Bits and Pieces: CCSVI, Stem Cells, Big Pharma, Boobs, and A Sad Goodbye

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( For those readers who receive Wheelchair Kamikaze via email, this post contains videos, which can only be viewed on the WK website.)

As you may have noticed, I've changed the look of Wheelchair Kamikaze, more out of necessity than preference. Google's Blogger service, which hosts this blog, has been introducing new blog templates over the last year or so. Along with these new templates, some new functionalities have been added, many of which don't work with the templates originally provided by the Blogger. One of these new functionalities provides an easy way to reply to individual comments left by blog readers, which I thought would be an elegant and useful tool to utilize. Unfortunately, this new function doesn't work with the old blog template that I had been using, so, after holding out for several months, I've finally switched to one of Blogger's new designs. Not so sure that I am all that thrilled with its look and feel, so I'll probably be doing some tinkering over the next several weeks. Feel free to leave your input and or suggestions on the new design in the comments section of this post if you're so inclined.

As for this edition of Bits and Pieces, I've collected some interesting links related to CCSVI, stem cell research, and a very important new law that will finally rip away the veil of secrecy that now shields the financial monkeyshines that go on between pharmaceutical companies and the physicians that they constantly court to get them to prescribe their products.

Included in the mix is a video of Suzanne Somers talking about her boobs, so let me never be accused of not providing culturally redeeming materials…

♦ On the CCSVI front, The International Symposium on Endovascular Therapy was held this past week in Miami, Florida (click here). The symposium featured several presentations on CCSVI, including data from what I believe is the first large-scale study looking at CCSVI treatment outcomes since Dr. Zamboni first published his initial findings. This study (click here), conducted in Sicily, tracked 170 patients who underwent CCSVI angioplasty. Patients were assessed by physicians prior to treatment using the standard scale to measure MS disability (EDSS), and were asked to assess their own quality of life using a 16 item questionnaire. At the three-month point post treatment, it was found that median EDSS scores fell from 4.5 to 4.0, with patients who suffered from less disability benefiting more than patients with more severe disability. Quality of life scores followed a similar pattern, indicating that patients relatively less impacted by the disease reported greater improvements than those experiencing a more advanced disease state. Since the symptoms most often cited as being improved by CCSVI treatment are fatigue, cognitive functioning, and heat intolerance, these findings do make some sense. Patients with less advanced disease (as defined by mobility issues) often find these symptoms to be their most debilitating, whereas more severely disabled patients might not find the relief of the symptoms quite so impactful. The authors of the study note that a longer observation time and a control group are needed to confirm these findings.

♦ An interesting theory out of Australia links chlamydia pneumonia infection with CCSVI (click here). According to this theory, the venous defects and anomalies found in the veins of MS patients might not be congenital (developed in the womb), but instead may be caused by chronic inflammation due to infection with the chlamydia pneumonia bacteria. According to this hypothesis, when inflammation within the vein walls subsides, it may leave behind the webs, septums, and valvular abnormalities now being found by doctors performing CCSVI angioplasty. There has long been a small but adamant group of researchers (led by a research team at Vanderbilt University) and patients who believe that MS is caused by chlamydia pneumonia, and some of these patients have successfully treated their disease using a long-term course of combination antibiotic therapy. More info on the link between MS and CPN can be found that CPNhelp.org (click here).

The proposed link between CPN and CCSVI certainly opens the door to new areas of investigation, and highlights just how much there is left to be learned about CCSVI and its relation to multiple sclerosis. What initially seemed to be a relatively simple hypothesis with a fairly straightforward minimally invasive surgical solution is now slowly being understood to be more complex than we had originally anticipated. The treatment protocol used to alleviate CCSVI is still a work in progress, with the techniques used varying greatly from physician to physician, and the results experienced by patients who undergo the procedure varying widely as well. Unfortunately, very little scientifically valid tracking of patient results has thus far been done, so most of our evidence remains anecdotal. The discovery of the vascular abnormalities associated with MS, now called CCSVI, is, I think, an extremely important one, but it's becoming increasingly clear that CCSVI is a part of a bigger MS puzzle, one that includes not only vascular issues but also genetic predisposition, infectious exposures, and environmental factors as well.

