Something has to give.

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

Something has to give.

Postby Rokkit » Fri Sep 10, 2010 3:30 pm

Good grief, something has to give. If the venous obstructions of CCSVI exist, and if they are highly correlated to pwMS, it can't possibly be that hard to demonstrate convincingly to the reasonable scientific community. We're not talking about obscure microbiological phenomena within cells and molecules, we're talking about obstructions a layperson like me can plainly see on a venogram.

Where is the large scale venogram study complete with pwMS, controls, diagnosticians blinded to diagnosis, the works? It can't be that hard. We have got to have something that can lay waste to all this doppler/ultrasound nitpicking. I'm getting frustrated and I don't get why something isn't published or even rumored to be in the works. Forget in the works. I want it published. Today.
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Postby skincoll » Fri Sep 10, 2010 4:15 pm

Man I hate to be the one to point out what I think is the obvious, but the pharmaceutical industry, including its drug pushing doctors, does not want to see one of its major cash cows (MS, a multi-billion dollar market) die a death as a result of it being exposed as a simple venous issue that can easily be solved. I mean we're talking about a very well established and extremely powerful industry here. You should google Rockefeller's 1915 Flexner report if you're not already au fait with that. Don't wait for the powers that be to help you. They won't. We all have to try to stand on your own two feet here, do our own research, and take our own chances. I am very sure we won't see a mainstream embrace of this procedure. Sad, but I think true.

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Postby ozarkcanoer » Fri Sep 10, 2010 4:46 pm

Rokkit,

I think you will see some noteworthy papers on CCSVI published in the next 5-6 months. There is true CCSVI scientific research happening now, but doing the research, and writing a scientific paper and having it peer reviewed takes a bit of time. Even though we wish that CCSVI is proven it won't happen without time and money. What we can do is support those scientists and doctors who see the value of CCSVI and have staked their reputations to do the research and do it properly.

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Postby marcstck » Fri Sep 10, 2010 6:48 pm

skincoll wrote:Man I hate to be the one to point out what I think is the obvious, but the pharmaceutical industry, including its drug pushing doctors, does not want to see one of its major cash cows (MS, a multi-billion dollar market) die a death as a result of it being exposed as a simple venous issue that can easily be solved. I mean we're talking about a very well established and extremely powerful industry here. You should google Rockefeller's 1915 Flexner report if you're not already au fait with that. Don't wait for the powers that be to help you. They won't. We all have to try to stand on your own two feet here, do our own research, and take our own chances. I am very sure we won't see a mainstream embrace of this procedure. Sad, but I think true.

Love you all! Peace.


While I do agree that Big Pharma stands to lose mucho dinero if CCSVI proves to completely knock MS out of the ballpark (which it most likely won't, given that MS is so heterogeneous a disease that CCSVI likely explains only a percentage of the various flavors of illness now described as "MS"), and I've no doubt they're behind some of the stringent arguments against it, it's important to note also that the medical device companies stand to make a fortune if the entire MS population are suddenly deemed to be potential consumers of their goods. Medical device companies are just as unsavory as their big pharmaceutical cousins, and the catheters, balloons, and stents used to treat CCSVI each cost thousands of dollars.

And while I'm at it, I'll also point out that just as the most neurologists are "subsidized" by pharmaceutical companies, most interventional radiologists have similar arrangements with medical device companies.

As a matter of fact, for this very reason, CCSVI has a fighting chance of surviving the vetting process it is currently undergoing. There is money in them there veins, and as much as there is to lose on the MS side of the equation, there is to gain on the CCSVI side…

On the other hand, other possible "alternative" treatments, such as LDN, which can't possibly make anybody any money (Naltrexone is off patent), are left metaphorically at the side of the road by all research interests…

At the end of the day, because of our for-profit medical system, it's all about the money, honey…

One can't be too cynical in this day and age…
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Postby MrSuccess » Fri Sep 10, 2010 11:10 pm

marc - BIG difference between putting a drug in your body v. a medical device .

And that's why CCSVI is causing such a fuss.

The medical devices are a one time [ stent ] event.

The ms drugs are forever.

It's not rocket science ...... deciding which path to take .......



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Postby marcstck » Sat Sep 11, 2010 12:32 am

MrSuccess wrote:marc - BIG difference between putting a drug in your body v. a medical device .

And that's why CCSVI is causing such a fuss.

The medical devices are a one time [ stent ] event.

The ms drugs are forever.

It's not rocket science ...... deciding which path to take .......



Mr. Success


I agree 100%.

I was merely pointing out that there is financial reward to be had if CCSVI does in fact prove to be the real deal, and that neurologists are not the only physicians entangled in the sticky financial web of the medical industrial complex…

I'd also point out that the current crop of stents are indeed a one-time deal, and depending on their long-term venous patency, which is far from determined, may or may not turn out to be such a great thing. Certainly, those patients who have had their stents permanently thrombose can't be too thrilled at the "one-time" nature of the devices.
Last edited by marcstck on Sat Sep 11, 2010 12:51 am, edited 1 time in total.
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Postby Donnchadh » Sat Sep 11, 2010 3:09 am

Marc makes a valid point concerning money: if CCSVI turns out to be correct (at least in a majority of "MS" cases) then the funding is basically just diverted from neuro's/big pharma to IR's and their medical device manufacturers. Cathers, IVUS, etc. aren't cheap and for sterile procedure reasons, are a one time use item.

