and within minutes other posters will report on the pharmaceutical company ties the researchers behind the report inevitably have. Case closed, the researchers were biased, and the trial results should be relegated to the trash heap.
The unfortunate truth, though, is that if all medical research done by investigators with ties to Big Pharma were to be disregarded, there would be practically no medical research left to ponder. The tragically dysfunctional medical research model that has evolved in the past several decades relies on Big Pharma to fund the vast majority of medical research trials. Furthermore, the tentacles of Big Pharma reach far and wide, their suckers touching almost all researchers and research facilities. The only entities completely untainted by pharmaceutical moneys are government and some academic facilities, both of which are woefully underfunded given our deficit laden government and the economic limitations of privately funded academia.
Given such a research milieu, it's almost impossible to find late stage medical research that is free from the taint of pharmaceutical financing. Almost all prominent researchers will have at some point in the careers been associated with pharmaceutical or medical device companies. This includes the heroes of CCSVI, the interventional radiologists. Just as there is stiff competition among pharmaceutical companies to woo neurologists to prescribe their immensely profitable drugs, medical device companies compete to get physicians to use their catheters, angioplasty balloons, and stents. Such are the realities of a medical industrial complex that feeds on the plight of patients. Let's not forget, too, that there is potentially a tremendous amount of money to be made treating CCSVI. The profit motive cuts both ways. We are already seeing the beginnings of aggressive marketing campaigns being conducted by CCSVI clinics in competition for patients, a development that will likely only increase as time goes on.
"Throw out your MS drugs; they're all snake oil and poison" - I'm no fan of Big Pharma and many of the products they produce. As for-profit public corporations, the big pharmaceutical companies are legally mandated to be beholden to their shareholders, not to the patients who take their products. Thus, the primary goal of any pharmaceutical company CEO is to increase their company's bottom line, a goal that is often at odds with that of finding cures, the development of which would effectively eliminate the consumer base of the company’s products. Multiple Sclerosis is now an $8 billion a year industry, and MS patients on disease modifying drugs have become indentured servants to the companies that produce MS medications.
That said, the current crop of MS drugs do increase the quality of life for a significant percentage of the patients taking them. No, they do not cure the disease. It is uncertain as to whether or not they even slow the progression of disease, as research can be found to support both sides of this issue (for "con" click here, for "pro" click here, here, and here). They do, however, cut down on the relapse rates of patients with relapsing remitting disease, in some cases to a dramatic degree. Since MS relapses can leave a patient incapacitated or days, weeks, or months, relief from them is no small achievement. This benefit does come at a potential price, as all of the MS drugs carry with them a wide range of side effects, and it seems the more effective a drug is, the more horrendous its potential side effect profile becomes. Still, many patients refuse to come off of these drugs despite the risk involved, due solely to the vast improvement they've seen in their quality of life as the result of having taken them.
Twenty years ago, MS was a "diagnose and adios" disease, one which physicians had almost no weapons to combat. For patients with RRMS, that picture has changed dramatically, even if the drugs now available are flawed, some deeply so. Progressive patients still have very little in the way of effective therapies, and their treatment options remained primarily those of basic symptom management.
MS is a terrible disease, a hateful and frightening thing that those who suffer from it, and those who love them, universally detest. My fondest desire is to see CCSVI fulfill its potential. But raising the bar to impossible heights, or making well-intentioned but reckless statements may only serve to impede the progress of CCSVI advocacy. Hope is a wonderful and vital commodity, but in matters so precious, it must be tempered by reason.
I've recently been working, along with several other MS bloggers, with a healthcare advocacy website called WEGO Health (click here). WEGO Health is conducting a study on people’s use of new technologies for health and they need your voice to understand the potential of technology to empower patients.
The survey will take about 10 minutes (you can stop anytime & come back later). All completed survey responses will be entered into a drawing to win an iPad, one of three iPod Touches or one of 200 iTunes gift cards. Everyone will receive a report on our survey findings.
This survey is only open until Friday, March 4, so if you'd like to help, please do so soon.
To take WEGO Health’s Health Technology Survey (click here)
Keep being the voice of reason for us, Marc. That you also have the capacity to do so with compassion gives me hope that we will navigate successfully this bramble path that is the MS journey.ReplyDelete
You are indeed the most eloquent voice of reason I have heard [besides mine...IMHO..lol].
I find your style and approach both refreshing and brilliant and wish to help. I see we share some of the same friends.
Initially I came out with verbal guns ablaze attacking big pharma, the NM$$ and other convenient obvious targets such as the easy target Neurologist. Now realizing that perhaps that it is not the best approach to achieving the ultimate goal of a level playing field.
I share your opinions that it is a 'piece' of the larger puzzle involving the entire rather complex human anatomy with its many interweaving systems that we as mere humans have divided into 'competing schools of myopic thought'. There is a lot of passion, pride and of course currency involved in the bottom line bow we so love to wrap our eloquent musing with.
