Another Bits and Pieces (Mostly CCSVI Related)

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• Finally, a major US news outlet runs a feature piece on CCSVI. Tuesday's New York Times carries a very balanced article on Dr. Zamboni's theory and the impact it's having on the MS universe, as the lead story of the paper's Health section (click here for article). While giving equal coverage to the pros and cons of the theory, the article profiles a patient who appears to have clearly benefited from having the stenosis in her veins addressed using the liberation procedure. The article does stress that further research needs to be done, and gives voice to both the opponents and proponents of CCSVI. The patient featured needed multiple venoplasties performed because of repeated restenosis, an all too common problem for those undergoing the liberation procedure. This article should open the floodgates of coverage in the US media, which has been almost eerily silent on CCSVI until now. I expect that telephones will be exploding in MS neurologists' offices around the country for the rest of the week...

• The Buffalo Neuroimaging Analysis Center (BNAC) is starting the first official blinded treatment study of the liberation procedure this week (click here for info). These are the same good folks who did the CCSVI imaging study released last February, which found that about 60% of MS patients exhibit the hallmark signs of CCSVI, vs. about 25% of healthy subjects that also showed signs of narrowed veins (click here for info). This treatment trial consists of two phases. The first phase includes 10 patients who will undergo the liberation procedure using balloon angioplasty only, not stents, who will then be followed for 30 days to track the efficacy and safety of the treatment. If all goes according to plan, another 20 patients will then be treated, 10 of those with a "sham" treatment, to serve as a control group. The outcomes of the two groups of 10 patients will be carefully tracked and compared to ascertain the impact of the liberation procedure on patients with early-stage MS. Though this trial is relatively small, let's not forget that a journey of a thousand miles begins with single step...

• Speaking of the BNAC, their program of fundraising CCSVI MStery parties is in full swing, with parties planned and being held around the country. These shindigs are a terrific way of donating to CCSVI research while having a great time doing so. This past Sunday night, a party was held at Seattle restaurant The Pink Door, which raised over $13,000 for the BNAC's CCSVI research. The Wheelchair Kamikaze himself (that would be me) made a virtual appearance at the party via Skype, introducing the BNAC's Director, Dr. Robert Zivadinov (who was also a virtual attendee), to the crowd. I was even accorded the highest honor a man can be bestowed, as Jackie Roberts, the owner of The Pink Door, named a drink after my Internet alter ego. The "Wheelchair Kamikaze" consists of vodka, triple sec, lime juice, and blue curacao. After drinking three or four of those, you're guaranteed to have as much trouble walking as I do... (click here for info on how to hold or attend a CCSVI MStery party-even a virtual one!)

• Just a reminder to sign up for and watch the latest NMSS live webcast, "What's New in MS Research and Treatment", which will be held on Wednesday, June 30, from 1 PM to 2:30 PM ET (click here to sign up for webcast). Topics covered will include the new oral MS drug therapies, nervous system regeneration and repair, and (drumroll please) an international overview of CCSVI research. These webcasts are always filled with lots of good information, and, being live, who knows what kind of shenanigans might ensue. I sure hope one of the neurologists isn't caught lip syncing...

• In keeping with the marijuana theme set by previous "Bits and Pieces" posts, Britain has okayed the use of the world's first cannabis-based medicine, called Sativex (click here for info). The drug comes in the form of a spray, and is taken via a spritz into the mouth of a patient. Sativex has been found to effectively reduce spasticity in MS patients, and has been available in Canada for several years. Don't expect to see it available in the US anytime soon, though, because of our asinine laws which so demonize marijuana that it is prohibited from even being researched for possible medicinal uses. And do you know why we have such idiotic laws? To protect our youth from the depravity of illicit drug use, you say? Wrong. Anti-Marijuana legislation was originally enacted to protect the profits of companies such as DuPont and the Hearst Corp., with a liberal dose of racism thrown in for good measure (click here for info). Thankfully, several states have taken things into their own hands and okayed medical marijuana, but the vast majority of chronically ill US citizens seeking relief with this natural remedy are considered criminals...

