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…

Some New Photos to Ring in the New Year

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What better way to celebrate the New Year than to post a bunch of new photos to my Wheelchair Kamikaze photo gallery? Who needs silly hats, noisemakers, confetti, countdowns, dropping balls, Auld Lang Syne, consuming copious amounts of champagne, kissing attractive strangers at the stroke of midnight, dealing with amateur drunks throwing up all over the place, waiting endlessly for nonexistent taxicabs (maybe just a problem in NYC), assiduously avoiding stepping in the wide swaths of vomit left by the aforementioned amateur drunks, or hoping vainly that the coming year will provide answers to all of life's problems? Much better to post photos on your surprisingly popular MS blog.

Truth be told, in my younger, healthier days I used to be absolutely mad about New Year's Eve, even though I was a habitual prowler of the night and compulsive chaser of the seductive pleasures it promised. Most of my fellow denizens of the dark held the holiday in holier than thou contempt, horrified that our dimly lit world would be so sullied by an army of once a year dilettantes, invaded by hordes of unseasoned dabblers in the murky nocturne.

Still, the allure of New Year's Eve held me in its thrall, its promise of renewal, second chances, and new beginnings far too enticing to be passed up. The reality of the evening’s festivities rarely lived up to their anticipation, and quite often descended into a farcical scramble from one party to the next, crisscrossing the town in vain pursuit of that perfect fete that likely only existed in the imaginations of me and my companions. In retrospect those long-ago madcap journeys were far more entertaining than their intended destinations, and my youthful New Year's Eve misadventures provided fodder for many a happy memory. Yes, those were the days of wine and roses, and I wouldn't trade them for anything in the world.

I still love the idea of the out with the old, in with the new spirit of New Year's Eve, although living with a chronically disabling disease does put something of a damper on any excited anticipation of the future. The annual holidays serve as markers along the road of disease progression, as a quick review of recent New Year's Eves past makes my declining physical state glaringly apparent, and begs the question of what further insult and damage this next stanza might hold. Then again, this could be the year that things take a turn for the better, as I have some interesting new treatment options to explore (more on these in later blog entries), and my lack of a definitive diagnosis leaves open all sorts of possibilities. So, damn the torpedoes, full speed ahead! All anybody really has is the present moment anyway, the past is gone and the future is inscrutable, so live for today, and today is New Year's Eve, so might as well celebrate it like it will be the last New Year's Eve in history. Hey, if the Mayans were right, it will be (click here)…

Anyway, I seem to have veered far from my original intent to write a quick paragraph and post a few photos, so let's get on with the photo posting. The following shots are a mixed lot, almost all taken in Central Park, a few with the toy camera lens I like to play with (click here), and others extreme close ups of flowers taken with a macro adapter attached to another funky cheap lens I like to mess with. They were all shot with a camera mounted to the arm of my wheelchair, as my wonky physical state makes it impossible to hold a camera to my eye. As always, comments and critiques are highly valued, negative and positive alike. So, feel free to tell me which photos you love and which shots you loathe, and above all, I wish you all a wonderfully happy new year!


Please click on thumbnail for full size image.

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Bits and Pieces: Happy Holidays Edition

(note: for those who receive this via e-mail, this post contains some video links, which can only be accessed from the Wheelchair Kamikaze website itself)

Well, it's again that time of year when a jolly fat man in a red velvet suit slides down chimneys and performs home invasions in an endless search for cookies and milk. Yup, it appears my uncle Bart is once again off his meds. I think it may be time for an intervention…

The holiday season is upon us, but unlike in conflicts of old during which a truce was often called in reverence to the holiday, the war that MS wages upon its victims continues unrelentingly, as does the attempted counterattack being fought against MS. There's plenty of research news to catch up on, and I'll throw a few other seasonal tidbits on the Yuletide fire to keep with the holiday spirit.

So, grab a nice cup of spiked eggnog, hot cider, or kosher wine, as I submit the following items for your perusal, all the while wishing you a Merry Christmas, Happy Hanukkah, Good Kwanzaa, or, if none of those float your boat, then just a damn good week…

♦ Speaking of alcoholic beverages, a new study out of Belgium suggests that drinking booze and coffee, and eating fish may help delay disease progression in patients with relapsing multiple sclerosis (click here-may require free registration, which is well worth it for the wealth of information available on this site). Unfortunately, the same does not hold true for patients with progressive MS, whose intake of these substances didn't significantly alter the course of their disease. As usual, progressive patients are the redheaded stepchildren of the MS world, spanked in the ass and sent to bed without dinner. Smoking was found to be detrimental to both relapsing and progressive patients.

