Monday, August 30, 2010

Summary of Soon to Be Released CCSVI Study

charchot's first illustration of multiple scle...

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Dr. Marian Simka, who, working out of Poland, has perhaps performed more CCSVI liberation procedures than any other interventional radiologist in the world, has released the following summary of a soon-to-be released research paper. Its findings are dramatic, and have already provoked much discussion on CCSVI sites around the web and on Facebook.

Dr. Simka's summary:

"CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS" Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

ABSTRACT: Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis.

Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis.

Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.

Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.

Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis. Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

The above summary is short, but packed with tantalizing nuggets of information. Of course, the first item that leaps off the page is the finding that 97.1% of MS patients have venous blockages. Needless to say, this is a very compelling number, and begs for a comparison with the commonality of such blockages in healthy subjects. Unfortunately, to my knowledge no study using catheter venography on healthy patients has yet been done, so this data is simply not available. We can assume that the incidence of venous abnormalities in the general population would be much less than 97.1%, however, venous anatomy has been so little studied that I don't think such a statement can be made with complete confidence. Hopefully, the full paper will expound on this subject.

It's also interesting that Dr. Simka concludes that CCSVI venous abnormalities are probably congenital, but slowly progress. This conclusion would seem to be supported by his a summary of results, which found that younger patients presented with milder lesions, and older patients with more severe ones. I'm not sure of the biological mechanism that would lead to congenital deformations slowly getting worse with age. I had assumed that malformations present at birth would remain relatively stable throughout a subject's lifetime, or at least stabilize once the subject reached maturity. Again, we can only wait for the full paper to be released to get the good doctor’s thinking about these findings.

The correlation between severity and the location of lesions with disease presentation is also fascinating. It will be quite enlightening to find out just which locations correlate with higher degrees of disability.

Perhaps the most tantalizing piece of info in the research summary is the declaration that CCSVI venous abnormalities are "not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease". One can only wonder at the evidence found that prompts this statement, which would suggest that CCSVI treatment alone may not put the much hoped for kabosh on the MS disease process. Then again, perhaps taking venous abnormalities out of the picture will halt the disease despite whatever other factors may be present.

I guess we'll just have to stay tuned for the release of the full paper for all of these questions to be answered. In all likelihood, though, as with practically all research related to MS and to CCSVI, the full paper will raise at least as many questions as it answers. Grrrrr...

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Friday, August 27, 2010

CCSVI: The Evolution of the Revolution

Detail of plate 4, figure 4 of Pathological An...

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It's now been about 16 months since the first Multiple Sclerosis patients outside of Italy underwent the venoplasty treatment known as The Liberation Procedure to address the then little heard of vascular condition termed "Chronic Cerebrospinal Venous Insufficiency", or CCSVI for short. Discovered earlier in the decade by the Italian vascular physician Dr. Paolo Zamboni, whose published papers reported success rates previously unheard of in the treatment of MS, knowledge of the condition and its potential relationship to MS was at that time scant, with few people in the MS community having ever heard of CCSVI. Those that were aware of the vascular hypothesis were confined, for the most part, to a small group of patients actively debating the relative merits and deficiencies of the hypothesis on one somewhat obscure MS Internet forum.

Well, what a difference 16 months make. The small trickle of patients undergoing treatment has now become, if not quite a flood, then at the very least an ever-increasing cascade, and word of CCSVI has spread like a kerosene fueled inferno throughout the MS population. Indeed, the very landscape of the Multiple Sclerosis world has shifted, as seismic waves of hope, promise, and controversy have swept over the horizon. In some cases, battle lines have been drawn, and in others, alliances formed. Fairly or not, in the eyes of many MS patients, mainstream neurology and the MS societies have become the enemy, mired in an outdated medical dogma and held in the sway of Big Pharma, and interventional radiologists following in Zamboni's footsteps have been hailed as conquering heroes.

Some of the first US doctors to start performing the Liberation Procedure were soon stopped by wary hospital administrators, but a handful of interventional radiologists in the United States are still openly doing the work, and a network of physicians operating "under the radar" has formed, their names being furtively passed from patient to patient via e-mail and social networking internet sites. Internationally, clinics offering the procedure are popping up from Costa Rica to Bulgaria, and the business of CCSVI medical tourism is booming. YouTube is bursting with videos of patients displaying their post-liberation gains, and web forums are abuzz with CCSVI chatter. Nonprofit CCSVI advocacy groups have formed, and patients, after years of being dictated to, are finally enjoying the self empowerment of having their say.

Put in its simplest terms, the CCSVI hypothesis states that blockages in the jugular and azygous veins, which drain the brain and spinal cord respectively, cause a long-term disruption in the flow of blood through the central nervous system, thus causing, over a period of many years, the damage to nervous system tissues that has come to be called Multiple Sclerosis. This relatively straightforward but radical notion flies in the face of accepted Multiple Sclerosis doctrine, which states that MS is an autoimmune disease caused by an immune system gone awry, and for reasons still unknown goes on a cannibalistic attack of a patient's own tissues. Though at first glance appearing to be at odds, in some ways the two theories actually complement each other, as CCSVI offers an explanation as to how and why immune system cells, which normally are stopped from infiltrating the central nervous system, can find their way through the blood brain barrier to wreak havoc on the nervous system beyond.

