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Bits and Pieces: CCSVI, MS Meds, The Scum of the Earth, and More…

Posted Apr 17 2011 12:03am
Hula Girl Image by Marie Carter via Flickr

I'll start out with some shameless self-promotion, because it's my blog and I can do anything I want with it. So there.

On Wednesday, April 20, from 8 PM-10 PM, I'll be a guest on the Internet radio show "MSLOL-Radio: "It's All about the Blog" ( click here ). Hosted by the ever affable Amy Gurowitz ( click here ), I'll be joined on the show by Lisa Emrich, MS blogger extraordinaire ( click here ). Listeners will be able to ask questions via phone or instant message, so you'll be able to join in on the fun. Please tune in, if only to hear how many times I can say "um" in a single sentence…

The MS universe was dominated this past week by news coming out of the annual meeting of the American Association of Neurology, this year held in Honolulu, Hawaii. Yes, those neurologists have it rough. There were lots of presentations given on a slew of drugs currently making their way through the research trial pipeline (no shock there), and some controversial reports on CCSVI (no shock there, either). I'll also throw in a few other items of interest (at least my interest), so hopefully you'll find this edition of Bits and Pieces worthy of your time and attention…

  • First, The CCSVI Department: the big CCSVI buzz out of Honolulu was the publication of a paper detailing the results of the Buffalo Neuroimaging Analysis Center's Doppler ultrasound study of MS patients and healthy controls. The initial results from the study were first released over a year ago, but this is the first time they were published in a medical journal ( click here ).

    The Buffalo researchers found that about 55% of MS patients tested positive for CCSVI, as did about 22% of healthy control subjects. Additionally, about 45% of patients with other neurologic diseases also tested positive for CCSVI. While there is some dispute over the accuracy of the numbers, especially those of the healthy control subjects, some of whom were family members of the MS patients tested (though not all blood relatives), the real ruckus was started by the conclusions of the lead researcher, Dr. Robert Zivadinov, who stated that CCSVI was likely not a cause of MS, but rather appeared to be caused by the disease. This conclusion set off a frenzy of news reports screaming that the entire CCSVI hypothesis had been thrown into doubt (click here and here ), and the usual shit storm of debate on Internet MS forums and Facebook pages.

    To my mind, at least, the question of cause and effect is secondary to inquiries as to whether or not treating the venous abnormalities now known as CCSVI actually help the symptoms of MS patients. This can only be ascertained by doing robust treatment trials of CCSVI venoplasty, some of which are already underway, with more coming ( click here ). The study does show that there is a high correlation between venous blockages and MS, a finding that alone warrants much more study. For some very good reporting on the Buffalo study, please watch the two videos at the top of this article ( click here ), produced by CTV of Canada. The second contains a substantive interview with Dr. Zivadinov himself, who clearly thinks that his findings do not invalidate the CCSVI hypothesis, but instead beg for robust follow-up studies.

  • The MS Meds Department: predictably, since almost all MS research is funded by big pharmaceutical companies, the MS portion of the AAN meetings was dominated by progress reports on new MS drugs working their way to the market. Two new oral drugs, Biogen's BG-12 ( click here ) and Teva's Laquinimod ( click here ) both showed positive results, although the Laquinimod results were found by some (investors) to be disappointing ( click here ). Interestingly, BG-12 appears to work, at least in part, by being a neuroprotective agent ( click here ), unlike most other MS drugs, which are designed to primarily suppress or modulate the immune system.

    The MS vaccine Tovaxin, once given up for dead ( click here ), has apparently risen from the grave, as its manufacturer, Opexa, released positive test result data ( click here ). According to the research, Tovaxin works best on patients who have had no previous exposure to any other MS disease modifying drugs. Not surprisingly, the price of Opexa stock went through the roof on the news ( click here ). I'll refrain from making my usual snarky comment about the crass commercialization of disease, and how much it makes me want to vomit. Whoops, looks like I didn't do such a good job at refraining…

    The most dramatic pharmaceutical findings involve a drug known as Campath, produced by Genzyme, which appears to be startlingly effective in eliminating MS symptoms in patients, even for years after they've stopped taking the drug ( click here ). Campath is a drug given by infusion two or three times a year, and the recently released findings, which involved patients who had taken the drug for three years, showed that after five years 65% of treated patients were free of clinically active disease, and 87% were free of accumulated disability. The drug is not without its downside, though, as 30% of treated patients developed autoimmune thyroid disease. Campath is also associated with a potentially serious blood clotting disorder, and an increased incidence of respiratory and other infections.