Researchers found that relapsing patients who drank moderate amounts of alcohol and coffee, and ate fish at least two times a week, had a significantly increased time of disease progression to the level of EDSS 6, which is defined as the point at which a patient needs intermittent or unilateral constant assistance (cane, crutch or brace) to walk 100 meters with or without resting. Interestingly, in progressive patients it appears that the type of fish eaten (fatty or lean) impacted the speed of progression. Patients who ate fatty fishes (such as salmon, tuna, and mackerel) fared worse than those eating leaner varieties.

The discrepancy between relapsing and progressive patients' response to the dietary influences studied is likely attributable to the fact that relapsing disease is more inflammatory than progressive, and alcohol, coffee, and fish all have anti-inflammatory properties. Fatty fishes tend to pick up more environmental toxins, which may account for their association with increased rates of disease progression.

♦ A major new study recently completed by the Mayo Clinic in collaboration with the Cleveland Clinic has the potential to completely rewrite the scientific understanding of how multiple sclerosis develops and progresses (click here, same deal with possibly having to register). For many years, the conventional wisdom has been that MS started deep in the brain, attacking white matter (myelin) first, and only later disrupting a patient's gray matter (nerve cells). In examining brain biopsies taken from patients very early in the disease process, the researchers discovered that, much to their surprise, there was inflammation and damage being done to the meninges (the membrane covering the brain), the subarachnoid space (which contain cerebrospinal fluid), and the gray matter, occurring concurrently with early damage done to myelin. In other words, instead of working from the inside out, the disease may work from the outside in.

The fact that such a basic understanding of the disease may have been wrong for many decades only underscores how pitifully little is actually known about the MS disease process, despite the tremendous amount of time spent researching the disease. This could be a discovery of terrific import, and may eventually turn the way MS is treated completely on its head. Interestingly, some news outlets reported this research as finding neurodegeneration in the absence of inflammation, which is incorrect. One of the lead researchers on this project, Dr. Claudia Lucchinetti, has done some previous research that hinted at such neurodegeneration, but this most recently released research finds inflammation throughout the CNS of patients very early in the disease process. Here's a video of Dr. Lucchinetti talking about the discovery:





 
♦ Another new hypothesis about the genesis of multiple sclerosis is being published in the Quarterly Review of Biology. Entitled "MS Is Not a Disease of the Immune System", the paper suggests that MS is a result of faulty lipid metabolism, or the inability of the body to properly uptake, breakdown, and release lipids (click here). In this scenario, an accumulation of toxic lipids, in conjunction with other genetic or environmental factors, leads to damage in the central nervous system and eventually to a clinical presentation of multiple sclerosis. Rather than get into a lengthy explanation here, I'll refer you to the blog of Nicola Griffith, a writer living with MS (click here). Her description of this new theory is quite clear and extremely well presented, and a big thanks to Nicola for bringing this research to my attention.

♦ In keeping with the Christmas spirit, here's a lovely little story about an MS patient who was ripped off to the tune of $65,000 by her health aide (click here). I'm constantly coming across news stories about MS patients being assaulted, having their wheelchairs or scooters stolen out from under them, or otherwise being criminally victimized. WTF? Some humans simply don't deserve to be called humans. Now, we've all committed deeds that would make our mothers embarrassed to have borne us, but by and large the MS patients I've met are a pretty decent lot. Who knows, maybe some were scumbags before getting sick, but I don't get that sense. Although my rational self knows not to expect some sort of easily discerned "just universe", it still galls me to no end to watch the nightly news and see a parade of murderers, rapists, and child molesters sauntering effortlessly past the cameras, even while handcuffed. Why do these evil, demented, living and breathing turd blossoms enjoy robust good health while so many decent folks I know suffer miserably with a progressively crippling disease? That's strictly a rhetorical question, no need for any direct answers…

♦ Here's a thought-provoking piece published in the Washington Post, entitled "Was My Doctor Loyal to Me, or to the Drug Companies?" (click here). Now, there's a question that has crossed the mind of many a patient. With the tentacles of Big Pharma reaching into almost every aspect of what I like to call the Medical Industrial Complex, one can never be sure if treatments are being offered because of their superior efficacy, or because the physicians prescribing them have been influenced by the largess of the drug companies producing them.

My personal neurologist doesn't allow any pharmaceutical reps into his clinic, and the facility is completely absent posters, pens, pads, or promotional materials of any type hyping one drug or another. This is in direct contrast to the offices of all of my other physicians, upon which the name of one pharmaceutical or medical device product or another is emblazoned on every available surface, placed strategically to be ingested wherever my gaze happens to land. Why the practice of Pharma companies paying off doctors (either as "consultants" who barely do any consulting, or with invitations to lavish "educational symposiums" held in luxury resorts, whose primary teaching function appears to be how to sink an 18 foot putt) is legal is beyond me. When I worked in the music industry, the practice of paying off radio station managers and DJs to play our labels' music was called "payola", and people who were caught engaging in this practice wound up doing time in the clink. Not so with Big Pharma and physicians, though. In an industry where the health and well-being of an entire nation is concerned, barely camouflaged bribery is considered business as usual. Ho Ho Ho, Merry Christmas…

