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Well, it's time for another edition of Bits and Pieces, my semi regular compilation of various items, mostly related to MS, which have recently caught my attention. First though, a quick note about some housekeeping I was forced to do here on Wheelchair Kamikaze.
Due to an onslaught of spam being left in the comments section of older posts, I've been forced to institute the "post moderation" option made available by Blogger, the host of this site. In plain English, this means that all comments left on older posts will have to get my okay before they are officially posted to the site. I resisted this option for a long time, primarily because I don't believe in censoring anybody's opinions, but also because I'm too damn lazy to have to okay every comment left on older posts. Unfortunately, the spamming efforts of one organization hawking CCSVI testing and treatment have forced my hand. This organization, The CCSVI Clinic (click here), was recently cited as being a something of a scam in the Canadian press (click here).
UPDATE: I've been in contact with the CCSVI Clinic, and I've been assured that the spamming is not coming from anywhere within their organization. They are actively trying to find the source of this electronic harassment, and have recently been the victims of vandalism, slander, and hacking. Hopefully they will be able to resolve these issues quickly, and to their credit, the individuals I've spoken at the organization with have been forthright and genuinely helpful.
And now, on to our smorgasbord of Wheelchair Kamikaze delicacies…
· On 01/11/11, the NMSS held a one-hour webcast entitled "Repairing the Nervous System in MS: Progress and Next Steps". The webcast featured four experts in the field, and it is well worth watching the archived version, or reading the transcript, both of which are available on the NMSS website (click here). Much stimulating information was featured, including info on evolving strategies for stimulating the body's own resident stem cells to repair damaged nervous system tissue, as well as the use of adult and embryonic stem cells to affect these same kind of repairs. Also discussed were the efforts currently underway of developing drugs that will protect nerve cells from the damage that the MS disease process inflicts, and perhaps stimulate myelin repair. One such drug currently under development by Biogen blocks the protein Lingo-1 (click here), which inhibits the body's production of myelin. Phase 1 human trials of this drug are currently underway. Even if radical new approaches prove to be able to stop the progression of MS (say, like, CCSVI) the repair and regeneration of the nervous system will still be of primary importance, as stopping the progression of the disease alone will not restore function to patients with long-term nervous system damage.
Okay, that's the good news. The bad news is that the best case scenario for all of these wondrous developments is that they are at least 5 to 10 years away from being available to the general patient population, far too long for most of us to wait. Not only do trials and testing take time, but getting proper funding for large-scale trials is a daunting task. There is a gaping chasm in our medical research model between developing innovative treatments in the lab and bringing them to market, and this fault is so endemic to our system that it's often referred to as "the valley of death" by medical researchers. Organizations such as the Myelin Repair Foundation (click here) are feverishly trying to tackle this tremendous problem, but the simple fact is that the current research model is horrifyingly dysfunctional, which I wrote about extensively in a previous post (click here).
· It's long been known that MS attacks women in greater numbers than men. Actually, this is only true of Relapsing Remitting Multiple Sclerosis, as Primary Progressive MS attacks men and women in equal numbers. Regardless, new research into the genetics of the disease reveal that women are more likely than men to carry a gene variant associated with Multiple Sclerosis (click here). The study finds that women are 1.41 times more likely to have a MS related gene mutation in an area of the human genetic code linked to MS. Additional information (click here) showed that women are also more likely to pass the "MS gene" onto their female children, which further explains the female: male difference seen in the disease. It's thought that this gene variant is not naturally occurring, and rather comes about through an interaction with environmental factors. This change in genetic structure due to interaction with the environment is a relatively new discovery, and is referred to as epigenetics. Some of the environmental factors that might contribute to an MS gene mutation could be stress, diet, smoking, vitamin D exposure, or exposure to toxins or infectious agents. Interesting stuff…
· In this curious bit of news, a 53-year-old man admitted to dressing up as a Canadian Mountie as part of a sexual role-playing game (click here). Normally, although well worth reading, a news item such as this wouldn't warrant inclusion in Bits and Pieces, except that the first line of the article notes that the man is a Multiple Sclerosis sufferer. This isn't mentioned anywhere else in the piece, and I have no idea how it relates to this gentleman's predilection for donning the uniform of a Canadian law enforcement officer in an attempt to pick up men. He was caught in uniform three times, twice after taking his Mountie dressed self to police stations, on one occasion to drop off a box of doughnuts. Our MS stricken mock Mountie now faces the possibility of six months in prison. So, if there is a lesson to be learned here, it is that if by chance you find yourself strangely drawn to dressing like a character in Bullwinkle for the purposes of sexual satisfaction, don't use your MS as an excuse. It won't fly, at least not in Canada.
