You wouldn't believe the fever on MS websites and discussion boards about the new non-drug treatment called CCSVI. Check it out if you're planning a long term hold on BIIB. Unfortunately its MS treatments have limited effectiveness and significant side effects so if phase II trials for CCSVI are successful I guarantee there will be a stampede for it.
I should have been more clear. When I typed, 'be afraid' I meant that to be directed to the naysayers. This is real. It is safe. It works. The "industry" of multiple sclerosis should "be afraid".
You are wrong. Holly died on the way home of a hemmorhagic stroke, not complications from the surgery. I've talked with her family; you're flat out wrong on that one. The heart thing? not so much, that did indeed happen as I was with that fellow the day before this happened. BUT he received stents. Simka and all the others that are doing this right now are using angioplasty, no stent to migrate to the heart.
We'll see what we'll see, but this can't be blown out of the water with stuff like that. Hell, 7 people died from Tysabri and here you are using the same criteria to pillory one procedure and praise another. Doesn't make sense does it?
Biogen is not reporting PML cases honestly. There are discrepancies all over their website. They even state two very different things on the same page! On front and center, and another story in fine print, because they are required to.
I dont know about your background. I am assuming that you are an investor while responding ...
Biogen has had a very dubious history. I have no doubt in mind that they have not disclosed PML cases honestly.
Thats point number 1
Point number 2 - anyone associated with pharma that deals with MS medicine will know how CCSVI is spreading like a wildfire. So in the best interests of the shareholders, biogen should have informed its shareholders that they indeed see some risk. They can always say that CCSVI does not hold water and blow it away. I have not seen biogen doing that. Are we to assume that biogen did not know about CCSVI. We have MS patients who have spoken to Biogen team that connects with patients who are on Tsyabri. So there is no way that they did not know about it.
There is a lot of opposition to CCSVI currently. Neuros are opposing, some institutes have halted treatment, some are silent. We all know who is responsible for such a behavior.
Anyway, good luck to you ...
PS: as a matter of principle, I do not buy pharma stocks as I believe I am making money from someone else's misery. But thats me. YOu have a different way of looking at these things. I can try convincing myself that the money I put on stocks is used to fund research in MS, but still I am not sure if I can sleep at night having put my money in pharma stocks ...
Listen, the only reason I got so snarky is because of the post prior where it looked like you were accusing me of fabricating my ccsvi story. Here's a link to my blog: http://myhopefuljourneyintoactualmsrecovery.blogspot.com.
If Ty had worked for me, I never would have went off of it. I don't know how ANYBODY can say that this or that drug helps and it's not just the up and down nature of the disease when you are still relapsing and remitting. Once you get to the progressive stage, not only do none of them work, only Betaseron is even approved for progressive and it showed basically no statistical relevance.
I'M STILL WAITING FOR THE DEFINITIVE PROOF. I just can't stand to see it discounted out of hand by people who haven't read the research; that's all.
Problem is, Biogen and others like it are controlling research. They have a huge say in what gets researched, and what doesn't. They should not be doing unethical things like recruiting the chair of the University at Buffalo's Department of Neurology, and appointing him vice president of U.S. medical affairs for Biogen Idec in Boston, Mass. Munschauer, he is also chief of the Jacobs Neurological Institute (JNI), and has assumed his new position Feb. 1.
He was a University at Buffalo faculty member for 25 years and chair of neurology for eight years. What a time to be recruited! Less than two weeks before the University at Buffalo's CCSVI clinical trial results came out!
*Just days before the Clinical Trial results on CCSVI were annnounced, Biogen also hired another influential person, and his wife! He was the executive vice president for Research and Clinical Programs at the National Multiple Sclerosis Society!
Biogen knows all about CCSVI, and they are taking steps to prevent the word from getting out. Just ask people taking Tysabri. They are being called by Tysabri, to make sure they are still taking their medication. When these people with MS ask about CCSVI, the phone Tysabri phone reps know all about it, but get angry over the phone when people bring it up.
It doesn't help that Biogen DOES NOT properly disclose the risks of PML.
Yes, that is why so many researchers have dedicated their entire life to bring a cure to this disease and others.
Tysabri has obviously helped so many people out there. It got young mothers out of wheelchairs and enabled them to take care of their young children again! Just because it is not THE answer to MS does not mean that MS patients should bash Biogen and/or Tysabri (Wolfey and others in this discussion).
Tysabri and other drugs are there because scientists around the world and over the years have put so much work into it being driven by the motivation to help patients like you! (sorry it didn't help you Wolfey!) Is that how you thank them?
This, of course, is only made possible when investors invest their money into it and expect to get a little return out of it (including CCSVI), wouldn't you? Is that evil as some of the MS patients in this discussion make it up to be?
And, by the way, as far as I know, Tysabri is still the most effective and approved MS treatment out there. 'If' CCSVI, one day, is proven to work better, well that will be great!
Believe me, a lot of people I have interacted have MS (myself included). I cannot explain the mental pain and agony this disease causes. Everyone has his own story. I have stopped reading them since I can no longer endure to see what they have gone through. I am a very simple and ordinary guy but I have always tried to make sure I never cause harm or hurt anybody. Remember that none of us into MS by choice (God decided to inflict some of us with it). Put yourself on our position and think. We already have to endure MS and on top of that we have people who will not allow a independent research into a subject which could be the only hope for us.
I do wish you a very happy and disease free life to you and everyone here ... be it supporter or MS or critics of CCSVI ...
I can hardly respond to the idiocy of that response. What in my postings makes you think that I "just had this done"? I had it done on July 15 of last year you moron so I wasn't 'just investigating this'.
I also never said it was free of charge. Do tell in which of my postings you pulled that nugget from? I also stopped my Ty infusions a few months before I even got the procedure done because I wasn't going to continue to pay over 500 bucks a month while continuing to get worse (read; the drug doesn't work).
It never ceases to amaze me the things people make up in their own minds to 'fit' their justification for whatever. I just went back and read all my posts on this topic and not one thing you say is inferred by me anywhere. Must be nice to live in la-la land. We will just wait and see I guess. In the meantime I'll hopefully continue to improve while you continue to pull assumptions out of your ass.