♦ This is the time of year when charities rake in a tremendous amount of donations. I'm often asked which MS nonprofits are most worthy of my friend's and family's money, so here's a list of very worthy MS research organizations. These are all smaller outfits, dwarfed by the giant elephant of the MS nonprofit universe, the National Multiple Sclerosis Society. Unlike some other bloggers and activists, I have nothing against the NMSS. Although it might not always act quite the way I would like it to if I were king of the forest, the organization does do a tremendous amount of good across a wide array of issues impacting patients suffering from Multiple Sclerosis. The problem is that to the general public the NMSS is THE multiple sclerosis organization to which to donate, leaving the little guys scrambling for scraps. The following organizations all do exceptional work, and are very deserving of any donations that flow their way:

· The Accelerated Cure Project (click here)-this group maintains a large MS repository, consisting of blood samples and extensive demographic data taken from well over 1000 MS patients, making it an extremely valuable resource to researchers worldwide. 2011 saw the 50th research project done using repository samples and data, and the ACP is currently putting together a repository devoted to neuromyelitis optica and other demyelinating diseases.

· The Myelin Repair Foundation (click here)-the MRF is devoted to revolutionizing the way MS research is done, dramatically shortening the time it takes to shepherd a potential treatment from discovery through regulatory approval. The MRF, founded by Scott Walker, himself an MS sufferer, is especially devoted to hastening the development of neuroregenerative and neuroprotective therapies, which are the holy grail of MS research.

· The Multiple Sclerosis Research Center of New York (click here)-this is the research arm of the MS clinic that takes care of me, under the direction of Dr. Saud Sadiq. This completely independent research center is on the cutting edge of MS research, and recently won approval for one of the first regenerative MS stem cell trials to be done in the United States. In addition to extensive stem cell research, MSRCNY scientists are hard at work exploring new and more effective MS treatments, looking for biomarkers to increase the diagnostic accuracy of the disease, and providing dramatic symptomatic relief for MS sufferers. Lots of outside of the box thinking going on in this place.

· The Buffalo Neuroimaging Analysis Center (click here)-BNAC is at the forefront of CCSVI research, conducting extensive imaging studies on MS and non-MS subjects that have already shed much light on the CCSVI hypothesis and its role in the fight against MS. Led by world-class researcher Dr. Robert Zivadinov, BNAC is also undertaking one of the first CCSVI treatment trials being done to strict scientific standards. CCSVI has the potential to profoundly change our understanding of MS, and BNAC has the potential to be the organization that unlocks the secrets of CCSVI.

· The CCSVI Alliance (click here)- the CCSVI Alliance promotes education and research about CCSVI and its relationship to Multiple Sclerosis by providing objective information to the MS community, supporting medical investigations of CCSVI, and fostering collaboration among patients, advocates, and professionals. They are currently working on patient education programs at major conferences around the country, and are working hard to encourage the interdisciplinary cooperation needed to unravel the mystery of CCSVI.

Well, as we come to the end of this post, I realize it might not have been filled with as much joviality as I initially intended. Sorry for that, and despite the "Bah Humbug" nature of much of the above, I'd like to sincerely wish all WK readers (and all non-WK readers) a scintillating holiday season. May all your wishes be realized, and all your dreams come true.

Here's a holiday song that seems especially fitting given the current state of world economic turmoil, which finds far too many struggling just to keep their heads above water. It's performed by a great rock 'n roll band that has long been vastly underrated. As the song says, "Have yourself a Very Merry Christmas, Have yourself a good time, But remember the kids who got nothing, As you're drinking down your wine".

Amen
 



 

RIP Christopher Hitchens

Related articles

• Multiple Sclerosis May Take a Different Pathway Than Previously Thought (nlm.nih.gov)
• Biopsies Reveal Nature Of Brain Lesions Early In MS Progression, Countering Conventional Wisdom (medicalnewstoday.com)

You Can't Be Too Strong

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it  through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…

Research Roundup: CCSVI, New Drugs, and Other Items of MS Interest

The last two months have brought a deluge of MS research data, much of it coming out of October's ECTRIMS (European Council on Treatment and Research in Multiple Sclerosis) conference, this year held in Amsterdam. While the meeting was dominated by the release of drug study data (naturally), there was also tantalizing research data revealed regarding CCSVI as well as a number of other MS related matters. I'll attempt to provide a broad overview of the recent research goings-on, and will try my best to not put readers to sleep with too much scientific mumbo-jumbo. Just in case, better grab a blanket and a pillow, because I have a feeling this is going to be long…

