Comments for CCSVI and the Politics of Medicine at http://www.randi.org/site , comment 1 to 9 out of 9 comments http://www.randi.org/site Sun, 19 May 2013 15:38:03 +0100 FeedCreator 1.7.3 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24932 Considering that through the years of MS research 99% of the subjects of interest in MS MS research which managed to rise from obscurity into the public eye eventually proved upon closer look not to be pertinent, why would anyone expect that the time, effort and funding into pursuing the theory of ccsvi with it in mind that Zamboni's claims of 100% ccsvi association with MS was the only point of interest which brought the theory of ccsvi out of obscurity and that soon proved to only be the product of incompetence or dishonesty. Any kind of reason to pursue theory of ccsvi clinical trials just isn't justifiable. - lyonro Sun, 04 Mar 2012 09:26:27 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24931 *sigh* The pro-CCSVI posters were called into action by a woman named Joan Beal who runs a CCSVI Facebook page: http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297. Her comment criticizing Dr. Novella is rich in hypocrisy considering this woman has NO medical background:"Opinions and blogging are one thing. Research is another." Apparently, she is under the delusion that playing doctor on the Internet is enough to qualify her as one in the real world. Dr. Ashton Embry is NOT a medical doctor. His Ph.D is in Geology. If that qualifies him as a medical expert, then my philosophy professor of a husband should get out of academia and open his own practice. I have MS and I am angry that people like Joan Beal and Ashton Embry are feeding the MS community half-truths and conspiracy theories. It's insult that they think we cannot think for ourselves or they see us as lackeys who jump at their beck and call to attack medical professionals like Dr. Novella, when they provide a balanced view of the research on CCSVI. We are not! If there is truly something to the CCSVI theory, then the science will out. There's no need to drag politicians into it. Science is not a popularity contest! - BluRidge Sun, 04 Mar 2012 07:49:32 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24930 Maybe it's just me, but I would not put my faith in "someone who actually knows what he is talking about" if he publishes only on Facebook. - rosie Sun, 04 Mar 2012 02:57:07 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24929 I was diagnosed with relapsing remitting Multiple Sclerosis nearly eight years ago. Our local MS support group had special talks about CCSVI when it came out. Everyone said they thought it would be the end of MS! I've come to learn that it if it sounds too good to be true, it usually is. I know a person that had CCSVI performed, twice. He claims his health has improved after the procedures. I'm not sure if that is from the procedure, from the placebo effect, or maybe something else. If there is evidence that CCSVI is effective, I would like to see more trials. If all we have is people saying they think it made a difference, then I'm not so sure. Currently my MS has been under control with clinically tested medication from "big pharma" in conjunction with balanced diet and exercise. There are three people in my family with MS. My uncle is my role model for what not to do with MS because he smokes and has a bottle of Mountain Dew and a Snickers bar for breakfast. I'll stick with the things science can show work through evidence. Plus, I enjoy telling people that my medicine is produced from the ovary cells of a Chinese hamster (Rebif). It sure is a good conversation starter. MS is a complicated disease that appears to manifest differently in each person. It is unlikely that CCSVI is a silver bullet for everyone (or maybe even anyone). - Enginerd Sat, 03 Mar 2012 17:43:22 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24928 I think this was a very balanced article. The reality is that human beings frequently don't neatly fit to the text book examples. People want desperately want a cure. I don't possibly imagine what "institutions are threatened" by a potentially effective treatment for a very debilitating disease. Why write about it all? Why are some people so quick to imply ulterior motives to the medical profession? This is exactly what the untested alt med industry shamelessly exploits. Emotion-laden propaganda vs. humbling reviewing the evidence. "We don't know yet" is not exactly the popular answer. It's honest and ethical, though. Remember, you can't learn anything new if you already know everything. Medical science doesn't work like some areas of science. You know, where you start with a conclusion and pay scientists to build a computer model to prove it. Doctors don't write letters to academic journals demanding the public's respect. Dr. Novella isn't going to definitively endorse or refute CCSVI, and label dissenting doctors as evil MS deniers. - laursaurus Sat, 03 Mar 2012 14:11:23 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24927 People with MS are sick of the "politicking" and would like the science to be allowed to come to the forefront. We're promised clinical trials but they keep getting stalled--and I firmly believe they are stalled because the finances of too many institutions are threatened. I was told my MS would never get better, I would only deteriorate further, but I proved them wrong--after I had venous angioplasty for CCSVI! I can now stand steadily, without holding onto anything for support, for the first time in 20 years! Maybe that's insignificant to someone like you but to me it is PRICELESS! - lorimayb Sat, 03 Mar 2012 10:29:37 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24926 How ethical trying an unproven treatment is depends a bit on whether there is a downside. Bone marrow transplants for breast cancer were "experimental" so insurance companies would not pay for them. Patients got up in arms, and politicians intervened and a huge number of these very debilitating and often life shortening procedures were performed. Eventually the science was done the procedure did no good at all. A lot of these political/ethical issues are very well dealt with in Mukherjee’s “the emperor of all maladies” about cancer. - sailor Sat, 03 Mar 2012 10:23:12 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24925 Please read this commentary by someone who actually knows what he is talking about! http://www.facebook.com/notes/ashton-embry/the-big-picture-regarding-the-rejection-of-bill-c-280/311308185597340 - lorimayb Sat, 03 Mar 2012 10:18:14 +0100 http://www.randi.org/site/index.php/swift-blog/1648-ccsvi-and-the-politics-of-medicine.html#comment-24923 Politics of medicine you say, gee thanks, just what everyone calling out for. More cherry picking and politicking. You know, there’s been some very interesting science coming out lately, but it goes against what you believe so best not look at it. 80% eh, that's interesting. Both of my wife's jugulars were 90% blocked, and she had dramatic improvement from her secondary progressive MS. Could that be the placebo effect? Hey, there’s a way to find out, but no, nobody funds the science that will get to the bottom of this in a reasonable amount of time. I made the best decision for my wife that I could based on the available information, and don’t regret it for a second. I’m skeptical that the placebo effect has some supernatural abilities that allow it to override brain damage, but you’re free to believe any bullshit you want. - Morgan Sat, 03 Mar 2012 09:15:24 +0100