♦ The coming 6-12 months should bring important research data from ongoing CCSVI studies, information that very well could raise as many questions as it answers, as is so often the case with scientific investigation. The upcoming second annual International Society for Neurovascular Disease (ISNVD) meetings will be held in Orlando, Florida from February 18-22nd, and should bring with it a veritable smorgasbord of CCSVI findings (click here). For those readers in the Central Florida area, a patient information program is being held on February 18 at the Orlando Hilton, and registration is now open for the event (click here). Please note, for those not in the Florida area, registration for a live webcast is also available, at the link previously provided.

♦ Here's a chance for you to get involved in CCSVI activism. Activist Karen Golden Oronte has started a letter writing campaign to members of the US Congressional MS Caucus. A list of Congress members to write to, as well as tips on what points to make in your letter, can be found on the always informative CCSVI in MS Facebook page (click here). Compared to coverage in other countries, CCSVI has received very little attention here in the US (strangely so, actually), and this letter writing campaign is a great idea for raising awareness of the issue amongst our elected representatives. So write a letter and use the tools of democracy to make our voices heard. Power to the people, right on!

♦ It seems there has recently been a palpable uptick in the number and pace of advancements being made in the field of stem cell research. One early stage study was recently completed on patients suffering from SPMS, using autologous (taken from the patients themselves) mesenchymal stem cells infused into the patient intravenously (click here). Although the study was small (10 patients) and primarily aimed at assessing the safety of this kind of stem cell treatment, it also assessed the impact of the treatment on some of the visual deficits experienced by the patients involved. After 10 months researchers were able to document several physiological improvements in the treated patients.

♦ An interesting study done on mice demonstrated that exposing older mice with MS like nervous system damage to blood taken from younger mice activated stem cells resident in the central nervous systems of the older mice, resulting in nervous system repair (click here). Although this research is in its earliest stages, this may point the way to therapies that allow the stem cells that are resident in all patients to someday be stimulated to regenerate nervous system damage done by diseases like MS. In early MS, stem cells that are already a part of the nervous system can effectively repair damage done to myelin, but this ability decreases with age and time afflicted with the disease. In this study, exposure to youthful blood increased myelin regeneration in older subjects.

♦ Another group of researchers were for the first time able to convert umbilical cord stem cells into oligodendrocytes, the central nervous system cells that produce myelin (click here). This is a very important advance, as stem cells specifically targeted at central nervous system damage would, in theory, be more effective at repairing this damage than generic stem cells when transplanted into a patient. The use of umbilical cord cells circumvents all of the moral and ethical controversies surrounding the use of embryonic stem cells, and research on these cells, as well as on adult stem cells, offers the greatest promise for rapid deployment into a clinical setting.

♦ As an American male who was a teenager in the 1970s, I can attest to the incredibly powerful effect that the jiggling Suzanne Somers, star of the sitcom Threes Company, had on the raging hormones of red-blooded American males of the era. I'm not too proud to admit that I watched the show not for the deadpan humor of Norman Fell or the comedic timing of John Ritter, but for the substantial endowments of the young Ms. Somers, which the producers of the show put to prodigious use by packing each half-hour with as many scenes of the actress dressed in tube tops or cut off T-shirts as possible. I've been aware for the last several years that Ms. Somers has been battling breast cancer, and was extremely heartened to come across this video clip, in which she explains that she appears to be winning the battle, and that an experimental stem cell treatment helped regrow one of her breasts after breast cancer surgery. Breast cancer is serious business, as is the disfigurement its treatment can leave behind, so this was all very welcomed news. Here's Suzanne Somers, happily explaining how stem cells helped her grow a boob:




♦ Under the United States' new healthcare law, sometimes derisively referred to as Obamacare, pharmaceutical companies will soon be forced to disclose the payments they make to doctors in an attempt to increase the sales of the drugs and medical devices the companies produce (click here). Physicians are routinely paid tens of thousands of dollars in "consulting fees", are treated to all expenses paid "educational symposiums" that are most often held at luxury resorts in exotic locations (where more time is spent on the golf course than in educational conferences), and are treated to expensive dinners, all in the name of "educating" them as to the merits of a particular pharmaceutical product. Analysts have found that at least one quarter of doctors routinely taking cash payments from drug or device makers, and that two thirds accept gifts of food, including lunch for staff members and dinners for themselves.