♦ CCSVI - On the CCSVI front, ECTRIMS appears to have been the latest venue for the ongoing pissing war that's being waged between CCSVI supporters and detractors, featuring dueling research reports, most of which are entirely based on imaging studies finding greater or lesser degrees of venous abnormalities in MS patients. To my mind, the problem with all of these studies, both pro and con, is that the imaging techniques used (MRVs and Doppler sonography) are prone to technical and/or operator error, so the wide disparity in findings may more reflect the failings of the technology then the hypothesis being explored. MRVs are highly subject to artifacting, and sonography is extremely operator dependent. While time and experience has brought more accuracy to both technologies in regards to revealing CCSVI, the fact remains that the only way to assess the state of a patient's veins with a high degree of accuracy is to actually go in and explore those vessels with an invasive (minimally) catheter venography, which so far has proved impractical for large-scale study purposes, especially when it comes to subjecting healthy subjects to a potentially (again, minimally) risky procedure.

While quite a few studies were presented that refute the theory that multiple sclerosis has a vascular component (click here), some others provided intriguing finds that support the CCSVI hypothesis. The most striking of these was a small study out of the esteemed Cleveland Clinic that compared jugular and azygos veins taken postmortem from the cadavers of MS patients and healthy control subjects. This of course begs the question, can a cadaver truly be a healthy control subject? Certainly, healthy though they might once have been, at the very least they'd be terrible guests at dinner parties. But I digress… The unique aspect of this study is that investigators were actually able to hold and examine the veins in question, the only imaging technology utilized being the ever trusty human eye (presumably aided by some type of optical magnification).

Although quite small, limited to only 13 subjects, the study hints at some rather dramatic trends (click here). The researchers looked at the veins of 7 MS and 6 non-MS subjects, and found a variety of structural abnormalities and anatomic variations. Interestingly, vein wall stenosis (narrowing) occurred in equal numbers among the MS and non-MS samples. More prevalent in the MS veins, though, were abnormalities involving malformed valves and anomalous membranes (structures such as webs and septums that shouldn't be there) which could lead to disrupted blood flow. These types of abnormalities would be difficult to spot using noninvasive imaging methods, casting further doubt on studies reliant strictly on traditional MRV in particular, and also Doppler sonography unless the operators were well-versed in protocols specifically designed reveal such anatomic irregularities.

The findings of this study, if borne out by future, larger investigations, could shed light on the wide disparity in benefit (or, often, lack of benefit) experienced by those who have undergone CCSVI venoplasty (click here for a terrific discussion of this, written by Julie Stachowiak of about.com). Many CCSVI treatment procedures, especially those done within the first year or so after knowledge of CCSVI hit the mainstream MS population, concentrated primarily on areas of venous narrowing, which the Cleveland Clinic findings suggest are not as abnormal as first thought. Since these narrowings were seen in equal numbers among MS and non-MS subjects, they may fall within the parameters of normal anatomic variation, and have little actual significance.

The high prevalence of malformed or misplaced valves and other anatomic structures within the veins of MS patients, on the other hand, could very well prove to have considerable import. Although the goal of CCSVI treatment has in large part shifted away from simply expanding narrowed veins and moved more towards clearing malformed or otherwise broken valves, aberrant membranes  would in many cases be difficult to treat using the balloon venoplasty techniques currently employed to address CCSVI. In theory, some of these treatments may have coincidentally alleviated the effects of such abnormal membranes by disrupting them and compressing them against the vein walls of treated patients. If this were the case, and these membranes eventually returned to their original form, this might explain the far too common phenomenon of restenosis experienced by patients treated for CCSVI. The failure to properly treat malformed valves and abnormal and misplaced membranes within the veins might also explain the failure of CCSVI treatment to significantly benefit many of those who have undergone treatment. This of course assumes that the MS-CCSVI link exists, which despite a growing body of anecdotal evidence, still needs to be confirmed by scientifically robust studies.

The Cleveland Clinic cadaver study certainly illustrates how little we still actually know about CCSVI and the proper way to treat it, and that some of the initial assumptions upon which treatment methodologies were based might have been misguided. Certainly, should CCSVI prove to be a vital piece of the MS puzzle, CCSVI venoplasty techniques must be refined, and very likely equipment and devices specifically designed to treat the condition effectively need to be developed and put on the market. As I've mentioned in previous posts, the study and treatment of CCSVI is still in its infancy, and patients and physicians alike need to be careful not to put the cart before the horse, despite the tremendous amount of hope and excitement that CCSVI has generated.

Another interesting CCSVI research project, conducted by the Buffalo Neuroimaging Analysis Center (BNAC) looked at the phenomenon of CCSVI in healthy patients, and attempted to identify risk factors that might be involved in the development of the condition (click here). BNAC has imaged hundreds of MS patients and healthy controls, and found that CCSVI is present in roughly 25% of non-MS subjects. By pinpointing the factors that might lead to the development of CCSVI in otherwise healthy people and cross-referencing these with known risk factors for MS, the relationship between CCSVI and MS might better be assessed.

