Biogen fighting CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Vonna » Thu Feb 04, 2010 2:00 pm

ozarkcanoer,
I will readily admit I have no "inside scoop" on this. If he is no longer with the University of Buffalo in any way though, the article is very misleading.

The chief of the Jacobs Neurological Institute in Buffalo is leaving...

Dr. Frederick Munschauer III,... , also is chairman of the University at Buffalo Department of Neurology.

Chief of the JNI and Chairman of the University at Buffalo sure sound like two separate roles.

This is not an argument, just need more clarification.

kjwxau,
For me, the timing for Biogen here is just impeccable. Why would someone leave the study of CCSVI and the possible cure for MS to continue to deal with symptoms of MS? Don't get me wrong, I think it is very important to study the regenerating of myelin. It is VERY needful. But I still don't see why a guy would leave CCSVI research for this, unless offered a great deal of money. Plus, if the medication is already in clinical trial, it's not like they need him to help develop the medication.

Again, I'm not saying my opinion is superior. Maybe I'm just ill-informed. But to me, it still looks like something very underhanded. Especially when I consider Biogen's past record.

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Postby ozarkcanoer » Thu Feb 04, 2010 2:12 pm

Vonna,

I have no opinion one way or the other. I do not know what Dr Munchauser does or does not think about CCSVI or what his motives are for taking the job at Biogen. I have been told that he no longer works for the University. I am hardly an "insider". I was just asked to clear up this one point.

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Postby Vonna » Thu Feb 04, 2010 3:24 pm

You don't have to work for a university in order to be a chairman. Don't know that this is the case, but the way the article reads, that's how I see it.

Again, not trying to be stubborn, just want the truth.

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Postby mohzi » Thu Feb 04, 2010 5:49 pm

Biogen is doing a lot of research on repairing the damage done by MS. A good example is the new trial on Blocking Lingo One. Biogens next focus will be repairing the damage. I am excited they hired someone of his caliber and knowledge.
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Postby AlmostClever » Thu Feb 04, 2010 5:49 pm

WIN-WIN
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby ozarkcanoer » Thu Feb 04, 2010 5:50 pm

mohzi,

You are so right. Now it is time to look at repairing the damage !!

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Postby lilsis » Thu Feb 04, 2010 6:52 pm

i'm a big skeptic especially when it comes to pharmaceutical companies, but the fact that this company is actually working on drugs to repair myelin makes me give them the benefit of the doubt. there will be people with forms of CCSVI that do not involve obvious stenosis, people with missing or malformed veins that will still need drugs to halt the spread of damage and to repair what is possible. i fear my sister is in this group so i am very pleased to hear that there is work underway for these drugs, perhaps we won't have to wait too long for them.
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Dr. Sawyer

Postby Lifegirl » Wed Aug 25, 2010 11:58 am

8O

I think this is a major conflict of interest if he would continue to be on any board.

My post would like to focus on Dr. Robert Sawyer. He was my neurologist and the person who diagnosed me with MS. It was while he worked for Portsmouth Naval Medical Center. I am sure that he has a great medical carreer post Navy from the sound of things.

My problems with the new neuro...

He told me MS wasn't painful for one and tried to convience me I was crazy and it was all in my head.

May 2008 I had a horrible flare up and I contacted his office on a Thrusday before Memorial Day and left a message and was not contacted back. Then I called the neuro on call and was told to wait until Tuesday. I called on Tuesday and got NOTHING back then called again on Wednesday and still nothing. I had a medical case worker and she also contacted Dr. Sawyer and still nothing. I went to te ER that night because I could no longer stand the pain and fustration from that flare up. I then get a call from him the next day and was told, "MS IS NEVER AN EMERGENCY!" I was also told that I had no business going to the ER. I told him that if he had of contacted me back it wouldn't of been needed. He then was a little nicer and had the home health care nurse come to give me the rest of my infusion. That flare up left my right ankle weak and hard to move. The next time I called the office I was told he no longer worked for NMCP (Naval Medical Center Portsmouth). I was so thankful to never have to deal with him again after that.

Now that he has some more power I bet his attutide has only gotten worse. I don't think he should be making decisions on the behalf of MS patients after his actions.

I was diagnosed July 2007 and had balloon angioplasty on the internal right jugular and the azygous June 10, 2010. My ankle moves normal again!
<strong><u>Tina Veach<br /></u></strong>
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Postby whyRwehere » Wed Aug 25, 2010 12:43 pm

man, what a story....he sounds like he shouldn't be a doctor at all.... :(
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Postby selkie » Wed Aug 25, 2010 1:09 pm

"It was not an easy decision. But I have an opportunity to influence the next generation of drugs for MS, and that's very exciting," he said.
Neurologist Dr. Robert Sawyer has been named interim chief of the institute while a search is conducted to find a replacement.


He is still associated with the University in the interim. A definite conflict of interest.