However, even conceding this point, the huge difference is that the auto-immune paradigm is probably incorrect which means that MSer's are receiving NO benefits at all. They might as well be taking a placebo pill for all the good it's doing.

Liberation procedures seem to be helping in at least some of the cases; and I suspect as the as the IR art improves so will the results.

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Postby Donnchadh » Sat Sep 11, 2010 3:25 am

As someone with "MS" I want to get rid of it as rapidly as possible, so trust me when I say I understand the frustration in seeing CCSVI adopted.

However, we have to recognize that this is at a very early stage of development. Many IR's are excited at the prospect of treating an entirely new class of patients-some even have admitted that they never even knew about the venous disorder and "MS" connection before Dr. Zamboni published his landmark paper last fall. The art of the procedure needs to be advanced-maybe more aggressive ballooning techniques would reduce the re-stenosis rate? So far, most of the techniques have been transferred from work on arteries; maybe something more specific to veins would be more suited? Lots of questions....

A lot of R&D is needed; nearly all stents have been developed for use in arteries, not veins for example. Maybe something specifically designed for he dynamics of veins is needed? A stent which is bio-absorb-able over time so it avoids the thrombus problems?

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Re: Something has to give.

Postby scorpion » Sat Sep 11, 2010 4:52 am

Rokkit wrote:Good grief, something has to give. If the venous obstructions of CCSVI exist, and if they are highly correlated to pwMS, it can't possibly be that hard to demonstrate convincingly to the reasonable scientific community. We're not talking about obscure microbiological phenomena within cells and molecules, we're talking about obstructions a layperson like me can plainly see on a venogram.

Where is the large scale venogram study complete with pwMS, controls, diagnosticians blinded to diagnosis, the works? It can't be that hard. We have got to have something that can lay waste to all this doppler/ultrasound nitpicking. I'm getting frustrated and I don't get why something isn't published or even rumored to be in the works. Forget in the works. I want it published. Today.


Rokkit thanks for getting to the heart of the issue. I am tired of hearing about pharmas, neuros, Colin Rose, Zamboni, and my personal favorite Ashton Embry. I have been saying from the get go that GENERALLY over time scientific discoveries become easier to prove not get more complicated. As you said so eloquently "it can't be that hard."
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Postby bigfoot14 » Sat Sep 11, 2010 5:21 am

Donnchadh wrote:
A lot of R&D is needed; nearly all stents have been developed for use in arteries, not veins for example. Maybe something specifically designed for he dynamics of veins is needed? A stent which is bio-absorb-able over time so it avoids the thrombus problems?

Donnchadh


The bio-absorbable stent is in the works....Abbott lab has begun phase two trials on such a device ...however as you pointed out, this was developed for the arteries but hopefully they will work on a version for the viens
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Postby bluesky63 » Sat Sep 11, 2010 6:37 am

So much to think about -- wish I had time to express myself more fully -- but the stents/ballooning are *not* a one-off event for most of us. Absolutely this is more of a shift from one type of maintenance to another, right? Stent meds, endothelial health maintenance is ongoing -- repeat venograms, surveillance, and ballooning are probably going to be the standard.

Even if we don't end up needing them. :-)

We are in the middle of a rollover from one group of professionals to another, and I am sure that one way or another pharma/medical devices will find a way to profit. :-)

What would be amazing (says the idealist) is if we could significantly influence the direction of our future interventions and treatments. That way at least we'd be paying for something that made sense. I hope that's what we're doing now with CCSVI.
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Postby bluesky63 » Sat Sep 11, 2010 6:44 am

So much to think about -- wish I had time to express myself more fully -- but the stents/ballooning are *not* a one-off event for most of us. Absolutely this is more of a shift from one type of maintenance to another, right? Stent meds, endothelial health maintenance is ongoing -- repeat venograms, surveillance, and ballooning are probably going to be the standard.

Even if we don't end up needing them. :-)

We are in the middle of a rollover from one group of professionals to another, and I am sure that one way or another pharma/medical devices will find a way to profit. :-)

What would be amazing (says the idealist) is if we could significantly influence the direction of our future interventions and treatments. That way at least we'd be paying for something that made sense. I hope that's what we're doing now with CCSVI.
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Postby MrSuccess » Sat Sep 11, 2010 9:57 am

when I say ...'' one time event '' ......... I base this comment on the experiences of those that have reported . I am fully aware of the experiences of those that need more . And the problems with restenosis in and around their stents . That must be so frustrating .

I follow with great interest ..... the process of developement of disolveable stents now in trials [ small ] for arteries .

I hope the CCSVI discovery inspires the stent manufacturers to kick it up a notch ....... and supply the CCSVI investigators with the tool they need to successfully treat .

And if the stent manufacturers .... or their investors ..... make a bundle of $$$$$ ......... I say GREAT .

On that topic ........ I cannot in all honesty ..... call out anybody .... involved with CCSVI ..... MS ...... Cancer ....... Diabetes ..... or the other countless medical conditions ......... that earn a living while trying to help and solve medical mysteries . That includes Neurologists .

It is my deep gut feeling [ real scientific ... huh ] that the solution to pwMS and CCSVI will be the medical treatment of the endolithic [ sp ] lining of the walls of veins . As CL has suggested.

Everything done to treat CCSVI will cost $$$$$.


And I don't care who and where the money goes . I am more than glad to reward the problem solvers .......... whatever their Title .......






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