Since a picture is said to be worth a thousand words, I suppose a video made up of moving pictures would be worth several million words, so, in the interest of saving you pages and pages of reading, here is the head researcher at BNAC, Dr. Robert Zivadinov, discussing the results of this study:






Indeed, the findings of this study are fascinating, in that many of the known risk factors of MS (particularly infection with the Epstein-Barr virus) also seem to be prevalent in healthy subjects who exhibit CCSVI when subjected to noninvasive imaging techniques. As Dr. Zivadinov stated, study findings such as these only emphasize the need for continued, multidisciplinary research into the CCSVI-MS connection. My e-mail inbox sees a steady flow of notes from patients who have benefited from CCSVI treatment, but also a disturbingly high number of reports from patients disappointed in the lack of results they've experienced. The CCSVI story has only started to be written, and with more research results set to be released in the coming months, our knowledge of the condition should expand exponentially.

Perhaps the most well-known MS sufferer to undergo CCSVI treatment is Montel Williams, who recently discussed his experience in this video with the celebrity physician Dr. Oz. Unfortunately, Dr. Oz gets some of the particulars about CCSVI treatment wrong, but there certainly is value in Montel's testimony. Here is Montel's story, in his own words:





♦ Pharmaceuticals -some late stage MS drug trial results have been released recently, most describing extremely positive results. Disparaging Big Pharma is a favorite pastime of mine, and I think the pharmaceutical companies deserve all the disparaging they can get, due to their sometimes devious and deceitful ways of doing business, and their iron grip on most of the medical research that takes place in the USA. Unlike some other MS advocates, though, who disparage all Big Pharma MS products as snake oil, I've come to realize the value of the ever-expanding arsenal of disease modifying drugs. Though none of them offers anything close to a cure, for those patients who find them effective, they do increase quality of life, sometimes dramatically so. Of course, many of them do come with a laundry list of frightening potential side effects, but by reducing relapse rates and in some cases alleviating the burdens of disability, the current crop of disease modifying drugs has been a godsend to the patients on whom they are effective. Hopefully some of the newer compounds on the horizon will be all the more effective while at the same time limiting deleterious side effects.

One of the most promising new compounds is BG 12, an oral MS drug being developed by Biogen. Also known as oral fumarate, BG 12 has been shown in late stage phase 3 trials to not only dramatically decrease relapse rates and the number of lesions seen in the MRIs of treated patients, but also appears to significantly delay the progression of the disease in some patients (click here). Research results showed that BG 12 reduced relapse rates by 50% when compared to placebo, and also reduced the risk of disease progression by 38% over placebo. The drug works in a way very different than any existing MS medication, by suppressing pro-inflammatory factors called cytokines, and possibly providing some protection against nerve cell death. Encouragingly, the drug also appears to have a very benign side effect profile, with the most common side effects being gastric disturbances and diarrhea. The drug does not appear to open patients up to opportunistic infections or cancers, as do some of the other available MS pharmaceutical therapies. Given that BG 12 is an oral drug that seems to be very effective, and carries with it a relatively benign side effect profile, I expect this drug may prove to be very popular with patients and the doctors who treat them.

Genzyme announced the results of phase 3 trials of the drug Alemtuzumab, which was previously known as Campath and will be marketed under the name Lemtrada (click here). This very powerful drug is given intravenously, with infusions once a day for 5 consecutive days for the first treatment and then, a year later, 3 infusions during 3 consecutive days. Lemtrada severely depletes the human immune system, acting on both lymphocytes and monocytes, which are then reconstituted by the body, resulting in permanent changes in the immune systems of patients treated with the drug. In effect, Lemtrada "reboots" the immune system, in the hopes that the reconstituted immune system will no longer attack a patient's own nerve cells. Trial results showed Lemtrada to reduce relapse rates by 49% when compared to patients taking Rebif, along with a 42 percent reduction in the risk of sustained accumulation (worsening) of disability as measured by the Expanded Disability Status Scale (EDSS). Previous trials have shown that the effects of Lemtrada are very long-lasting, with patients showing significant benefit five years after initial treatment ended (click here). However, while these results are very impressive, Lemtrada does carry with it the risk of some serious side effects. About 16 % of treated patients develop autoimmune thyroid disease, and 1% develop a potentially lethal autoimmune blood disorder known as ITP. Because of this, patients using the drug must be carefully monitored, and use of Lemtrada may be limited to patients with highly active disease. Research is currently underway to develop ways to identify patients most at risk for the autoimmune side effects of Lemtrada, to more easily identify patients who should be excluded from this treatment option (click here).