I have managed to somewhat gain the respect of a 20,000+ member community PLM [Patients Like Me] through my primary passion to foster faith amongst the 'physically challenged' world since 1989. It still is my primary focus as we will all leave these disposable bodies someday within the next 100 or drastically less years.
I also have had the CCSVI treatment January 25, 2011 with rather remarkable results [so far] at virtually no cost [given my current state of ms induced poverty]. I am walking, talking, thinking and writing with a clarity that is bordering on euphoric. I am also free of the nagging body aching pain that had afflicted me for the past 25 years.
I am also on FB involved in several groups and looking to have an impact on the world of CCSVI in my efforts to get this 'mainstreamed'
Having been trained by the finest of Big Pharma schools "The Mass College of Pharmacy" 1973-1978 although tragically falling 1.7 points short of passing the most critical third trimester of pharmacology thus rendering my 217 credits useless....TG
I enjoy my life as currently constituted and should not grouse about lost opportunities to have one of the most boring, stressful, meaningless jobs on the planet. [all apologies to my pharmacist friends who are financially compensated for their pain]
How can I help us achieve our goal?
Thanks for another top article Marc. I have again been reminded of the importance of Neurology in CCSVI. The outcome variance is going to require the skill of CNS testing people to determine what is happening with the outcomes of CCSVI treatment to take the 'why' out of the varying outcomes, and to support people like our friend Dr. SReplyDelete
I have recently posted on TiMS on Dr. Flannagans site a brief of his findings and learnings that are worth more credit I believe. He has looked at the range of causes for slow or restricted blood flows and their origins.
I believe that his theories need to be seen by more people who can take his observations further. Could you give some time to assessing the value of his knowledge with the possibility of spreading the word.
I have condensed a brief overview with reference to his blogs in TiMS at; http://www.thisisms.com/ftopic-14005-825.html
Take care my friend, Nigel Wadham. NZer1
One further comment for those lurking, it is my belief that CCSVI is tip of the iceberg and a large step in the right direction for many de-generative diseases and disease blamed on the auto-immune model of disease origin.ReplyDelete
The flow of blood exiting the brain has now been noticed to cause symptoms when there are malformations in the access-able veins to angioplasty.
There is a wealth of possible other causes for blood flow insufficiency.
The possible causes of blood flow restriction need open minds and new technology to get the next levels of understanding underway.
From down under, Nigel Wadham. NZ
An excellent post, very balanced.ReplyDelete
Thank goodness for your voice out there, Marc, and I'm glad to hear you're going to try CCSVI treatment again. I am one who had only minor results from my CCSVI venoplasty but I'm not discouraged and have been awaiting further developments before considering it again.ReplyDelete
I've always looked at alternative treatments, accepting some, (LDN and diet,) and rejecting others, (bee-sting therapy.) Similarly, I initially tried some standard treatments, (prednisone and copaxone) and rejected others, (the depression-causing beta-interferons and now things like Tysabri.)
I'm optimistic about CCSVI venoplasty and not just because it seems to be giving considerable relief to about 1/3 who are treated. As one with PPMS, I may never duplicate the best successes of this new finding but I'm confident that the research will eventually throw some light on my situation.
We need to find the people, medical and otherwise, who will partner with us in our search for healing. I'm convinced that Norman Cousins had a handle on something really valuable when he advocated for daily laughter and I make sure I get plenty.
It's much better to hang with people who are reasonable than to get dragged down by the negativity in knee-jerk reactions to those we perceive as "the enemy." I'm sticking with you, kid!
great commentary as alwaysReplyDelete
I'd say this is the best blog on the web but that would be hyperbolic! ;)
I sometimes err on the side of declaring it a break-through cure. Since my procedure, my husband keeps using the word miracle....
Many hopes that your second procedure will be soon and will be successful.
Judy-thanks for your kind words. Far too often compassion is missing in the squabbles that breakout amongst MS patients on the Internet. I always try to keep in mind that we are all in this together, and that everyone on these boards is a sick person.ReplyDelete
Bill-thanks for your praise, and it sounds like you are doing some very good work on behalf of people with disabilities. I think the best way to help each other would be to continue to spread the word, to educate and advocate to the best of our abilities, and to never lose touch with the human side of the story. Thanks for your comments, and I'm glad that CCSVI treatment worked out so well for you.
Wheelchair-thanks, your comments are always very valued.
Daphne-here's looking at you, kid. The last sentence of your comment just reminded me of Bogart. It's important to look at alternative treatments, and to keep an open mind, because the mainstream treatments are nothing to write home about. Many of those we perceive as "the enemy" are actually good people doing their jobs to the best of their ability, caught up in a horrendously dysfunctional system. That's what's so maddening about the situation, we've evolved a system that just doesn't work.