    The problem, of course, is that none of these drugs address the underlying cause of MS, which remains unknown. Drug companies are making so much money by finagling with patients' immune systems, and turning those patients into customers for life, that very little research into the mysterious disease trigger, or, more likely, triggers, has been funded and undertaken in the 20 or so years that the autoimmune theory has reigned supreme. This should have every MS patient outraged. Unlike some other MS activist, I can't condemn the current MS drugs en masse, since they do increase the quality of life of a proportion of patients taking them, but the lack of research into the roots of the disease does make my head explode.

  • This brings us to The Root Cause Department: a recent look at disease clusters in the US found an MS cluster in the small town of Wellington, Ohio, in which 25 cases of MS were reported within the six block radius ( click here ). This would seem to point to some kind of environmental factor (something infectious or toxic) being involved in triggering MS, at least in some patients. There have been quite a few MS clusters identified through the years, but none has ever yielded answers as to what created it ( click here ). Though these clusters don't prove anything, they do provide plenty of food for thought.

    In my opinion, what we call multiple sclerosis could very likely be a collection of similar diseases, with a wide variety of causes and triggers. Certainly, a genetic predisposition appears necessary, and from patient to patient the trigger that sets off that predisposition very likely varies. Possible triggers could include vascular problems, infectious agents, toxins, dietary and vitamin deficiencies, or a combination of factors. I think it very likely that future MS therapies will need to be tailored to each individual's particular disease characteristics. Of course, the problem lies in sorting all of this out, a process to which tragically few resources are currently being devoted. Too much money to be made figuring out new and better ways of stomping on the human immune system…

  • The What the Fuck Is Wrong with the World Department: I have recently been coming across way too many accounts of crimes being committed against MS patients. From scooters and wheelchairs being stolen (click here and here and here ), to MS patients being robbed and assaulted (click here and here ) to people masquerading as MS patients in order to make off with donations to MS nonprofits ( click here ), it's enough to shake my already fragile faith in humanity. I suppose we live in desperate times, but preying on the infirm should warrant some kind of extraordinary punishment. I know that we have supposedly evolved past a simple "eye for an eye" system of justice, but it would be extremely satisfying if the scumbags perpetrating these acts could somehow be given an extremely aggressive form of Multiple Sclerosis. It kills me to watch the nightly news and see a literal parade of the deranged and demented marching past the cameras, walking with ease despite having their hands cuffed behind their backs and hoodies pulled over their heads. I've learned not to expect a whole lot of justice out of the universe, and the notion that life is fair was long ago rendered laughable (even before my diagnosis), but the sight of rapists, murderers, and child molesters sauntering off to jail without so much as a limp calls into question a wide variety of belief systems…

  • The Do You Really Want to Know Department: the Mayo Clinic has developed a test which could indicate how fast a patient who has progressed from RRMS to SPMS will accumulate disability ( click here ). I certainly understand the practicality of possessing this knowledge, as it would allow for planning and preparation, but I'm really not sure I'd want to know. In some cases, ignorance is still bliss. How about you? Would you want to know?

  • The Eye Candy Department: one of the unexpected pleasures I've had in writing this blog is getting to meet (even if only through e-mail) interesting people from all over the world. WK reader Paulien Bats, from Groningen, the Netherlands, is an illustrator with MS who recently created the image below. I really like it, and not only because Albert Einstein is one of my main men. It's copyrighted and all that stuff, so please don't steal it. Thanks, Paulien…

Inside my head it's a mess

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