So, the CCSVI revolution rockets onward, an irreconcilable force destined to redefine, at a very basic level, medical science’s understanding of one of its greatest mysteries, the mechanism behind MS and maybe even some other autoimmune diseases, right?

Well, not so fast. Despite the boundless optimism expressed by many MS patients, there are still many very legitimate questions that need to be answered about the CCSVI hypothesis and the Liberation Procedure, questions impacting both near and long-term implications for the Multiple Sclerosis universe.

On a pathophysiological level, while CCSVI does seem to answer many of the perplexing questions surrounding MS, in some very important areas the hypothesis fails to reconcile with some firmly established facts about the disease. Among the most glaring examples of these are:

  • The geographic distribution of the disease, which shows that the prevalence of MS increases indisputably the further away one gets from the equator. Additionally, migrant studies show that when people move from an area where MS is common to an area where it is rarer they show a decrease in the rate of the disease, whereas migrants moving in the opposite direction tend to retain their resistance to the disease. There is also evidence that susceptibility to the disease might also be linked to the age at which migration occurs. (Click here)
  • The female to male ratios of people with MS, which appears to be growing farther apart. In 1940, the ratio of women to men with MS in the US was about 2 to 1. By 2000, that ratio had grown to nearly 4 to 1. (Click here)
  • The genetic factors that have been identified as being related to susceptibility to MS, though few, are all associated with genes that play a role in regulating the immune system. (Click here)
  • The association of MS with Epstein-Barr virus. Although over 90% of the population is infected with EBV, recent research has shown that people who don't have EBV do not get MS. (Click here)
  • According to CCSVI theory, which states that blood refluxing back into the CNS causes the inflammation that is a hallmark of MS, it would seem that the amount of inflammation would continue to increase with the age of the patient. Instead, the inflammation seen in MS typically reaches its apex in the early relapsing remitting stage of the disease, but falls off dramatically when the disease enters the later, progressive stage. Patients who start out with progressive disease (PPMS), though generally older at the time of diagnosis, typically show very little evidence of CNS inflammation. (Click here)

Although it is difficult to understand the above factors in terms of CCSVI, they do not invalidate the theory. MS is an extremely heterogeneous disease, suggesting that multiple factors are likely at work, and that these factors very likely change from individual to individual. In fact, what we call MS may not be one disease, but rather a collection of diseases that share some common elements. A research effort called The Lesion Project (click here, page down to "Heterogeneity of the disease") has identified four distinct lesion types through the postmortem examination of MS nervous system tissues. The project has further found that each patient only exhibits one type of lesion, and that some of the lesion types surround blood vessels while others do not.. This evidence suggests that different disease processes may be at work, and it could very well be that CCSVI plays a major role in some forms of what we call MS, but a lesser role, or no role at all, in others.

This also helps explain the variance in the effectiveness of the liberation treatment from patient to patient. Some patients see dramatic improvements in their condition, sometimes almost immediately after having their veins unblocked. Other patients exhibit no benefit from the procedure, and some even get worse. Dr. Gary Siskin, an interventional radiologist doing the Liberation Procedure in Albany, New York, has publicly stated that one third of his patients see dramatic improvements, one third minor improvements, and a final third no improvements at all.

Dr. Siskin also stresses the importance of doctors managing patient expectations, as the vast majority of materials on the internet (YouTube videos, patient testimonials, etc.) paint an overly positive picture of the results of liberation. This isn't due to any kind of deception on the part of MS forum members or YouTube posters, but is simply a function of human nature. Patients who exhibit dramatic improvements are far more likely to publicize the outcome of their procedures than those who experience disappointing results. It's very important that patients go into venoplasty with reasonable expectations.

The tools and methodology for both the detection and treatment of CCSVI have so far demonstrated sometimes serious deficiencies. On the detection side of things, the most common noninvasive imaging techniques, MRV and Doppler sonogram, have both proven to be less than reliable in identifying the venous defects associated with CCSVI, returning both false-positives and false negatives. Doctors and patients alike have noted that their preprocedure imaging very often does not match up with what is actually found during the catheter venogram procedure, which is the gold standard for imaging venous abnormalities.