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Postby scorpion » Wed Aug 25, 2010 1:50 pm

ozarkcanoer wrote:Vonna,

I have no opinion one way or the other. I do not know what Dr Munchauser does or does not think about CCSVI or what his motives are for taking the job at Biogen. I have been told that he no longer works for the University. I am hardly an "insider". I was just asked to clear up this one point.

ozarkcanoer


Thanks for trying to clarify Ozark but as you should know that if there is a conspiracy to be found it will be exposed on this board! Rumor has it there is a top secret conference being held in Kisumu, Kenya to be attended by neurologists, pharma reps., people from the media, and family physicians to rid the world of CCSVI research! Of course the mastermind behind this diabolical scheme is none other than evil incarnate itself, DR COLIN ROSE!!!!!!! Meanwhile 1eye has already begun searching their agenda for grammatical errors which would prove that..well it would prove something!!! Stay tuned!
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Postby selkie » Wed Aug 25, 2010 2:14 pm

scorpion wrote:
ozarkcanoer wrote:Vonna,

I have no opinion one way or the other. I do not know what Dr Munchauser does or does not think about CCSVI or what his motives are for taking the job at Biogen. I have been told that he no longer works for the University. I am hardly an "insider". I was just asked to clear up this one point.

ozarkcanoer


Thanks for trying to clarify Ozark but as you should know that if there is a conspiracy to be found it will be exposed on this board! Rumor has it there is a top secret conference being held in Kisumu, Kenya to be attended by neurologists, pharma reps., people from the media, and family physicians to rid the world of CCSVI research! Of course the mastermind behind this diabolical scheme is none other than evil incarnate itself, DR COLIN ROSE!!!!!!! Meanwhile 1eye has already begun searching their agenda for grammatical errors which would prove that..well it would prove something!!! Stay tuned!


personally I think there's so many false conspiracy theories in order to cover up the real conspiracies. :P
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Postby CureIous » Wed Aug 25, 2010 11:16 pm

scorpion wrote:
ozarkcanoer wrote:Vonna,

I have no opinion one way or the other. I do not know what Dr Munchauser does or does not think about CCSVI or what his motives are for taking the job at Biogen. I have been told that he no longer works for the University. I am hardly an "insider". I was just asked to clear up this one point.

ozarkcanoer[/quo

Thanks for trying to clarify Ozark but as you should know that if there is a conspiracy to be found it will be exposed on this board! Rumor has it there is a top secret conference being held in Kisumu, Kenya to be attended by neurologists, pharma reps., people from the media, and family physicians to rid the world of CCSVI research! Of course the mastermind behind this diabolical scheme is none other than evil incarnate itself, DR COLIN ROSE!!!!!!! Meanwhile 1eye has already begun searching their agenda for grammatical errors which would prove that..well it would prove something!!! Stay tuned!


Come come now. Aren't you stuffing the straw man a wee more than necessary? So if anyone questions anyones motives (which understandably, none of us can truly know), they are summarily dismissed as consipiracy nuts? Multiple billions of dollars and the people who corral those very heaps lead to all kinds of interesting scenarios. Most out of our view of course, not like anyone is going to make flyers of their blueprints and drop from airplanes, but, getting back to KISS, following the money isn't rocket science. Sometimes it's a good thing, sometimes it's not.

People have a tendency to shift their moral values in pursuit of many a thing, not necessarily just money, perhaps title, prestige, recognition, infamy. How they go about that, is of course quite varied. Some like "the evil incarnate C.Rose" propped up straw dude you mention, has his own methods of achieving any and/or all of the above, and deserves to be lambasted for his obvious extreme bias against CCSVI, not for his valid, reasoned, and well thought out critiques, he has very few of those. The part left out of the straw man, was just how dim a view he has of any of us on this board or in the CCSVI world unless we buy into his brand of "slash and burn" tactics hook line and sinker.

Apparently though to call him out for his methods is to be 'rabidly attacking in the name of CCSVI, flinging all concepts of logic and reason aside". BS. Look at his webbie, it's all about the recognition. Maybe not the brand you or I would be lusting after, but there nonetheless. He reminds me of gotcha! journalists.

The rock of Gibraltar that CCSVI is primarily up against, is not this other Kenyan straw man, although that sounds good to put up in all it's ridiculousness, it's well, inertia, plain and simple. Systems be they economic, medical, governmental, have this curious trait that the longer they are entrenched in a partial M.O. or paradigm, the slower they are to change, I think we all pretty much get that. Now I don't think that all the combined efforts of all pharmies, along with the heads of (fill in the blanks) societies, be they neuro, charitable or whatever, can stop CCSVI, if it is valid, but that's obviously not going to happen overnight.

Meanwhile, the organizations, which do not like to be pushed into a spot of having to pivot quickly (witness the MSS initial reactions and statements, and their subsuquent announcements of funding of research a mere few months later), seem to be using some very transparent delay tactics. First, dismiss as outright hogwash (or feign complete ignorance which is even worse). That will last for awhile. Then when more evidence begins to come in, when patients en masse report overall improvements (I mean % wise not categorically), then they "soften their stance", give some possible hints of credence, that's keeps x number of people quiet for awhile, but at some time the issue is going to have to be dealt with head on, no more blanket statements as if that is enough to satisfy people in serious disease states. Talk is cheap as they say.