The potential MS vaccine Tovaxin has been granted fast-track status for the treatment of SPMS by the FDA (click here). Fast-track status can cut in half the time it takes a drug to be approved, and if Tovaxin does eventually get such an approval, it will only be the second drug specifically approved for the treatment of secondary progressive multiple sclerosis in the United States. Tovaxin is a compound individualized for each patient, which desensitizes a treated patients immune system T cells to their own nerve cells, thereby stopping the autoimmune reaction (click here). Several years ago, Tovaxin failed to meet the goals of its phase 2 trials (click here), and although it had shown great promise, was left for dead. The company developing it, Opexa, later re-examined the failed trial data and determined that Tovaxin had indeed demonstrated positive effect, and now Tovaxin has risen like Lazarus, giving it (and Opexa's stockholders) new life…

A study done to assess the risk of stopping Tysabri for "drug holidays" showed that this practice significantly increases the risk of patients suffering MS relapses within six months after stoppage (click here). The idea of drug holidays came about because Tysabri is linked with PML, a potentially fatal brain infection, the risk of which increases with the amount of time a patient is on Tysabri. It was thought that taking occasional breaks from Tysabri might allow the immune system to reconstitute itself enough to combat the emergence of PML, but this study suggests that temporarily switching to another MS therapy unfortunately carries with it an increased risk of patients suffering an MS relapse. Kind of a "damned if you do, damned if you don't" scenario…

♦ Miscellaneous Studies - A variety of other MS related research results have also recently been announced. The active ingredient in the spice saffron may prove to be effective in combating MS (click here). In experiments, this ingredient was shown to combat inflammation and cell stress, at least in petri dishes and test tubes. Interestingly, saffron is often used in Asian cuisines, and the incidence of MS is much lower in Asian countries than it is here in the West. The spice tumeric (cumin) has also been shown to have strong anti-inflammatory properties, and this spice too is used heavily in some Asian cuisines. So go out and have some Indian food, it's good for you. Chicken Tikka Masala, yum…

Researchers in Sweden have discovered that young people between the ages of 16 and 20 who work overnight shifts or odd hours are twice as likely to develop multiple sclerosis as those who never worked such hours (click here). The researchers explained the sleep restriction associated with working the night shift has already been shown to increase the risk for certain health problems, including heart disease, thyroid disorders and cancer, likely by interfering with melatonin secretion and increasing inflammatory responses. Kind of an odd finding, but upsetting circadian rhythms has been shown to have an adverse effect on health, so these Swedish meatballs might be on to something…

German researchers have linked gut bacteria to multiple sclerosis (click here). We all have millions of microbes living in our guts, normally to no ill effect. However, more and more research links these bacteria to some autoimmune diseases. The researchers who did this study used mice genetically engineered to develop a Multiple Sclerosis like disease, and allowed some to develop gut bacteria, and others to remain gut microbe free. About 80% of the mice with gut bacteria went on to develop MS like symptoms, while none of the sterile mice did. While it's a far cry to go from mice to humans, this study does demonstrate that intestinal microbes do interact with the immune system, something that has long been suspected. Of course, most of the bacteria are in our guts is harmless, and some even serve a beneficial effect, but these research results certainly warrant further investigation.

Well, let's call it a wrap. There's an astounding amount of MS research being conducted, much of it driven by the huge profits to be made treating MS patients with hyper expensive drugs that tamper with the little understood human immune system. Still, as is evidenced by the last few investigations I mentioned, the breadth of MS research is quite wide, and each bit of knowledge uncovered may hold the key that finally unlocks the puzzle that is MS. Certainly, research into CCSVI has the potential to upend much of the conventional wisdom regarding the disease, and it's of the utmost importance that MS patients themselves drive such research forward, by educating themselves, advocating for energetic and innovative research into the disease, and agitating against those who stand in the way. Power to the people, y'all…

Related articles

• Risk Factors For CCSVI Are Similar To Risk Factors For Developing MS (medicalnewstoday.com)

A Few Bits, a Couple of Pieces, and a Happy Thanksgiving to All…

With Thanksgiving week upon us, I'm going to keep this one relatively short. Stay tuned, though, as next week I plan on posting a review of the latest in MS research, as there's been lots of important info released over the past six weeks or so. I'll cover the latest news on CCSVI, disease modifying drugs, and other MS research findings, along with the usual few dollops of opinion tossed in.

Please, don't let the inevitable tremendous anticipation of next week's post distract you from enjoying the holiday festivities. As difficult as it may be, try to stay focused on the turkey.

For those readers outside of the United States, who don't celebrate Thanksgiving this week, you'll just have to find something else to occupy your time. My European friends can busy themselves with happy thoughts about figuring out how to survive the impending collapse of the continent's economic system. Actually, we all can probably occupy our minds with such thoughts, as things aren't so hot in the US or Asia either.