The handful of imaging studies done have produced widely varying results, some detecting nearly universal evidence of CCSVI in MS patients, and others finding scant evidence of CCSVI at all. While some of these discrepancies can be attributed to variances in methodology and operator competence, I believe the overall reason for these vastly different findings falls on the failings of technology. So far, the only reasonably reliable noninvasive imaging method appears to be Doppler sonography done according to very specific protocols designed by Dr. Zamboni, but even the results of testing done to these exacting standards at times proves to be unreliable, and, according to the doctor who performed my recent sonogram using the Zamboni protocols, are still somewhat subjective. The physical abnormalities being attributed to CCSVI are hardly subtle, and one would think, given the advanced state of medical technologies, that a variety of instruments and methodologies would be able to pick them up. Apparently, this is not the case, and it is imperative that better imaging techniques be developed, as it is simply not feasible to perform invasive catheter venograms on every patient suspected of having CCSVI.

At a recent CCSVI symposium attended by many of the interventional radiologists most experienced with the Liberation Procedure (click here for report), it was apparent that the Liberation Procedure itself is still in its early infancy and is a very much a work in progress. Many of the presenting radiologists commented on the steep learning curve involved with doing the procedure, and the opinions of these very accomplished physicians varied widely on subjects as fundamental as the proper size of balloons to be used during venoplasty, whether or not stents should be used to prop open blocked veins, and even what constitutes a treatable stenosis. Dr. Sclafani, who performed my attempted liberation (blockages were found but were unable to be addressed, click here for more info) has in no uncertain terms called this an age of discovery. If CCSVI is indeed shown to be a causative factor in Multiple Sclerosis, it's very likely that veins other than the jugular and azygos (such as the lumbar and vertebral veins) play a role in the disease, and presently there is no way to address blockages in these vessels. It's very important that patients be cognizant of these factors when making the decision whether or not to undergo liberation.

Many patients who opt for venoplasty alone (without the use of stents) experience restenosis of their treated veins, necessitating a repeat procedure. If the initial procedure was done locally, and was covered by insurance, this might not pose much of a problem. On the other hand, if the patient traveled thousands of miles, and spent the $10,000-$20,000 often required for travel and treatment, such a repeat performance may prove to be impossible, turning their initial procedure into a financial disaster.

Patients who have stents implanted in their blocked jugular or azygos veins are entering the realm of the unknown, as all of the stents currently in use were designed to be implanted in arteries, which anatomically are extremely different from veins. The only other patient population that regularly has stents implanted in their veins are end-stage hemodialysis patients, who suffer from extremely serious kidney disease. Studies done on the failure rates of these stents are not encouraging, often finding a 50% failure rate after one year (click here for an extensive study, or here for a chart summarizing its results ). I'm certain that the stresses placed on stents during the dialysis process are much different than those placed on stents implanted in CCSVI patients, so the validity of the comparison may questionable. Still, all of the currently available stents were designed primarily for use within the chest cavity, where they are not subject to the constant bending, twisting, and torque that they experience when implanted in the extremely flexible human neck. For patients determined to improve their hemodynamic blood flow and stand a better chance at avoiding restenosis, or whose veins simply don't respond to repeated attempts at ballooning, stents do offer a viable alternative to balloon venoplasty. Clearly, if CCSVI does prove to be an important piece of the MS puzzle (and I believe it will), stents specifically designed for use in the jugulars will be sorely needed.

In conclusion, it has certainly been an interesting 16 months. While much has been learned in regards to CCSVI, there is much more that has yet to be learned. Although some questions have been answered, many more have been raised. A robust treatment trial of the Liberation Procedure that includes sham procedures would be the quickest and most effective way to answer most of these questions. Researchers at the University at Buffalo are currently conducting such a trial, albeit a small one, limited to 30 subjects . Unfortunately, as of today, no other such trials have yet been funded.

CCSVI offers MS patients tangible hope, a commodity in perilously short supply before news of the hypothesis made its way through the Multiple Sclerosis community. Quite literally sick of, and from, taking the drugs that many MSers know are doing nothing to address the underlying cause of their disease, CCSVI has been embraced by patients with a fervor rarely seen in modern medicine. In some cases, I fear that the strength of these convictions has at times overwhelmed reason. I fully understand the desperation felt by those afflicted with this damned disease, as I am subject to it myself. Still, it should be at the forefront of every patient's mind that while the past year has been very encouraging, CCSVI and its role in MS has by no means been proven.

I personally made the choice to attempt liberation because of the severity and aggressiveness of my disease. Each patient must assess their own risk/reward ratio, keeping in mind that many of the questions surrounding CCSVI will likely be answered sooner rather than later, and the techniques used to address blocked veins will mature at a rapid pace, as physicians gain experience and work their way up the learning curve. Quite likely, Liberation Procedures done 12 months from now will be significantly different from those done today, and patients who can afford to wait before embarking on liberation will surely benefit from the accrual of knowledge and the perfection of technique that can only come with time.

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Saturday, August 21, 2010

Bits and Pieces: Little Bit of Everything Edition

NYC - MoMA: Andy Warhol's Campbell's Soup Cans

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There's a Chinese restaurant around the corner from my apartment building that makes incredibly quick deliveries. Sometimes it seems like the delivery guy is knocking on the door of my apartment before I even put the phone down. I really don't know how they do it. Anyway, the menu features an item called "Little Bit of Everything Soup", and that's just what it is, a delicious medley of a little bit of everything. The soup is a meal in itself, sometimes even two meals, since the portions delivered can best be measured in gallons.

