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.
Interesting, Marc. As I read this at 3:30 am. Thank You. :debe:ReplyDelete
Been getting quite a few messages from other creatures of the night. We are hiding in plain sight…Delete
I always learn something new when I read one of your posts, Marc. Thank you!ReplyDelete
best wishes, Manju
How nice to hear from you, Manju. I hope that life is treating you kindly. Very glad that you find my posts of value, I've always held your opinion in the utmost regard. Thanks for commenting…Delete
I have been horrified by the recent news regarding statins and MS patients. I have done quite a bit of research into this over the last couple of years, as has my naturopath, and advising the use of statins for anyone – – especially MS patients – – is strange indeed, considering that the preponderance of findings regarding statins points to negative affects on brains, rather than positive.ReplyDelete
Here is just one of the many bits of information regarding this:http://www.fda.gov/forconsumers/consumerupdates/ucm293330.htm
In addition, Dr. David Perlmutter, noted neurologist, addresses this topic quite thoroughly in his book "Grain Brain" – – not so much statins in and of themselves, but the issue of cholesterol, brain health, and all things related.(I highly recommend his book, as well as his 90 minute lecture available on PBS stations – – the lecture is entitled "Brain Change")
(I happen to develop a particular interest in this topic when my otherwise 100% normal 68-year-old sister-in-law developed dementia within months of starting a Lipitor prescription, given to her by her doctor because the doctor thought that her cholesterol level was a bit high.
The dementia morphed into full-blown Alzheimer's within 12 months post-prescription, and even after her family insisted that she be removed from the drug, the damage was done. She was dead by age 71, having lived the last eight months of her "life" as a blob in a wheelchair. This was a woman who prior to taking a Statin drug had been perfectly healthy and active – – mentally and physically.
Wow, what a terrible story about your sister-in-law. I recently spoke to a neurologist about the statin study, and he was more than a bit skeptical, especially given the fact that previous studies didn't find much benefit in regards to MS.Delete
I think the more important take away from this may be that there could be older compounds out there that might be of benefit to MS patients, which will unfortunately go untested because of their lack of profit potential. With the MS drug market becoming saturated, we could be facing a real crisis in MS research, as the pharmaceutical companies start directing their funds into areas of research with greater moneymaking prospects. As I said in my post, this isn't really the fault of the drug companies, but rather a symptom of our very dysfunctional medical research model that has come to rely much too heavily on pharmaceutical company funding.
Thanks for your comments, they're very much appreciated.
Ha! Thanks for sharing my ridiculous Thank You video! I am an avid reader of your blog and was quite honored to see my video here! :-)ReplyDelete
Hello International Ann. I was quite tickled by your video, and can only imagine it's not the work of an amateur. Lovely voice, and very clever lyrics. I'm sure your neuro will be quite appreciative, and I'm happy that you found yourself a good one. Lord knows there are plenty of them out there that might be described with less complimentary adjectives… Thanks for being an avid reader, and feel free to leave more comments, even if they don't take the form of song…Delete
:D Thanks Marc. My dogs got me up at 4am this morning so I got up & read my emails - there you are LOL. Thank you my comrade.ReplyDelete
btw ;the TED talk reminded me a few years ago I did a painting workshop with a very well known Australian artist who kept referring to the artist Jack O'Metty . I am proud of my art history knowledge - I searched my brain's data bank & found no mention of this obviously Irish artist, me thinking he must have been a contemporary of Sean Scully. Alas, no, he was referring to Giacometti, who shall now be the thing I think of at 4am when I wake, be it dogs or possums or ghosts.