The New York Times reports that it "has found that doctors who take money from drug makers often practice medicine differently from those who do not and that they are more willing to prescribe drugs in risky and unapproved ways, such as prescribing powerful antipsychotic medicines for children." How nice.

Under the new regulations, a website will be set up on which patients can research exactly how much pharmaceutical largess their physicians have received, and thus be able to make better informed medical decisions for themselves. All I can say is, it's about freaking time…

♦ On a very sad note, one of my favorite recording artists, the incomparable Etta James, has died. Although beset with drug abuse problems for much of her life, Ms. James had an incomparable voice, one that conveyed the deepest of emotions with a simple inflection or a throaty growl. Having spent much of my career working for a major label music company, I can attest to the fact that many of today's most lauded singing stars sound no better than you or I do when warbling in the shower (you would be shocked, believe me), their careers kept aloft by the prodigious use of electronic wizardry and slick production. Not so with Etta James, who built a career in an era when actual talent and the soul of an artist were required to achieve stardom. Sleep well Etta, your powerful essence will live forever in the hearts of many, in the form of your magnificent music.

Related articles

• Hurry up and wait for a CCSVI strategy (macleans.ca)
• Blood Vessel Condition Tied to MS, with Caveats (nlm.nih.gov)
• Risk factors for CCSVI are similar to risk factors for developing MS, UB study shows (eurekalert.org)
• Welcome (thinkccsvi.com)

Shock and Awe

Next week will mark five years since I was forced to "retire" due to my illness. It's been almost 9 years since I first received my MS diagnosis (which is now in question). In both cases, the human mind's peculiar perception of time plays its usual tricks; somehow, I feel simultaneously as if both events happened only yesterday, but also a lifetime ago. I suppose both readings are correct, as my healthy, working days do indeed encompass an almost entirely separate life than the one I'm living now, but in a strictly chronologic sense the time I've spent ill represents a relatively small fraction of my life, and the time spent not working an even smaller fraction still.

Throughout the early days of my illness, life really didn't change much, aside from an uptick in doctors’ visits, some new topics to search intensively for on the Internet, and a general sense of confused anxiety. Upon hearing my bad news, friends and family often commented on my stoicism and bravery, but the reality was that there was not much difference in my day-to-day existence in the days soon after my diagnosis. I still went to work each day, went out to dinner with my wife and friends, attended parties and other social events, and continued along as I always had, even as my symptoms gradually continued to worsen. Like the passengers on the Titanic who played soccer with the chunks of ice deposited on the ship's deck by the iceberg it had collided with moments before, I had little inkling of the shattering events that were looming on the horizon. I daresay that had I been given an unvarnished preview of what was to come, I might not have appeared quite so unflappable.

Those days, and all of the fully healthy ones that preceded them, now often seem like the first acts of a play with a heartrending surprise ending. One might think that nine years after my diagnosis, and five years after my disease had grown bad enough to give the insurance companies reason to label me permanently disabled, I'd have reconciled myself to the situation, and would have somehow grown used to my new normal. But no, the truth is that I wake up every day still shocked to discover myself trapped in my unending predicament, living in my own horrid little episode of The Twilight Zone. Yes, I make the best of it, choosing most days not to succumb to the misery that's always within arm's reach, and finding if not joy then at least contentment in much of the minutia of my day-to-day existence. Nonetheless, the reality of my ever encroaching disability means that there is no reconciling myself to any new normal, as my normal is a constantly moving target, leaving little time to mourn one loss before another shouts for my attention. There's really no good way to spin it, the situation sucks, and I guess I've just gotten good at not getting stuck in the suck.