That's kind of what this post will be. I don't know that there's any real connection between any of the items here, other than they all piqued my interest in one way or another, and most at least have something peripherally to do with MS or mobility issues. So, submitted for your approval/attention/enjoyment, I present to you the following tidbits…

  • Since CCSVI seems to be at the top of the list of everyone and everything involved with MS these days, I'll start off with a couple of "vascular theory" items.

    Demonizing socialized medicine is a favorite pastime of much of the US population, but as our Canadian friends are showing us, there's something to be said for a medical system that doesn't rely almost entirely on pharmaceutical companies to fund medical research. Although the Canadian national government hasn't yet acted in regards to CCSVI (although there has been plenty of debate about it in Parliament) the country's individual provinces are starting to step up to fill in the void. Saskatchewan started the ball rolling, with the province’s Premier, Brad Wall, announcing that Saskatchewan will start funding clinical trials of the Liberation Treatment regardless of the inaction of the national government (click here). Several other provinces, including Québec (click here) and Nova Scotia (click here), have joined Saskatchewan's call to action. Kudos to the Canucks, as treatment trials of the Liberation Procedure, which will be the quickest and most direct way to prove or disprove the CCSVI hypothesis, are desperately needed. Kudos also to my younger brother, who now lives in Montréal, is the Dad of an adorable French-speaking toddler, and recently became a Canadian citizen. The accomplishments of my little bro may have nothing at all to do with MS, but, hey, it's my blog and I'll kudo who I want to…

    One of the growing problems with the CCSVI wildfire that is raging through the MS Internet world is that folks new to the idea are getting an unrealistic picture of the success rate of the Liberation Procedure. If a patient were to get their knowledge strictly from YouTube videos and the various CCSVI related forums, they could easily get the impression that the procedure almost always results in dramatic improvements in those who undergo it. The reality is not quite as rosy, though, as some patients see little or no improvement after being treated by a Liberationista (I think I just invented that term, and I kind of like it). Dr. Siskin, the Liberationista working in Albany, recently stated publicly that one third of his patients experience only minor improvement, and another third no improvements at all.

    Having said that, I can't resist sharing the wonderful post-liberation experience of an MS patient name Nicole, who is a fellow member of the Patient Advisory Board of the CCSVI Alliance (click here). She first underwent venoplasty on her blocked veins at the beginning of March and saw some immediate improvements, but her veins then restenosed and her improvements receded. Nicole underwent a second procedure less than month ago, and has again experienced some very positive results, this time validated by her neurologist. She's written a great account of her triumphant neuro visit on her blog (click here). I'll have more to say regarding CCSVI in my next post, which will be entirely devoted to the subject.

  • A fascinating article published in the New York Times this week (click here) details how a normally dormant gene in human DNA can somehow become "reanimated" and cause a form of Muscular Dystrophy. Scientists have learned that up to 95% of the genes that makes up the human genome are junk, remnants from the ancient past that have remained part of the structure of human DNA but serve absolutely no purpose in the development and functioning of modern human beings. Researchers were surprised to discover that some of this genetic junk can become reactivated, and in this case cause a rare variant of Muscular Dystrophy.

    What really grabbed my attention about this article is that several years ago researchers at Tufts University suggested that a similar mechanism may play some part in the MS disease process (click here). Many of the dormant genes in human DNA are left over bits of ancient retroviruses, which at one point were infectious, but over the course of hundreds of thousands of years of evolution have simply been harmlessly incorporated into the structure of the human genome. Scientists at Tufts suggested that the presence of long term "smoldering" infections, such as Epstein-Barr virus or HHV-6, might somehow activate these normally dormant viral remnants, thus leading the immune system to attack the body's own cells, and cause what has been come to be called the autoimmune reaction. The idea makes much sense, and at least offers some explanation of autoimmunity. I'm always incredibly frustrated when doctors simply label a disease like MS "autoimmune" and leave it at that, without attempting to explain why on earth the immune system would simply decide one day to become cannibalistic and start attacking the body's own cells. CCSVI offers one explanation of the apparently aberrant immune response seen in MS, and this reactivated gene theory offers another. They could very well both be right, as MS is so heterogeneous that a variety of different mechanisms may be at work in the different forms and presentations of the disease.