WK readers in Canada, whose relatively sane economic policies have spared that country much of the turmoil roiling the rest of the world, will have to find some other distraction. Since Canadian Thanksgiving was last month, perhaps thoughts of hockey will have to suffice, or finding new and entertaining uses for maple syrup. It'll be hard to beat Sortilege (click here), though, which for the uninitiated is some pretty strong hooch made with maple syrup. BTW, kudos on the Canadian national anthem. As far as national anthems go, "Oh Canada" kicks major booty…

Okay, I said I was going to keep this short, and it's already getting long, so on with the show…

♦ A neuroimmunology researcher from the Scripps Institute sent me a note alerting me to an online petition she has started (click here), urging the US government to devote more funds to basic biomedical research at the National Institutes of Health.
 
I agree with her sentiments wholeheartedly, as the NIH is a precious resource that can't be left to wither on the vine, and is one of the last bastions of unbiased large-scale medical research left in the USA. The vast majority of our medical research is funded by for-profit pharmaceutical and medical device companies, who naturally devote their hard-earned bucks to research that stands a chance of turning them a huge profit. Don't get me wrong, I'm a big fan of capitalism, but money and medicine often make for terrible bedfellows. Even in this time of looming budget deficits, squeezing the NIH of funds will do nothing to solve our economic problems. Consider the following numbers:

For 2011 budget, U.S. spending on:
Social security was $2564 per citizen (20.8% of the budget)
Defense was $2203 per citizen (18% of the budget)
Medicare was $1569 per citizen (12.8% of the budget)
Medicaid was $1172 per citizen (7.8% of the budget)
NIH was $99 per citizen (0.8% of the budget)

Certainly, the funding of medical research is one of the last places we should be looking for savings. Finding newer and more effective treatments and even cures for dread diseases would pay huge dividends in the long run, both in human capital and reduced health care costs. I would think this issue is something that rational citizens across the political spectrum should be able to agree on. So please sign the petition…

♦ I recently came across an interesting new medical information website, called Medify.com (click here). The site offers links to lots of research abstracts and papers, along with patient to patient communities. A wonderful source of medical info, some of it otherwise hard-to-find, well worth checking out.

♦ Saving the best bit of medical info for last, here's some extremely exciting news: one of the nation's first multiple sclerosis stem cell therapy trials has been given the green light (click here), and should be soon underway. The Multiple Sclerosis Resource Center of New York (MSRCNY), in conjunction with the International Cellular Medicine Society (ICMS), will be conducting a 20 subject trial on patients with a definitive diagnosis of progressive MS, using mesenchymal stem cell derived neural progenitor cells, harvested from the patients' bone marrow, in an attempt to regenerate damaged nervous system tissues.

The director of the MSRCNY, Dr. Saud Sadiq, is my personal neurologist, and I know firsthand that his research facility, staffed with world-class scientists from around the world, has been hard at work for many years doing groundbreaking research in preparation for this trial. Stem cell therapy offers tremendous hope for MS patients, as it holds the promise of actually repairing the damage done by MS and restoring function lost to the disease. Let's all hope this first trial is a resounding success, one from which we all may reap tremendous benefit in the years to come. The trial is set to run for three years.

♦ I leave you with the following piece of eye candy (it's not hard on the ears, either), which is simply breathtaking. It takes 30 seconds or so to really get going, but be patient, and you'll be amazed by a stunning natural phenomenon, created by nothing more exotic than a flock of starlings…



Murmuration from Sophie Windsor Clive on Vimeo.


 

Happy Thanksgiving! Gobble, gobble…

Related articles

• NIH Seeks Advice on Budget Crunch (news.sciencemag.org)

Mind the Gap

When riding on the London Underground (subway), passengers are warned to "mind the gap". This is a reminder to beware the space between the subway car and the platform, which can pose a hazard to unwary folks entering or exiting the train. Having never been to England, I know this only from the movies, but I would imagine that nothing has changed and passengers are still reminded to take care to avoid any accidents. You've got to love the polite but direct way the British deliver this warning. Mind The Gap. Here in New York City, a similar official admonition would probably be something like "Look Alive, Jackass".

Be that as it may, in the course of our lives we are all confronted with gaps, both physical and existential, and, as with so many things, dealing with a chronic illness only magnifies these breaches. Perhaps the most difficult gap people come to grapple with is the sometimes gaping chasm between what they want and what they receive. We all start out with minds filled with dreams of who and what we'll be, a little preview clip of our own lives playing repeatedly in our heads. Despite ambitions that differ from individual to individual, the scenes playing out in our imaginations generally include joyful images of success, romance, and immense satisfaction. Aside from a very fortunate few, though, more often than not, as the paths of our lives unfold these imaginings divert increasingly from reality, and our expectations adapt to fit the circumstances in which we find ourselves.

