In my meanderings around the MS Internet, poking my nose into both highly trafficked spots and those more obscure, I occasionally find references to individual Wheelchair Kamikaze posts or to the blog in general. Usually these mentions are quite complementary, and upon reading them I sit before my screen blushing like a young man who just vomited at his boss’s table during the office Christmas party (um, not that I would have any firsthand knowledge of what that would feel like… and if Mr. Riley is reading this, I still insist it was the Cornish hens and not the Bombay Sapphire martinis).
Over the past week or so, though, I noticed comments from a couple of people who weren’t all that thrilled with me. Not that this is necessarily a bad thing, because I like to think that I’m very open to healthy criticism, and besides, it was interesting to see just how many times an iPad can bounce off the floor before becoming completely nonfunctional.
One critic said that I was very “pro-chemotherapy”, and the other labeled me as part of the “CCSVI Mafia”. I find these characterizations somewhat puzzling, since they are kind of contradictory, and I’m not sure either is accurate. I often come down hard on some of the unsavory business practices of the pharmaceutical companies, but I think I give their products a fair shake (I guess too fair, in the eyes of some), and when I write about CCSVI or other alternative treatments I always try to stress that one must be careful not to let hope eclipse reason. I suppose the fact that people can read my stuff and come away with such divergent opinions might mean I’m actually doing a pretty good job; on the other hand, it could also mean I’m totally incoherent. Birdseed armpits genuflecting knuckle fish, Tennessee Titans!
For the record, I think it's silly to be "pro" or "anti-" any particular form or category of treatment. Each MS patient is different, and each must weigh the risks and benefits of any treatment they are considering based on their own individual circumstances. Some currently marketed pharmaceutical MS drugs might often fail such an analysis, but other would certainly be in play. Same thing holds true for many unconventional therapies. Education and an open mind are a patient's best weapons against this disease, and will continue to be regardless of the many twists and turns the MS story takes as it continues to unfold.
Okay then, enough of my belly gazing, here’s another collection of mostly MS related items that have tickled my fancy or raised my hackles over the last month or so. I don’t think any of them tickled my hackles or raised my fancy, as to do so they’d at least have to take me out for dinner and a movie first…
♦ First up, an update on the fundraising campaign for the Tisch MS Center’s FDA approved MS stem cell trial, which I wrote about extensively in my last post (click here): As I write this, the Center’s Indiegogo campaign is approaching $200,000 raised, two thirds of the way to their target of $300,000. As I detailed last week, this stem cell trial could play a pivotal role in one of the most promising new directions in multiple sclerosis research, and contains within it the hope that someday in the not-too-distant future we may be able to reverse the damage done by the disease. So, a big thank you to all WK readers who have already contributed, and a big “please help” to those who haven’t yet done so. Every little bit helps, and a contribution of even a dollar or two gets the trial that much closer to swinging into high gear. Contributing is easy, just go to the Tisch Center’s Indiegogo page (click here) and click the “Contribute Now” button. Thank you thank you thank you.
♦ This week’s big MS headlines involve a study which found that a drug commonly used to control cholesterol might dramatically slow the progression of multiple sclerosis in patients with Secondary Progressive disease (click here). The phase 2 study, called MS-STAT, demonstrated that the statin drug simvastatin (brand name Zocor), when given in high doses, slowed brain atrophy by as much as 43% when compared to a placebo. Brain atrophy (shrinkage) is increasingly being recognized as an important factor in the MS disease process, and may be more indicative of disability and disease progression then other more commonly used indicators such as brain and spinal cord lesions.
The MS-STAT study is intriguing on several levels. The fact that a class of drugs as commonly used as the statins may be effective in treating progressive MS is both intriguing and problematic. Intriguing because the drugs are already in widespread use and have been shown to be safe over the several decades since their introduction. Therein, though, is also the problem. Because these are old drugs, their patents have expired, meaning they are available as cheap generics. Therefore, there’s not much profit to be made from them, and thus there is very little incentive for pharmaceutical companies to pony up the many millions of dollars it would cost to put these drugs through the final phase 3 studies that would be necessary to get them approved for use in MS patients. This isn’t really the fault of the pharmaceutical companies, per se, as they are for-profit operations in business to make money. Rather, this shines a bright spotlight on our very broken medical research model, which relies far too heavily on Big Pharma funding to drive research forward.
It’s conceivable that neurologists could prescribe simvastatin to MS patients on an “off label” basis, since the drug has already been approved for use in humans as a cholesterol buster. Problematically, though, the doses used in the MS study were quite high, and statin drugs do have some known side effects, including muscle weakness, which certainly wouldn’t be a good thing for MS folks. The MS-STAT trial was a relatively small phase 2 study, and its results beg to be replicated in a larger phase 3 study, especially since previous trials testing the use of statin drugs as an add-on therapy for RRMS patients did not demonstrate effectiveness (click here), and some studies showed that statin drugs may inhibit the remyelination process (click here). Let’s hope that somehow phase 3 studies can be funded, as progressive MS patients are in desperate need of effective treatments.