  • The Beautiful Brain is one of the most interesting websites I've come across in quite some time (click here). Exploring the intersection of neuroscience and art, the site features essays, interviews, and galleries that delve into the how’s and why's of the biological impulses that lead to creative expression. It's filled with stimulating information about the essence of creativity, and the natural inclinations that lead human beings to feel the need to make music, paint, dance, and embark on all of the other artistic endeavors that so enrich our lives. It's also features lots of eye candy, amongst which is a gallery of intriguing artwork created by WK reader Elizabeth Jameson, who uses her own MRI images as the basis for creating striking visualizations (click here). Definitely worth checking out, but be forewarned, you may very well lose several hours getting sucked into the world of The Beautiful Brain.
  • Moving from the sublime to the ridiculous, here's a page that highlights some of the most asinine wheelchair ramps ever constructed (click here). Whereas The Beautiful Brain leads one to marvel at the mystery and majesty of human intellect, this site reminds us that the stuff that resides between many people’s ears is no cause for celebration. Wheelchair ramps built at impossibly steep angles, that don't reach all the way to the top of the stairways they are meant to circumvent, that end in mid air? Yup, here they are, in all of their idiotic splendor. I have personally almost killed myself trying to navigate my chair up the nearly vertical incline that one New York City restaurant thoughtfully provides for its disabled customers, so the examples illustrated on this page should really come as no surprise. Still, though, I paused, stared, and wondered at the sheer stupidity behind the planning and execution of some of these comically absurd monstrosities. Attempting to actually use them would give new meaning to the words Wheelchair Kamikaze. Wow.
  • Though you might not agree with everything he writes about or stands for, journalist Christopher Hitchens is inarguably an immensely talented scribe, and holds a high place among those storied and playfully wicked spirits known as gonzo journalists. Recently diagnosed with esophageal cancer, Mr. Hitchens wrote this exceptional piece for Vanity Fair (click here), in which he comments on his sudden abduction into the world of the ill, the very real likelihood of his own demise, and the seeming randomness of it all. A must read for everybody, whatever their state of health.
  • I added a little doohickey to the left column of this page that allows readers to enter their e-mail addresses so that notifications of new posts will be sent directly to their inboxes. Wouldn't want anyone to miss a second of the exciting goings on here at Wheelchair Kamikaze. Yawn.

Well, that's all there is. And, as Peggy Lee sang so many years ago, in a sentiment that I think Christpher Hitchens would appreciate, if that's all there is, let's break out the booze and have a ball. If that's all there is…

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Sunday, August 15, 2010

Some Unsolicited Advice for the National Multiple Sclerosis Society

1200351706681[1] The fall issue of the National Multiple Sclerosis Society's magazine Momentum includes an article entitled "Safe Travels through the Internet", in which I'm quoted quite extensively (click here for article). I'm very thankful to be included in the article, along with fellow bloggers Lisa Emrich (click here) and Trevis Gleason (click here), and was quite surprised when I was approached and asked to be interviewed. I think the writer did a terrific job on the piece, which is extremely informative and should be very helpful, especially for those just getting introduced to the online MS universe. The entire magazine is a quite good, and is definitely recommended reading.

After Momentum came out last week, I received several e-mails expressing surprise that I would participate in a magazine put out by the NMSS, the inference being that since I'm a proponent of CCSVI, and have written extensively about my largely unenthusiastic views of Big Pharma and their MS products, that I should shun any association with a group that many perceive as the enemy, and one which numerous patients view as simply a shill for mainstream MS interests and the big pharmaceutical companies.

It struck me that this is a huge problem for the NMSS, and for the MS population. The fact that a significant percentage of MS patients view the largest and most visible nonprofit MS advocacy group as an adversary is a disconnect that both those struggling with the disease and the organization that is supposed to be dedicated to fighting the malady can ill afford.

The NMSS (and their sister Canadian organization) have long been targets for many in the MS online community. That enmity has reached new heights in the last six months, however, after the organizations' admittedly slow, clumsy, and misguided initial handling of the CCSVI issue. Even after the Canadian and US MS societies dedicated $2.4 million to CCSVI research, dissatisfaction with the organizations grew, largely because the research that was funded is more academic than practical, as no treatment studies received vital financial grants. This brought online gripes against the societies to new levels, with accusations flying that the studies funded were at best simply delaying tactics, and at worst intentionally designed to disprove the CCSVI hypothesis for the benefit of the MS societies’ Big Pharma masters.

Of course, the NMSS does much more than fund MS research. The society runs a host of valuable programs that benefit the MS community on both the local and national level, among them support groups for both patients and caregivers, government advocacy, MS education, financial assistance, scholarships for those living with MS or their children, employment resources, and help with procuring assistive devices. As for the research the society does support, a quick perusal of the NMSS website reveals that the society funds many innovative and cutting-edge projects (click here), most of which would otherwise get no funding at all.

Still, a large portion of the MS population regards the society as a monolithic entity, an instrument only interested in maintaining the MS status quo, enriching the society itself, and pushing the use of the hugely profitable immunosuppressive and immunomodulating drugs currently offered by the big pharmaceutical companies.

Since I started this blog 18 months ago, I've gotten to know several employees of the National Multiple Sclerosis Society. It may surprise some readers that these folks are not firebreathing ogres with glowing eyes, forked tongues, and pointy tails, but compassionate human beings who fervently care about ridding the world of Multiple Sclerosis and helping patients stricken with the disease.