Well, there are certainly worse things you can think of at 4 AM than Giacometti, and worse things that could wake you up than dogs. Can't say I'm all that fond of possums, though, but the occasional ghost doesn't phase me.Delete
When I lived in Florida I had a ghost in my apartment who used to freak out overnight guests with his bumps in the night. For some reason I found his presence, which was confirmed visually by quite a few people, to be somehow comforting. Gave me someone to talk to when I was alone. I still do a fair bit of talking when I'm alone, but have no ghost to listen to my ramblings…
'Not sure how I missed THIS TED! -- I have a very long relationship with 4 AM to the point that I finally decided I would adopt the concept of "Second Sleep" because then, at least, I would get something done while I was up! -- Now I will think about this talk and laugh about the observations and strange "coincidences" and how much company I actually have at that auspicious hour each morning!ReplyDelete
I'm thinking we should start some kind of 4 AM club. I do like the idea of second sleep, but these days mine usually takes place between the hours of 5 PM and 8 PM, and really impedes my productivity. MS is known to screw with sleep patterns, but what comes first, the chicken or the egg?…Delete
I tried statins about ten years ago, they didn't work any magic on me. 'Course, everyone's different. Here's hoping someone else has much better luck! : )ReplyDelete
Yes, the first buzz about statins in MS did happen around 10 years ago. I was surprised to find out that they were still studying their use in the disease, since earlier trials didn't show any benefit. I suppose the allure of a well used drug that's readily available intrigues researchers, but I do wish they'd spend more time figuring out what causes the damned disease rather than ways to ameliorate its effects. Can't have a cure without a cause…Delete
Can I ask if you were RRMS or SPMS/PPMS when tried statins. Was it simvastatin and what was your dose? The trials use 80mg per day.
I thought of you today when I saw a segment on CBS This Morning about a photographer named Vivian Maier and a documentary coming out about her.
Thought you might find this interesting since you love taking photos.
Here's a couple links:
Thanks for the links, Dee. I first learned of Vivian Maier about a year ago, and instantly fell enamored of her work. The discovery of her photographs is a fascinating story, and I can't wait to see the film. Just found out that it's available "on demand" on my local cable network (Time Warner cable), and I think it's available on many cable systems. Going to watch it this weekend…Delete
I've been late in commenting, not that you're counting time, but I did want you to know that I contributed, just under my married name. As always, thanks for your great synopses of things relevant to MS life.ReplyDelete
Thanks so much for your contribution Judy. They are still about $80,000 short with about two weeks to go, but hopefully there will be a late surge to put them over the top…Delete
I have yet to figure out how to register my laptop with an email account to let me email you. I will post this way for now. I have been recently diagnosed with MS (3 months ago). I was told "we are 90% sure you have MS." That has pissed me off since 2 months prior to that I was told I had a brain tumor and would be dead by now. I have gained 25 pounds and lost hair and some hand function over the past few months. I have lost faith in the medical community. My mantra has pretty much become "everyone can suck it." But I want you to know, your blog has been the best resource I have found yet. I am also a New York City resident. I have no idea what is coming. I feel like I get the pity look on doctor's faces when I ask a question (but considering I was 60% dead in November and 90% sure MS in March, again, everyone can suck it). I am trying hard to not seem weak to my job and am not telling my business because of it. But your website makes me feel less crazy and alone. Thank you.ReplyDelete
Hi, I'm glad that my blog has helped you deal with what sounds like a very upsetting situation, to say the least. My best advice to you would be to see an MS specialist ASAP, if you haven't already. Since you are in NYC, there are plenty available to you, but I'm partial to the doctors at the Tisch Center. Regardless of my own opinions, though, the MS centers at Cornell Presbyterian, Mount Sinai, NYU, and Columbia are all good. I probably left a couple out, as well.Delete
A good MS neurologist should not leave you in limbo for all that long. Certainly, conducting the right tests should be able to differentiate between a tumor and MS, even though MS is a notoriously hard disease to diagnose. Don't waste your time going to general neurologists at this point. You need answers, and only a doctor intimately aware of the intricacies of MS will be able to give them to you in a timely fashion.
Wishing you the best of luck, and feel free to email me at WheelchairKamikaze@Gmail.com…
Thank you very much for all you do. It does not go unnoticed.ReplyDelete
I have been diagnosed with MS for 15 years, and by the grace of God I have been doing relatively well. Of course, there is a small part of me waiting for that next shoe to drop (no pun intended).
Just wanted to say that because of your visibility, my family has just made a donation to the Tisch Stem Cell research group.
Never stop moving forward and may God be with you. Mike
Thanks so much for your very generous words, and an exceptionally huge thanks for contributing to the Tisch MS centers stem cell research. Hopefully their efforts will pay off for all of us sooner rather than later.Delete
Glad to hear that you are doing relatively well. Keep on keeping on…