· In another odd bit of MS related news, an MS riddled human brain is being featured in an exhibit at a London art gallery (click here). A British member of Parliament was quoted as saying, "this is a disrespectful way to treat the human body and is unacceptable.” Many others simply commented, "yuck!" Personally, although I'm no art critic, I find it hard to understand how the brain of an MS patient could be considered a work of art, unless of course the lesions on that brain formed a portrait of Elvis Presley, in which case I'd want to buy it and keep it permanently displayed our dining room table. I'm pretty sure that Karen wouldn't let me, though…
· On a more serious note, a batch of alcohol pads possibly contaminated by bacteria was included in kits distributed to patients using the MS drug Copaxone (click here). If you are on Copaxone, or any injectable drug for that matter, please check to see that your alcohol pads were not manufactured by a company called Triad, or use any of these names on their packaging: Cardinal Health, PSS Select, VersaPro, Boca/ Ultilet, Moore Medical, Walgreens, CVS, or Conzellin.
· As many of you know, I'm an avid amateur photographer, and shoot with a camera mounted to the arm of my wheelchair (please see my photo gallery on the left column of this blog). Here's a very cool video made up of over 30,000 individual photos, shot with a technique called tilt shift photography, which involves the use of special lenses. The effect of this technique makes every day scenes look like they are parts of miniature dioramas, and this video of a day in the life of New York City is, to me at least, is the very definition of "eye candy". Thanks to my buddy Weeble for sending me this video…
Love, love, love your photography. Thank you for sharing.ReplyDelete
Marc, it was a very interesting presentation by the researchers on ms, but it was no mention of what THE problem was! If it now is an inflammation on the nerve system, how does that inflammation occur?ReplyDelete
Isn’t the CCSVI a theory on the issue how the inflammation starts?
I am encouraged by the seemingly unrelenting focus on the cause of MS. What I hope more attention is given to is the connection of hormones to the treatment of the disease.ReplyDelete
My neurologist suggested I "stop" my cycle with Depo Provera because my MS symptoms are horrible right before my period. But after reading up on the side effects, I'm not so sure this is the direction I want to go. I know we have to be our own advocates in this struggle, but I sure would like ONE doctor to figure some of this out for me!
I'm on the verge of ranting. Sorry. I'm approaching "the valley of death" and I'm not feeling very patient!!
Betty-thank you so much for your compliments on my photography. Flattery will get you everywhere. Should have some more photos to post sometime soon…ReplyDelete
Lennart-unfortunately, the roots of THE problem are currently unknown. While inflammation in the nervous system does indeed play a role in the disease process, there is mounting evidence that CNS damage is occurring even before inflammation takes hold. And yes, CCSVI is one explanation as to the genesis of the MS disease process.
Anonymous-there certainly does seem to be a link between hormonal activity and multiple sclerosis. Whether this relationship is cause or effect is unknown. It is generally acknowledged that pregnant women see a reduction in relapses and MS symptoms, and many men with the disease suffer from low testosterone levels. MSers are also very inclined to have thyroid problems. Just another of the many mysteries about the disease…
Hey, I'm gushing that you posted that Sandpit video.ReplyDelete
Shame on the spammers, whoever they are.
I just looked through your photos again and I have to say that shot of the little terrier with the big stick really made me smile. Looking forward to more photos.
Wow - I'm loving the Sandpit video. Good find Weebs! It made me very homesick for NYC. The effects of the water and evening traffic flow was very cool. What patience to take 30,000 stills and edit them into this. Thanks so much for posting it.ReplyDelete