When I was a little boy I wanted to be either a paleontologist or a veterinarian. I loved dinosaurs and dogs, so the future seemed clear. When I got older, in adolescence and early adulthood, I fancied myself a writer or rock star, in either case living large and thoroughly enjoying it. For a while I did front a rock band, and in some dusty folder packed away in a box whose location is now forgotten lives the yellowing, long untouched beginnings of a novel, so old it was written on a typewriter. I did the starving artist thing for a while, but found I could only run away from responsibility for so long, and eventually had to (gulp) cave in and take a "real job", to my absolute horror and chagrin. Surprisingly, after the initial shock wore off, my ambitions adapted and fell in line with my new reality, and I found myself thirsting for advancement in my new field of employment (TV and video production). Still, though, I was regularly haunted by the remnants of my old dreams, and despite a career that turned out to be relatively successful, somewhere deep within my soul flickered embers of disappointment, a feeling that I had somehow sold myself short.

When healthy, though, it was easy enough to placate myself with thoughts of the future. Even though I hadn't achieved the summits for which I had originally set out, the future was still an open book, and I could sit at my desk and pleasantly daydream about a tomorrow that was quite different from today. During the course of my life, I had jobs I liked and jobs I hated, periods filled with romance and also times of intense loneliness, episodes of mile a minute excitement punctuated by stretches of stone cold boredom. Through all of these ups and downs was always the promise of the future, an intensely strong motivational force that perpetually fueled the desire to plow onward. The gap between what I wanted and what I received could be papered over and camouflaged by the anticipation of a future that might still hold some magical surprises.

Living with a progressively disabling illness completely changes the equation, though. Instead of a future holding visions of grand dreams fulfilled, now the thought of days to come holds quite a bit of trepidation, the clouds coming over the horizon looking threatening indeed. I've watched the right side of my body slowly become essentially useless, and now the left is proceeding down a similar path. Of course, there is always hope, in the form of stem cells, CCSVI, neuroprotective and neuroregenerative therapies, and any one of a number of alternative treatments, but I'll not kid myself. As a man who likes to gamble, I have a good understanding of odds relative to eventual outcomes, and if this was a horserace, the pony named "Wheelchair Kamikaze Gets Cured" would be a definite longshot. Still, longshots do occasionally come in, and when they do the payoff is large and sweet. I've always been a guy to back the underdog, and I've cashed in on my share of longshots, so I am by no means counting myself out, but my situation has certainly put a damper on my proclivity to daydream about the future.

Of all the things that MS robs from those that it afflicts, perhaps it is this pilfering of a future filled with promise that has the potential to wound the most. Without it, the gulf between "wanted" and "received" can be viewed with crystal clarity. When healthy, it's easy enough to leave the mistakes of the past behind, because the activities of the present and anticipation of the future serve as kinetic distractions. Life proceeds like a twig caught in a flowing river, the headlong rush leaving little time to ruminate over the treacherous rapids or dangerous waterfalls that have already been navigated. Now, though, life has been cleaved in two along a fissure called illness, leaving me plenty of time to examine the intricacies of my existence before I got sick and pick apart the tangle of circumstances, some intended and some coincidental, that littered the path I followed.

Though there is much wisdom that can be gained from such retrospective examination, there's also plenty of room for regret. I certainly made my share of mistakes, some of them doozies, and now that my past existence has for all intents and purposes been separated from my current narrative, it's far too easy to get lost in a rush of "I should haves" and "I could haves". Some of these are relatively petty, like why the hell didn't I learn to scuba dive during the 10 years I lived in Florida, but others are more profound, "should haves" that had the potential to fundamentally impact my existence, lost opportunities that loom especially large now that the timeline of my life no longer runs in a continuous fashion, but rather as a whole broken into pieces. Might there have been a choice along the way that would have spared me my current predicament?

As a person dealing with a progressively disabling disease, losing the previously unappreciated luxury of burying the past in anticipation of the future leaves one to either flounder mournfully and angrily at the cruelty of the fates, or to consciously glean whatever positives can be plucked from the past and concentrate on making the most of the present. For all people, sick and healthy alike, the past has only as much influence on the present as it is allowed to have, although this can be a difficult concept to grasp and act upon. Those of us who have seen our lives divided by unfortunate circumstance, who have received a future none of us would have ever wanted, are forced to reconcile ourselves to this most unfortunate gap and consciously make the choice to maximize the present as an entity unto itself, divorced of the past and independent of whatever the future may hold.

Thus, we are impelled to mind the gap, and make the most of every day. The future may be frightening and the past of little consequence, leaving this day a standalone vessel which we can fill with purpose and contentment, paying little mind to desires left  unrealized, instead focusing on appreciating that which we have and not lamenting our losses. By consciously taking it day by day, hour by hour, minute by minute, and second by second, fulfillment can be found in spite of this infernal illness, the gap between wanted and received reduced to an inconsequential sliver.

So, mind the gap, lest the gap mind you…

(Not sure what that last line actually means, but it sure sounds good, kinda spooky, even…)