With all of the above in mind, I thought I'd offer a few suggestions to the NMSS in an effort to help build a bridge between the organization and those who find it highly suspect.

My first suggestion is a radical one, but one that I think would almost instantly restore credibility to the NMSS as an organization wholly devoted to finding a cure for Multiple Sclerosis. The society should simply stop taking any funding from the pharmaceutical companies that market MS drugs. I've been told that donations from pharmaceutical companies represent less than 5% of the financial support received by the NMSS, and if this is true, rejecting this funding shouldn't be a crippling blow to the society's bottom line.

Additionally, I believe that if this audacious step was taken, much of the revenues lost would be made up by an increase in donations by patients and their loved ones who currently hold the society in complete disregard. Online, patients regularly talk about asking everyone they know not to make donations on their behalf to the National Multiple Sclerosis Society. By making the bold move of rejecting pharmaceutical money, the society would quickly win back many of the patients who are, under current circumstances, now lost to it forever.

Thumbing through the most recent edition of Momentum, the quarterly NMSS magazine, I counted 13 pages of advertisements paid for by the pharmaceutical companies, in a magazine comprised of a total of 70 pages. In fact, Pharma ads were practically the only advertisements in the magazine (there were also a few from medical device manufacturers). Given these numbers, and the fact that for many individuals Momentum is their major point of contact with the NMSS, it isn't difficult to see how the magazine's readers might get the impression that the NMSS takes its marching orders from Big Pharma.

I'm sure that the higher-ups at the NMSS can't be blind to the fact that taking money from companies that make billions annually marketing obscenely expensive drugs that ameliorate MS symptoms but do nothing to address the still unknown cause of the disease appears to be a conflict of interest for an organization whose stated vision is "A World Free of MS". Such a world would send many of the companies that market MS drugs quickly into bankruptcy court. Multiple Sclerosis has become the goose that laid the golden egg for these corporations, entities whose mandate it is to constantly drive profit, and that by law are beholden to their stockholders, not to the patients who consume their products.

My second suggestion would be to let us see some of the real-life human beings that staff the organization's national and local offices. Those that I've had contact with are empathetic, caring human beings, and many of them have had their lives impacted significantly by friends and family who suffer from MS. The society desperately needs to shed its monolithic image, to show the MS community in a very real way that it is not made up of faceless automatons, but by concerned people who, as one told me, would gladly give up their jobs if a cure for MS could be found.

The NMSS needs to humanize itself, and a strong dose of the personal touch is needed. A starting point might be to feature the profiles of select society employees on the NMSS website and in Momentum Magazine. Much more good would be served by devoting a few pages of the magazine to profiling real life, sympathetic NMSS employees than to advertisements for Avonex, Rebif, or Copaxone.

Lastly, I would ask the NMSS to play nicely with the other much smaller MS nonprofit organizations that dot the MS landscape. I understand that the competition for funding is fierce, especially given our current economic climate. But the NMSS has developed a somewhat cutthroat reputation among the nonprofits that compete with it, all of whom share the goal of ridding the world of MS. The NMSS is the de facto face of Multiple Sclerosis to the public at large; it's the only MS organization most of the population has ever heard of. Certainly there is room for smaller, more specialized organizations to have a place at the funding trough. This isn't a zero-sum game. As a matter of fact, it's not a game at all. People's lives are at stake, and by working with smaller organizations, rather than against them, a cure for this beast called MS will surely come about sooner. As was said during the civil rights movement, keep your eyes on the prize.

I hope these suggestions are taken in the spirit in which they are given. The lack of faith in the NMSS by the very population it advocates for is reaching the crisis stage in some corners. Direct action is needed, and despite the misgivings and suspicions held by some MSers about the National Multiple Sclerosis Society, the society can be at the forefront of affecting real change, by heartily rejecting the status qou and showing the community an energetic new face. The NMSS must redefine itself to the MS community, to the mutual benefit of both…

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Sunday, August 8, 2010

Your Own Private Hiroshima

Atomic bombing of Nagasaki on August 9, 1945.
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Sixty-five years ago this weekend, atomic bombs were dropped on the Japanese cities of Hiroshima and Nagasaki. At 8:16 AM on August 6, 1945, a bomb nicknamed "Little Boy" exploded over Hiroshima, leading to the eventual death of 120,000 human beings. Three days later, a bomb called "Fat Man" wreaked similar havoc upon Nagasaki. Though the destructive effects of the atomic bombs were limited to the confines of those two cities, they ushered mankind into a frightening new age, and for the residents of planet Earth, things would never be the same again.

