2. There are people on this board who are obsessed with this theory for whatever reason. Please proceed with caution. They will try to convince you that the CCSVI theory is gaining momentum but stick CCSVI in your google search engine.
3. Many of us on this site do not believe in this theory. Not saying we are right or wrong, but newbies should know this.
4. Most of the people on this site hope there is something to CCSVI but have serious reservations. Do not believe that because of the number of posts on the CCSVI thread there is a majority consensus.
I think the major reason for the reservation of neurologists and the lack of google-search-results is due to the novelty of this approach.
I think the Bologna conference shows that there is some serious interest in the new CCSVI field - 150 neurologists where in the audience.
From the papers/statements of Bologna I assume that they are seriously trying to establish an interdisciplinary (vascular, neurological, radiological, surgical) network to scientificly further clarify the role of CCSVI in MS.
While I'm with you, that its not the best choice to overhype CCSVI at the current stage, I would argue, that your presumption
They do not believe in this theory because their years of experience and knowledge tells them it is Bolonga, I mean baloney.
is not well-founded.
1. I believe many neuros are not even willing to take the time to seriously evaluate the current state of science/publications for CCSVI in MS.
2. I do think that most neuros dont have sufficient interdisciplinary expert knowledge/experience to assess the validity of the CCSVI approach all by themself.
3. At the current stage I dont see a major contradicting point that would justify calling the CCSVI approach a baloney.
I seem to recall that you are right in to stem cells and your wife is a researcher or something. Fair enough - that's your bag. All I'd say is that I've tried two lots of stem cells which didn't do me much good. But that doesn't mean I'm against stem cells or would influence others not to try.
Hava good day, mate.
I personally believe it’s simply a case of "once bitten twice shy". There have been endless reports of "miracle cures" for this disease and that disease, which have surmounted to nada. I think they are simply being "professional" in their approach of not jumping on the latest band-wagon. They are working on treatments with 70% proven effectiveness, and as far as they can see, CCSVI has 0% proven effectiveness by their standards; ie phase III trials.scorpion wrote:1) Most neuros are not even interested in this theory.
I spoke to people managing MS research here in Australia about CCSVI, and when they realized I was very sober regarding this research, they started to joke about the whole "colostrum driven stem cells" fiasco that recently hit the net, and their phone lines, with me.
Although I hold great beliefs & hopes in the CCSVI possibilities, I can see where scorpion is coming from. He is not trying to deride it, simply acknowledge that there are others on this board that are not 100% convinced, and as such, new visitors to the site should not be "frightened away" by the large number of posts on CCSVI, or be under the impression EVERYONE on this board holds this opinion.
If you do not like what I post simply do not read it. I swear I will not be offended!!!! This is an open forum and anyone can say what is on their mind as long as it is done so in a respectful manner. Although I have serious doubts about CCSVI I have never asked anyone not to post their thoughts or feelings relating to it and I do no expect to be asked to quiet my voice. I promise I will not inundate this forum with my opionion on CCSVI but when I feel that people need to hear another voice I will start my 6/7 thread.. I honestly have a great deal of respect for the members who are passionate about CCSVI and for those sharing their after surgery experiences. People who come to us for answers and support DESERVE to hear not just one opinion on a subject but many so that they can make an informed choice.
Do you believe in LDN? Antibiotics? stem Cells? I don't see you constantly writing discouraging posts about all these things in the general section?!!!
I recently had a short conversation with the head of a hospital's MS center regarding CCSVI (he had read the papers I sent). He didn't immediately dismiss it (though he did bring up the "which came first" issue). When I pressed him on some sort of research project, possibly involving the hospital's vascular department, he responded positively, then asked me "who's going to pay for it."
Also, a few days ago I was on the phone to NIH. As I was wrapping up the call, I asked about CCSVI, and the person said they were aware of it, and had been having discussions about it. When I mentioned that I would readily volunteer for any study they might do, the woman told me: "Don't worry you won't miss anything. Even if we decided tomorrow to do a study, it would take a year before it could be set up."
I see many posts attributing the reluctance of neurologists to embrace this theory to their ties to drug companies. I am no big defender of neurologists in general (I have seen some bad ones), and some doctors do have improper ties to drug companies. But I don't think it is fair to impugn all doctors this way. I think it is unrealistic to expect researchers to drop their own studies, which may have been going on for years, to pursue a new theory with limited documentation. And, taking a look at the dislcosures of some of the neurologists who attended the Bologna conference, they are not completely without ties to drug companies.
Sorry for the length of the editorial. Now back to your regularly scheduled program....
I am sorry but I am grateful that Scorpion is the first who brought his oppinion that is not as conventional as on CCSVI threads.
As far as I understand his posts, he doesn´t discourage people to go to that threads, he just says: "Think twice."
And he doesn´t have to write warnings about LDN, antibiotics or stem cells threads, I think. People there are not as fanatic as the others.
Reading their posts I have a feeling that they do not have anybody who would be cured by their miracle treatment but they already know that all the docs who don´t repeat Dake´s, Zamboni´s and Simka´s words are absolutely out.
I personally don´t like when someone has a black and white glases...
I am sorry.
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