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

Postby Sharon » Tue Dec 08, 2009 2:15 pm

Cheer wrote
Dr. Dake agreed to open those veins, and never made any promise or statement as to the relationship to his MS.

DITTO!! Same with me, same with my daughter. He was treating a vascular condition, not MS.

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Postby jamit » Tue Dec 08, 2009 2:59 pm

I still think it is plain common sense that they are overwhelmed by people inquiring about ccsvi and that stopping surgeries and starting the clinical trial is a good thing.

That said I had forgotten about Lawrence Steinman being up there. I have done a lot of medical research because I also invest in biotechs, if you cannot beat them join them sort of thing and analysts or rather drug companies and biotechs have often used Steinman and his "opinions" in to me what looks like an attempt to trash competition in press releases.

He was part of the initial Antegren/Tysabri enthusiasts, but quickly trashed Tysabri in favor of what to me looked liked his own vested biotech interests. Of course, my opinion, but he certainly never appears objective to me and one that I view being against everything that he has not a financial interest in or partly can be credited with himself, again, of course, my opinion. But perhaps there is value in ccsvi for him if he gets on board as the first neuro, one can only hope.

It is a problem that universities in the US need money from donations from companies which often throws objectivity out the window. But a number of European countries and Canada are already very interested because if there is something more to ccsvi like drugs out the window countries with universal healthcare stand to save as bundle on drugs, always works as an incentive!
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Postby jr5646 » Tue Dec 08, 2009 4:22 pm

I didn't read the e-mail, but here's my take on Steinman (below); from what I remember (quite a few years ago), he pioneered monoclonial antibody research and warned folks about the potential dangers (now Tysabri)... I thought he was sincere, and started up his own biotech shortly thereafter out of frustration with big pharma.??? I could be wrong though.

Let's face it, ccsvi needs a neurological component on board with the vascular or it's going nowhere...

Zamboni even had a neuro on his team....

jr5646 wrote:Hi Lora... I initially felt getting neuros involved was going to be a bad idea, but now I'm completely convinced they need to work together.

I think you are wrong about Steinman. Please take a look at his CURRICULUM VITAE:

1) Practically most, if not all all ms research is looking at drug therapy..

2) Let's assume CCSVI pans out for a second... The mechanism that allows an excess buildup of iron in the cns is repaired (no more blockage / iron buildup). Is the BBB damaged too? How do we remove the excess iron and the immune response from the cns? If the iron is removed, will the immune cells doing cns dammage simply go away or do they continue doing damage? Can any residual damage be repaired? All the more reason to have a neurological component involved.

3) Have you reviewed some of this guys work? Just scan the titles, of almost 500. Extremely impressive...

4) Isn't Dake doing research for a stent manufacturer?

5) Maybe he started his own company because he was sick of big dictating pharma.

6) Even though Steinman's developments in monoclonial antibodies led to the development of TYSABRI, I believe he adamently warned folks about the dangers and advised not to use it.

7) Bayhill is working on a vaccine to re-train the immune system in conjunction with a vascular drug:

Plus, I think he's in the same building as Dake ! and if this guy is as good as he looks at getting funding, they'll need it... the research isn't going to happen for free, ya know !

Who knows, the clinical trial (when and if does depvelop) may simply focus in on the newly DX and hang us all out to dry... I can only hope and pray not.

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Postby frodo » Tue Dec 08, 2009 4:23 pm

Sharon wrote:DITTO!! Same with me, same with my daughter. He was treating a vascular condition, not MS.

About ethics:

Maybe they try to say that nobody has ever fixed a vascular condition in a MS patient and they don't know how the reaction will be, but, even in this case, no test for diagnosis of MS exists!!! they can not claim that you are a MS sufferer 100% if they don't have a piece of your brain on a table.

Now, wouldn't be unethical to leave unfixed a potentially dangerous vascular condition in a person that COULD have MS but nobody knows for sure?
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