Multiple Sclerosis (or whatever the hell it is I have) is an insidious maelstrom, a tornado that ravages just about every aspect of existence. As the disease progresses it cleaves a life in two, breaking it along a fault line between sick and healthy, between time spent fully functional and time spent fighting off encroaching dysfunction. The daily life I now lead bears so little resemblance to the one I led when healthy that my existence prior to my illness is practically a standalone piece, complete in and of itself, almost entirely divorced from my present reality. The continuing narrative of life has been shattered, and rather than proceeding from chapter to chapter, I've been forced to start an entirely new volume. I can scrutinize my healthy days as if studying a book on history, picking out my foibles and strengths, pinpointing the interconnected peaks and valleys, and can glean wisdom through such examination, but my actual connection to these events has been severed.

At times I look back with a longing so intense that it seems with just a little more effort I might somehow be transported through the years, to be given the opportunity to undo long-ago events whose impact was decidedly negative and by doing so maybe somehow change my fate, but of course this is impossible. The best I can do is use my past to inform my present, as a teaching tool to guide my thoughts and actions away from those that cause me pain and consternation and towards those that offer comfort and contentment. I suppose that's the best anyone can do, sick or healthy, but the fractured nature of my past and present make that past something more easily examined, as it's much more difficult to objectively assess one's life while still caught in its ongoing currents. Illness has extracted me from those currents, allowing me to examine my old body of work at a distance, almost as if it's that of a deceased loved one, a story with a beginning, middle, and end. In so many ways that old existence is indeed dead, and like a ship slipped beneath the waves, at times the fact that it ever existed at all is only identifiable by the random bits left bobbing on the surface after the plunge.

The inner life is also torn asunder by the shock of ever creeping paralysis, forcing introspection and a redefinition of self. When healthy, we are conditioned from an early age to define ourselves by what we do or what we possess, in many ways discouraged from concentrating for too long on who we are at our core, lest that person be at odds with the whims of society and popular culture. The illness, though, once it becomes serious enough, forces us into sequestration, sets us apart from the teeming masses. I often watch with melancholy bemusement as TV commercial after TV commercial hawks products that are utterly useless to me in my current diminished physical state. Shiny cars, exercise machines, athletic wear, item after item dangled as bait to keep the healthy ever striving, but as relevant to my existence as eggnog would be to an octopus.

I have been surprised to discover that there is a certain liberation that comes with disability. Once the necessity to work is removed from the equation, hours previously devoted to the office or worksite are suddenly placed back fully in your possession. Aside from a very fortunate few, and despite their practiced protestations, many people are wage slaves, working not to fulfill some inner passion but to maintain and advance their status quo. As the old saying goes, nobody ever lay on their deathbed and wished they'd spent more time in the office.

Upon my forced retirement, suddenly having all that time to fill was initially intimidating and unsettling, but soon enough proved to provide much opportunity for self discovery and the pursuit of interests and proclivities that had long lain dormant and might have even been forgotten. I was surprised at how quickly the cares of my working life faded away. There was no longer any need to be concerned with the deadlines, budget projections, project management, or the subtle social ballet of dealing with clients, bosses, and underlings that had been staples on my daily agenda. All of that recovered time and the clearing away of enforced responsibilities allowed for the reemergence of passions that had for many years been stifled. Through the odd combination of their unleashing and the emergent reality of my once dreaded reliance on a mobility device, I've been able to cobble together an acceptable quality of life, though keeping it cobbled together gets more challenging with the passage of time and the progression of disease.

When all is said and done we soldier on, not because of an infusion of incredible bravery or superhuman courage, but simply because there is little else we can do. Each dawn brings with it a choice, to collapse under the weight of the disease or to once again muster up the strength to make it through one more day. To the healthy it may seem that choosing the latter is somehow extraordinary, but when actually faced with that decision, choosing to collapse is decidedly unappealing. Finding the fortitude to make another stand, even if you can't stand, declares that day to be something of a victory. I'll kid you not, my disease continues to progress, alarmingly. Eventually, perhaps, the disease will win out, but I'll be damned if I conspire to play a part in its triumph. If and when the burden becomes too much to bear perhaps there will be a different choice to make, but until that day comes I raise a metaphoric glass in a defiant toast to life…