Those of us who have received a diagnosis of Multiple Sclerosis, or any other potentially devastating illness, have suffered through our own very personal versions of Hiroshima. Not to minimize the horrific effects of the atom bomb, which literally vaporized tens of thousands of human beings and created never before imagined levels of destruction on the ground, being given a serious diagnosis has an A-bomb effect on the life and emotions the patient hearing the news. There is the blast-like shock of the sudden confirmation that something has gone terribly wrong with your body, the firestorm of searing fear about what an abruptly uncertain future might hold, and the unknown implications of the long-term effects of the illness, much like the silent but lethal radiation that plagued the survivors of the initial atomic attacks.

Similar to the residents of Hiroshima, who lived in a city that had somehow been spared the horrors of a war that had thus far kept its distance but of which they were nevertheless acutely aware (the city had been left untouched by the Allies so that a pristine target would be available for the first A-bomb), many MS patients suspect that their bodies are betraying them long before being given an actual diagnosis. Most MS patients, myself included, experience strange physical symptoms for years before the disease finally outs itself enough to be picked up by medical diagnostics.

At 8:15 AM on that long-ago sunny August morning, the citizens of Hiroshima were well into their daily routine, leaving for work, preparing for school, finishing breakfast, embarking on another day. The war had ravaged nearby cities, and had caused them privation and worry, but had no tangible physical effects on their own city. Sixty seconds later, Hiroshima was a smoldering ruin. In the days and weeks and years before their eventual diagnosis, MS patients too go about their daily business, nurturing relationships, starting families, building careers, taking their futures almost for granted, secure in the illusion of the stability of life. Once the verdict of MS has been returned, though, that illusion is blasted to pieces, the tenuous underpinnings of life suddenly revealed by the explosive light of illness.

In the months and years that follow, the destruction wrought by the disease differs from patient to patient. Some fortunate folks can go years, and even decades, with their disease largely undercover, perhaps only rarely punctuated by periods of acute illness. Others are not so lucky, their malady an aggressive and hungry beast, quickly devouring physical and mental abilities, and with them relationships and careers, hopes and dreams and expectations of what was supposed to be.

Like the surviving victims of the atom bomb, a transformation occurs among those given a bitter diagnosis, not only to mental and physical capacities, but to the very perception of reality itself. The past is severed from the present, a museum piece to be looked back on sometimes fondly, sometimes with regret, but always as an object that stands alone, as if from another life. The future, well, the future is a fragile thing, a delicate vessel of spun glass, filled with a dash of hope and an abundance of fear, so easily broken that one often averts their eyes for fear that too long a gaze might shatter it.

Best to concentrate on today, and like the survivors of a smashed city, do the very best that can be done with what remains, and not linger over all that has been lost. With everything that it takes away, the diagnosis of a serious illness bestows upon those given it the certainty of the incredible preciousness of time, the knowledge that this finite gift, which grows ever scarcer with each passing second, should not be wasted but savored, despite whatever hardships must be overcome.

"Seize the day" may be a tired platitude, but for those with progressive illness, the day should indeed be embraced, and the time held within used with purpose, thought, and even joy. Depending on one's changing mental and physical condition, the day may best be spent at work, play, or rest, but should be mindfully and willfully devoted to its greatest use. A glance back at the past will undoubtedly reveal much wasted time, and that fact should inform a present in which every effort is made to eliminate such waste. We will never again have today, and imbued with the knowledge of the dearness of time, we must try our best to enjoy each new dawn for what it most definitely is, a celestial bequest soon to be withdrawn and replaced by tomorrow.

As patients, we can draw hope and inspiration from the ultimate fates of Hiroshima and Nagasaki, as each city has risen anew, its citizens rebuilding streets, structures, and lives. Today, both cities are bustling metropolises, and the two nations whose struggle to the death resulted in the cities’ absolute destruction are now the best of allies, the once bitter enemies now friends and partners in a world so different from the days of their enmity.

MS patients, too, are watching a quickly transforming landscape, one finally showing glimmers of hope in the form of  stem cell therapies along with promising new research in neuroregenerative and neuroprotective compounds and strategies. Finally, the clouds appear to be parting, and even if some of the roads now being researched turn out to be less fruitful than anticipated, the very act of traveling down them will open up new vistas for investigation, new avenues for discoveries perhaps not yet dreamed of but with profound implications.

We've entered an age of patient advocacy unlike any that has been seen before, and those to whom fate has in the past been dictated now have a voice to shout back with, and an understanding that the status quo is simply unacceptable. Without hysterics, but in a steady and rising crescendo, we must insist that new ideas be taken seriously, and demand that the vested interests of those who have profited from our collective misery not hold sway any longer. A revolution is slowly building, and with the help of dedicated physicians and researchers, we can and must become the driving force behind new ideas and new efforts that will transform the smoldering wreckage of what was into a gleaming future filled with hope and renewal. As Hiroshima and Nagasaki stand tall today, so to, both figuratively and literally, will the MS patients of today and tomorrow.
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Wednesday, August 4, 2010

Bits and Pieces-Back in the Saddle Edition

A big thank you goes out to all who have sent well wishes to me since I got sick a couple of weeks ago. Happy to report that I'm on the mend, and feeling a bit better every day. So, I'm climbing back onto the "Bits and Pieces" saddle, with another post featuring various items of interest that have piqued my curiosity, amused me, or left me infuriated. I hope they get a rise out of you, too...