Then we go North of the border, it's a completely different paradigm, interrelated somewhat, but different. Canadians rely on their government for their health care. All redress must go through the government. The government is the Gibraltar that is slow to move, perhaps with some help from those principally in line with the MSS as a whole, namely the neurologists, hardly takes a Phd to figure out where the source of the resistance is coming from there, as there IS no other medical profession tasked with the research and care of MS patients, so it stands to reason that in this case, they would be the ones guiding the government's decisions when it comes to the research and treatment of CCSVI.

In America, it's totally different, so we have a difficult time relating. If my neuro is not on board, I go find another. Same with my GP. I have the option of "shopping around" until I find someone who agrees with me, or at the least, will agree to prescribe the scans to see if something is there.
I have the option of finding my own IR. I have options, so therefore I have freedoms. Canadians do not have that luxury of private insurance then shop til they find what they want, so they understandably are much more vocal and passionate than those of us in the States. Somehow though that passion gets confused with activism for activism's sake, like to protest against things based upon political views, or being anti big oil or corps or whatever. Far from it, they are pro-getting better. Sounds pretty good to me. Some may go overboard in the positivity department, but it's hard to find fault, as I don't personally live there, I live here, I have options, they do not, they are using the methods at their disposal to effect change. Good for them.

Then the pharmies, pharmies are just another corporation, period. They aren't pro or anti anything, except money, which is why they exist. We've discussed this ad nauseum, no need to go further with the money angle, or what Adam Smith would have to say about it.
However, one thing they do have, similiar to aforementioned governments, socieities and the like, is that same inertia, going in a particular direction, slowly but surely. I worked in a computer chip plant once. They were manufacturing chips that wouldn't even be on the market for another year. While we could sit and argue the merits of their latest product, their inertia was already carrying them far beyond that.

Same with the pharmies, they have, and will have much in the pipeline we haven't even heard of yet, but it's there. The pills have been around a long time, but are just now "hitting the shelves", and unfortunately their debut happened to coincide with the CCSVI explosion. Whether one is adversely affecting the other remains to be seen, I doubt on any large scale at this point, but make no mistake about it, they are factoring things into their projections as we speak. Will they go out of business, fold up the corporation and just go home because of CCSVI? Of course not! But they are hopelessly intertwined with the medical establishment, and that combined inertia is not going to be derailed because of some little itty bitty theory by some Italian guy. It might get slowed up a bit though.

I'm wondering how many MS'ers went in for their neuro appt's in the past 6 months and said, "yeah, pills, that's great, what about CCSVI?". Now I do NOT expect those corporations to just tuck their tails 'tween legs and go home. But they have few weapons at their disposal, after all, we're not force fed the pills. So while I expect some gnashing of teeth, perhaps a bit of dirty politics, which appear clean of course from the outside, in the end there is little they can do but adjust and adapt. There will always be MS'ers on drugs. Always. How many will use those drugs in the future, and the #'s the pharmies are using for their 3, 5, 10 year projections, remain to be seen, but I have a feeling that downtrending is one possibility they have considered.
Then they'll just move on to something else, but inventory needs to be depeleted, adjustments made, and that takes time, and I do think they will do everything they can to put as much time between wherever things are now, and where they are going to be in the future. Soft landing as they say. How they go about doing that, is left to your imagination.

Imagine a day 10 years from now, where high risk individuals and/or those with initial presentations, get screened and treated for vascular disease, and those who are negative, or continue to progress, are then also placed under the care of the neuro/pharma establishment. Imagine screening that flushes out the disease before it gains a substantial foothold, think we all agree that would be a worthwhile goal to reach for. Arrest in tracks vs. nebulous cure for unidentifiable cause of MS. Sounds good to me.

I don't think the Gibraltars cannot be turned, but that is one behemoth that has a very very wide turning radius. Think Lincoln Continental, stretched.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Leonard » Thu Aug 26, 2010 1:07 am

I have never liked this Buffalo thing in the first place.
I think it was an attempt by old industry to create a control point.
A control point through which they could control the game, if possible worldwide.
The various signals that passed on this very forum suggesting a conflict of interest of Zivadinov and his guys have never been clarified.
In the meantime, in particular since April, the situation has completely changed, as dr. Dake says in a recent chat video (with intro from Joan).
ccsvi is everywhere now, the Buffalo thing will just dissolve in the noise.
The Biogen friends are now offered an escape to Biogen.
As suggested, probalby to make a new living with medication for repair of the damage caused by MS.
Any thing wrong with this course of affairs: no, I do not think so. This is just a healthy development. And what's good for us is that it proves that ccsvi train is unstoppable; and that those who have been in the front row are now helping to make medication for our future.
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Postby concerned » Thu Aug 26, 2010 9:10 am

Zivadanov and others on Zamboni's team have taken money from Biogen and Teva and a bunch of other sketchy drug companies.
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