♦ One of my favorite theories about the cause of MS involves human endogenous retroviruses, or HERVs, which I wrote about in detail last year (click here). The theory is once again making headlines (click here). HERVs are ancient bits of retroviruses (viruses similar to HIV) that have been incorporated into the human genome throughout the course of millions of years of evolution. Hard as it may be to believe, studies have found that about 8% of human DNA is actually made up of these ancient viruses. Scientists had long thought that this ancient viral material was simply leftover inactive garbage, but recently researchers have found that, under certain conditions, these ancient viruses can be switched “on” and cause our own cells to express proteins that could lead to all kinds of problems in the human body. HERVs have been associated with autoimmune diseases, cancers, and even some mental illnesses.
There are currently two trials underway attempting to use drugs to target HERVs in MS patients. One study, being conducted in London, is using an off-the-shelf HIV medication called Issentris in an attempt to treat MS. This study has its genesis in the observations of an Australian virologist, Dr. Julian Gold, who treated a patient unlucky enough to have both MS and HIV. After the patient started taking powerful anti-HIV drugs, Dr. Gold observed that the patient's MS symptoms gradually improved, and after two years the patient was no longer experiencing MS relapses. Subsequent studies have indicated that the risk of MS is markedly lower in HIV patients undergoing anti-HIV therapy than that of the general population. Interesting stuff, to say the least…
♦ Two new studies point to a hormonal component in the MS disease process (click here). One study found that people who were obese at age 20 had a 50% higher chance of developing MS than their thinner counterparts. Obese people also generally have higher levels of lectin, a hormone that controls weight, appetite, and immune response. The second study found that women who took hormonal contraceptive pills had a 35% higher rate of developing MS than women using other types of contraception or no contraception at all. Most of the women taking hormonal contraceptives were on pills that combined estrogen and progestin. Researchers suggested that this finding may explain the rising rate of MS in the female population.
It’s long been thought that hormones play some role in MS. Pregnant women with MS usually see their disease go into remission during their pregnancies, and male MS patients often exhibit low testosterone levels. On a personal note, my entire endocrine system is completely out of whack, with many of my hormone levels all over the place. I’m the only male who suffers from PMS (in my case, the initials stand for Phooey on Marc Stecker).
♦ Do you have a physician that deserves a great big “thank you”? Do you want the chance to win a $10 iTunes gift card? Well, if the answers to those questions are yes, you’re in luck, because it just so happens that March 30 is National Doctors Day and the fine people at Sermo.com are asking that patients contribute a message via the Sermo website thanking their favorite doctors (click here). Sermo is a social networking site for doctors, kind of a Facebook for physicians. The thank you’s can be submitted in written or video form, and the 50 best will win a $10 iTunes gift card. Written comments can simply be left on the Sermo blog (click here). Video entries should be uploaded to YouTube and include “DocsDay” in the title. The video link should then be tweeted to @sermo with the hashtag #DocsDay.
I know that many patients have a love/hate (or even a hate/hate) relationship with some of their doctors, and I also know that some physicians deserve not a thank you but a whack in the head with a horse manure filled sock. But there are many gems amongst the folks who have the initials M.D. after their names, and those paragons of their profession certainly deserve a public shout out. As of this writing, there were less than a dozen written thank you’s on the Sermo.com blog and just a few videos on YouTube with only three days to go before March 30, so your chances of winning a gift card are probably pretty good if you submit a heartfelt message before the deadline.
On the video “thank you” side of things, this lady decided to extol the virtues of her MS neuro in song, and all I can say is “wow!”:
♦ Here’s an MS fundraising/awareness project that’s right up my alley. Seeing MS is a project done in conjunction with the Australian MS Society that has matched professional photographers with MS patients to attempt to produce photographic representations of “invisible” MS symptoms (click here). The photos thus far produced are remarkable, but to me the best part of the project is a photo app that MS patients (or anybody else) can download for their iPhone or android devices, which has unique filters that can be used to create photos that emulate nine of the more common symptoms of MS.
Amateur MS phone photographers can shoot pictures using the app, apply the filter of their choice, and then upload their photo to the Seeing MS website, where it will be displayed for all to see. The best images will be chosen to be part of an exhibition and auction to be held at the end of April. So download the app (click here) and start clicking away. I’ve already uploaded a photo or two, and would love to see some of my WK brethren join me in displaying their work on the Seeing MS website.
♦ I’ll sign off with the following video, which explores a topic I'm very much familiar with, the enigmatic hour of 4 AM. I am by nature a nocturnal creature, always have been. Even as an infant, my mother tells me, I was prone to stay up very late and then sleep well into the morning. When the realities of adult life forced me to conform to the typical 9-to-5 hours of the workaday world, I found the schedule to be quite torturous. Since "retiring" due to my illness, I've reverted back to my natural inclinations. While most people are long asleep by 4 AM, and some poor souls are just waking up, these days I find that hour to quite often be my bedtime. In the below clip, a part of the famous TED talk series, the poet and storyteller Rives reveals his humorous discovery of a 4 AM conspiracy, the hour encoded into the very fabric of our culture as a sort of touchstone for things mysterious and gloomy. So, are my sleep habits merely a coincidence, or have I tapped into some kind of cultural zeitgeist, my late-night predilections a reflection of some universal subconscious? Well, I don't believe there is any such thing as coincidence, but if my quirks are symbolic of a hidden societal phenomena, I fear much wackiness may ensue in our collective future…
RIP Brett Weber, gone but never forgotten. Thanks for the smiles.