Cece-thank you so much for your hyperbolic praise, that's the kind of hyperbole I don't mind. Really, though, there are many other terrific blogs on the web, I'm fortunate to have "caught the tiger by the tail". I'm thrilled that your procedure went so well, if only we could figure out a way for it to work as well for all MSers!
Marc, thank you for yet another well reasoned post. Your blog has brought a new level of ease to my attempts to understand the pros and cons of all the meds and proceedures that are out there now.ReplyDelete
Next year will be my 20th anniversary with MS, and yes, I am still fighting it.
As always, all the best to you and Karen. You are in my thoughts and prayers.
As usual WK, this is a logical and rational view of the often heated debate surrounding the theory of CCSVI and its involvement in the collection of neurological symptoms we call Multiple Sclerosis.ReplyDelete
I suppose what irritates me more than anything else is the role of the press in perpetuating the hyperbole and inaccuracies. In the past few months some of the fragments of articles that have needled me most are: MIRACLE CURE, blood flow to the brain, CCSVI cures MS, QUACKERY, false hope. I’d like to look at each in turn and make a comment about what I find irritating about them.
MIRACLE CURE: No respectable doctor or surgeon has ever suggested that treating CCSVI would cure MS, what they do say and what more reasonable people would agree with is that good circulation is an essential part of good health. Without good circulation your organs and tissues die. Irrespective of your symptoms neurological or otherwise, good circulation is essential. Even if the only benefit obtained from CCSVI intervention is warm feet, then the procedure has succeeded in restoring good circulation. Not a miracle but a definite health benefit.
Blood flow to the brain: this inaccuracy is not a headline, but often found in the body of news articles and demonstrates that people often do not have a basic understanding of physiology or of CCSVI. Reporters have a responsibility to society to report accurately on facts if nothing else.
CCSVI cures MS: CCSVI does not cure MS, CCSVI is the condition not the treatment. Is it sloppiness or laziness that leads people reporters included, to use CCSVI as a short form for CCSVI treatment. As much as I dislike the word Liberation which in itself is misleading, I prefer it to the perpetuation of the idea that CCSVI is the cure. CCSVI treatment may be a partial cure, but CCSVI is the condition and will not cure anything without treatment.
QUACKERY: I heard this term bandied yesterday by a doctor in a hospital in relation to CCSVI. Doctors, you would imagine, should be aware of basic information regarding physiology and even the history of such a significant disease as MS and understand that there is nothing irrational about the theory of vascular involvement in any disease let alone one which has a long reported association with vascular phenomena. Is this xenophobia – we have all heard the outrageous and insulting comments made about Paolo Zamboni comparing him to a refrigerated desert or four wheeled vehicle salesperson? Is this fear of loss of status or income? Is this fear of creative thinking? Is this fear of peer ridicule?
False hope: Ah! Now, this is something I intend to expand upon one day. I hear this so often… Usually not from people with that collection of neurological symptoms we call MS. It is usually something invoked by detractors of the vascular theory. To hope is human, most people with MS symptoms will know that there are no guarantees, and that they might not get the same results they have heard other people benefit from. But they are willing to take the chance. It is undeniable that if things do not work out the way we would like them to, we will be disappointed. But what is new about that? People with MS symptoms are always being disappointed… There is always hope, and by its very nature it cannot be false. Hope is something that lives in our dreams and imagination. It cannot be manufactured outside our own consciousness, we have to take responsibility for our hope and not place it on some outside event such as a plausible theory. We cannot use FALSE HOPE as a reason not to investigate and treat CCSVI.
I can't comment on the validity or invalidity of the latest study that came out against CCSVI as being a possible cause for MS, but I can point to the authors of the studies and their ties to all the pharmaceutical companies that make the handful of MS drugs. When authors have board positions on those companies, I can't help but wonder about how the tests were conducted. Call it a healthy skepticism.
What we are seeing now is an old cancer drug making a resurgence as a "new" MS therapy. And with that is the push for a new, higher price tag. People with MS have enough to deal with, trying to find ways to pay for their ever-increasing therapies should not be one of them. But in our for-profit system, it is.
This is happening with campath which is now being marketed as Lemtrada. It has yet to be approved by the FDA, but the gears are in motion as this drug was part of a negotiating point as Sanofi was in a hostile take over with Genzyme. They came to an agreement with Lemtrada as part of a future pay-out.
The amount of campath/Lemtrada an MS patient would need is far below what a cancer patient needs, so to look for this drug as a big money maker--Genzyme thinks it could be a $3 billion per year money maker for them--is highly unethical and raises moral issues as well. A doctor could use the cheaper campath to treat his patients and there is nothing illegal about that. And therein lies our skepticism about the pharmaceutical industry.
By the way, your work here is exceptional.