• Here's a rare bit of good news for MS patients with progressive disease: a clinical study of a treatment protocol for these notoriously difficult to treat patients shows very encouraging results. In a study published in this month's Journal of Neurology, The International Multiple Sclerosis Research Center of New York reports that a retrospective analysis of progressive MS patients that had undergone a series of eight intrathecal (spinal) injections of methotrexate revealed that 89% of a SPMS patients receiving the treatment had stable or improved disability scores one year following treatment, as did 82% of primary progressive patients treated (click here for more info). The patients were considered for this treatment if they were unresponsive or intolerant of approved FDA therapies. Methotrexate is an immunosuppressive drug that is commonly used to treat rheumatoid arthritis and psoriasis. Full disclosure: the MS specialist conducting this study is Dr. Saud Sadiq, my personal neurologist. I was given intrathecal methotrexate treatments, but saw no benefit. Please keep in mind, though, that mine is an extremely unusual case of MS, so unusual that my diagnosis is open to question. When Dr. Sadiq sees me rolling down the hall of his clinic, he does a heroic job of suppressing the urge to run the other way screaming...

That's it for today, folks. I hope readers are finding these Bits and Pieces posts to be interesting and of value. I'm all about value...

Important New Canadian TV Segment on CCSVI

Image by Kevo89 via Flickr

CTV, the Canadian television network, has produced a very significant follow-up segment (click here) to their original piece on CCSVI (click here), which aired back in November. The original piece was largely responsible for the frenzy over CCSVI that has gripped the MS population, and this new piece is a worthy successor.

This well produced 22 minute segment focuses on the battle between MS patients demanding action be taken regarding CCSVI, and the mainstream medical establishment’s resistance to taking such action. Featured in the piece are profiles of patients who have undergone the Liberation Procedure to varying degrees of benefit, and interviews with some of the vascular physicians who have started to recognize the possible importance of treating MS patients who have abnormal venous anatomy.

Dr. Mark Freedman, one of Canada's foremost MS neurologists, is on hand to offer the arguments against taking aggressive action to investigate CCSVI, and although the points he makes are theoretically sound, in the face of the mounting (albeit so far mostly anecdotal) evidence, seem hopelessly behind the curve. Although I don't think he comes off very well here, I would like to point out that Dr. Freedman has previously done some groundbreaking MS research, including using stem cells to treat MS, so his strident resistance to the idea of CCSVI is somewhat puzzling, and certainly distressing. If doctors of his caliber were to get behind research into CCSVI, the road to authoritative answers would be that much shorter.

Clearly, the vast implications that CCSVI has on the hundreds of thousands of patients suffering the quite literally crippling effects of MS demand that the scientific community take immediate notice and endeavor with much haste to either prove or disprove the theory. Given that the CCSVI hypothesis itself is fairly straightforward (although with further study I expect it will probably prove to have its complications), with proper funding it shouldn't be very difficult to launch definitive studies quickly and with scientific integrity.

This new segment also introduces us to Austrian physician Dr. Franz Schelling, who first picked up on the link between vascular abnormalities and MS in 1980, and has spent the better part of the last 30 years trying in vain to get the medical world to listen. He learned of Dr. Zamboni's initial work on CCSVI through the Internet, and initially contacted him with information gleaned from Google.

The CCSVI story, however it turns out, demonstrates both the power of the Internet, and the massive importance of well-informed patients steadfastly advocating for themselves and their fellow MSers.

Power to the people, right on...

I'd like to remind everybody watching this piece that despite the enthusiasm for CCSVI on the part of its producers that it clearly reflects, an enthusiasm shared by a growing number of patients (myself included), CCSVI still resides in the realm of theory rather than fact, so we must try to temper our fervent hopes with at least a modicum of healthy skepticism.

That said, I sure wish my Liberation Procedure had been successful in opening my blocked jugular. Oh well, if at first you don't succeed...