  • A recent Newsweek article (click here) explores the reasons why, despite billions of dollars being spent on medical research, very few new drugs actually come to market, and why the ones that do don't cure anything. In a nutshell, the article outlines the Byzantine process into which our medical research model has evolved, and the many ways that process has become completely dysfunctional. We throw plenty of money at basic research, such as the discovery of new proteins, compounds, and molecules that show promise for the treatment of disease, but the gap between these basic discoveries and their development into real-world applications has become a growing chasm, so much so that it's been named the "Valley of Death" by the medical research community.

    Among the diseases mentioned in the article, for which basic research has yielded promising leads that have seen no follow-up, are metastatic cancers, genetic illnesses, Huntington's disease, and osteoporosis. A molecule has even been discovered shows promise in increasing blood flow through impaired blood vessels (ring any CCSVI bells for anyone?), but all of these discoveries have been left to wither on the vine, for a variety of reasons. It seems that researchers are drawn to the sexy arena of making new discoveries, but not to the more mundane work of shepherding those discoveries through the various testing phases needed to turn them into workable drugs. Funding goes primarily to initial academic research, with precious few resources available to take the discoveries made by that research to fruition. Licensing and patenting hurdles abound, keeping many discoveries from becoming financially viable enough to arouse the interest of the pharmaceutical companies, whose cash is desperately needed to take a newly found compound or molecule across the "Valley of Death".

    There are some organizations dedicated to addressing these problems, such as the Myelin Repair Foundation (click here) and Where Are the Cures? (click here), but the problem is so widespread and endemic that it will take a major overhaul in the most basic ways we conduct medical research to turn the situation around. It's time for a revolution, but as I wrote in my piece about the Medical Industrial Complex (click here), the targets seem to be everywhere and nowhere. Here's a video produced by Where Are the Cures? that nicely sums up this massive and enraging problem ...

  • There's a fascinating theory as to why so-called autoimmune diseases such as MS, lupus, and Crohn's disease are on the rise, called the "Hygiene Hypothesis" (click here). This hypothesis states that the super hygienic ways of first world countries has eradicated the parasites that were mankind's constant companion throughout evolution, and that this lack of parasites is the cause of many of the diseases that seem to have their roots in an immune system gone haywire.

    According to this disease model, the human immune system evolved in the presence of various parasitic organisms, and these organisms produced substances that modulated the immune system to protect themselves from attack. Since most of the citizens of developed nations grow up parasite free, they also grow up without the immunomodulating substances that these parasites secrete, thereby giving their immune systems free reign to attack the body's own cells. Though at first glance this hypothesis may seem far-fetched, the geographic distribution of autoimmune diseases seems to bear it out; less developed countries, where parasites are still rampant in the human population, exhibit far less autoimmune disease than do more developed nations with their much higher standards of personal hygiene and public sanitation.

    The answer to this dilemma? Well, to put it bluntly, the reintroduction of parasites into human beings, namely intestinal nasties such as hookworms (part of a family of intestinal parasites called helminths). As is illustrated by a recent article in the UK's Guardian newspaper (click here), researchers have been infecting autoimmune disease sufferers (and, in some cases, themselves) with hookworms in an attempt to alleviate their illnesses, often to surprisingly good effect (click here).

    So, anybody up for a nice parasite cocktail? Hell, if it would stop the progression of my disease, I'd bathe in the stuff. As an MS friend of mine once said, I'd climb up the ass of a fat man if I thought it would help my MS...

  • In my last post about my sudden fever and resultant hospital stay, I mentioned that my normal body temperature since I was diagnosed with MS is much lower than it was before the disease reared its ugly head. Last night, I took my temperature, and found it to be 96.5°. Many readers have commented that they, too, have normal body temperatures much lower than the traditional 98.6°. Over the years, this subject has come up numerous times on various Internet MS forums, and the general consensus always seems to be that the vast majority of MS patients do have body temperatures well below normal. Yet I've never come across a single scrap of research investigating why this might be, and when I've asked various MS physicians about it, they've had no suitable answer to the question. It seems to me that this phenomenon might be quite significant, and at the very least deserves some attention from MS researchers. Certainly, there might be a connection between low body temperatures and heat sensitivity, and investigations into this subject would be time much better spent than yet more research aimed at finding new and more expensive ways to suppress our immune systems. The fact that the majority of MS patients have low body temperatures seems like something that should have raised the curiosity of MS docs a long time ago. Just another one of those MS things that make you go hmmmm.
  • Since I've touched upon the maddening lack of any disease cures during the last 50 years, I thought I'd leave you with this classic bit of comedic truth, provided by the brilliant Chris Rock...