ECTRIMS 2010 and CCSVI

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

Postby cheerleader » Mon Nov 29, 2010 9:21 pm

Dr. Timothy Vollmer--in a video explaining clinical research to patients--and why his research focuses on clinical trials of pharmaceuticals.

"MS is an area of medicine with very rapid advances being made. In fact, we have almost an embarrassment of riches. We have so many different therapies that have been developed now, that conducting the clinical research is actually the limiting factor"....

in at 10 minutes....

http://www.youtube.com/watch?v=Myc8UsPCs58

In 1996, Dr. Timothy Vollmer, M.D., was appointed Director of NARCOMS. He initiated enrollment through recruitment strategies and began to assess disease specific information through an enrollment questionnaire. Recruitment was initially slow to progress due to insufficient funds and an overall lack of awareness of the Registry’s function and value.

As the size of the Registry began to increase, pharmaceutical companies began to provide funding which increased enrollment. When the number of participants reached 3,000 patients, Dr. Vollmer proposed to the leadership of the Eastern Paralyzed Veterans of America that they enter a collaboration to enroll veterans with MS in the patient Registry.

http://www.narcoms.org/more
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Postby whyRwehere » Tue Nov 30, 2010 2:39 am

I am totally with Joan on this. You can not have an unbiased opinion, if you are in the pocket of the very powerful and rich pharmacology industry. I, for one, would never have claimed that having a doctor so "well connected," would have been a positive...he would be more like a cop who was on the mob payroll.
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Postby Lyon » Tue Nov 30, 2010 6:22 am

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Postby whyRwehere » Tue Nov 30, 2010 6:33 am

Lyon wrote:we've discussed this before and good luck to anyone who thinks they can find ANYONE in medicine that doesn't and never has had pharma ties.

And that's the way Pharma made it and likes it. Maybe it is time for new laws, if only.
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Postby magoo » Tue Nov 30, 2010 7:02 am

I'm not sure where you've taken the idea that they aren't following any and all leads and the very existence of this statement shows that it's in their minds. Could you define your perception of research because mine includes the act of following CCSVI developments. Have any of us lifted a test tube or conducted a clinical trial, yet every one of us considers that we have "researched" MS.



My perception of research, thanks for asking, is clinical trials in this case. They are conducting a number of clinical trials all involving drugs. The act of following CCSVI research is not enough when this center puts time and money towards research which will be published. I am just saying give CCSVI equal attention before dismissing it.

Again, it's fine when Zamboni says it because he's automatically on the "good guy" list, but it's diabolical coming from anyone who isn't fiendishly drooling over CCSVI?


I have never seen Zamboni take a hard stand saying this is absolutely proven. I would hardly say he is fiendishly drooling over CCSVI. Why do you take such a hard stand???
CCSVI WOULD be a fine ending to this nightmare of MS. The reason so many assume you take pleasure in seeing this fail, not just being a skeptic, is because the debates you hold on this forum are not contributing they are negative and distracting. I assume :lol: that's just the way you like it.

The above considerations should always evoke rule number 1 which regards the fact that anyone here should either have MS or a loved one with MS and is either a heinous bastard or someone who would LOVE to see the end of MS YESTERDAY.


Rule number one here is to take a hard stand on one side or the other??? I have not seen too many people here do that. Most want to discuss CCSVI and do it in an informative and kind fashion.
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Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rici » Tue Nov 30, 2010 9:35 am

http://msj.sagepub.com/content/16/10_su ... l.pdf+html
S24
Capitel 82:
"Dr. Zivadinov received personal compensation from Teva
Neuroscience, Biogen Idec, EMD Serono and Questcor
Pharmaceuticals for speaking and consultant fees. Dr. Zivadinov
received financial support for research activities from Biogen Idec,
Teva Neuroscience, Genzyme, Bracco, Questcor Pharmaceuticals,
EMD Serono and Bracco."

Regards
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Postby cheerleader » Tue Nov 30, 2010 10:01 am

Rici's right...Dr. Zivadinov, Dr. Bianca Weinstock-Guttman, Dr. Fabrizio Salvi, Dr. Carlo Tornatore are examples of neurologists who have received pharmaceutical sponsorships for their research, yet have still been curious and open-minded enough to look into CCSVI research. I know it's been tough on a few of them, and has negatively affected their careers and relationships with their peers. This is just a sad truth, and really not about opinion. It also doesn't mean they're believers or have drunk the cool-aid. It just means they're willing to study venous insufficiency in MS. Because they are curious. We saw the same quality in Dr. Dake, and he remains involved in pursuing studies in the face of lots of negative push back.

All we're asking for is a fair shake. Some more research before neurologists just toss out CCSVI, and only refer to negative studies and negative results ---rather than the studies that show correlation, or those helped by angioplasty. This has been very difficult. You can see the level of anger generated on this board--filled with lay people who haven't put professional reputations on the line. Just their hearts and opinions...but Dr. Vollmer has spent his whole life's work treating MS patients with immune modulating drugs. How much harder it must be for him to look at all the evidence.
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Postby magoo » Tue Nov 30, 2010 10:22 am

cheerleader wrote:It also doesn't mean they're believers or have drunk the cool-aid. It just means they're willing to study venous insufficiency in MS.
All we're asking for is a fair shake. Some more research before neurologists just toss out CCSVI, and only refer to negative studies and negative results ---rather than the studies that show correlation, or those helped by angioplasty. cheer


Yes, I agree we are only looking for neuros to give CCSVI a fair shake. It's premature to make solid determinations. This is why the anecdotal evidence by the people who have gone through this has been so important. Believe it or not, the stories here are of great interest and comfort to many. And the negative outcomes are important because we are all taking a huge risk when we decide to go forward at this time. The risk is worth the potential reward for many as we have seen. Although this is not the evidence the scientific world will use, it is important to patients. That is why most of us are here.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Lyon » Tue Nov 30, 2010 3:05 pm

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Postby cheerleader » Tue Nov 30, 2010 3:15 pm

didn't say the quote was offensive, Bob. I said it illustrates Dr. Vollmer's exclusive focus on pharma sponsored clinical trials-
"MS is an area of medicine with very rapid advances being made. In fact, we have almost an embarrassment of riches. We have so many different therapies that have been developed now, that conducting the clinical research is actually the limiting factor"....


in the meantime, since my post last night, there has been lots of good discussion on this page re: neuros who have participated in pharma trials, yet are open to investigating CCSVI, and acknowledge the 10 positive papers/posters at ECTRIMS that showed a correlation of CCSVI and MS. This is as opposed to simply referencing negative studies, as Dr. Vollmer did in his report.
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Postby Lyon » Tue Nov 30, 2010 3:30 pm

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Postby scorpion » Tue Nov 30, 2010 5:31 pm

Lyon wrote:
cheerleader wrote: All we're asking for is a fair shake. Some more research before neurologists just toss out CCSVI, and only refer to negative studies and negative results ---rather than the studies that show correlation, or those helped by angioplasty.
Again, no one has tossed out CCSVI and in this case all your arguments are kicked out from under you by the simple fact that all Dr Vollmer has done is reiterate what Dr Zamboni emphasized long ago and THAT shouldn't/doesn't reflect negatively on Dr Vollmer in spite of the fact that quite a few people who consider Zamboni a hero/savior also (conveniently) feel comfortable picking and choosing which of Zamboni's tenets they want to follow.


Now lets not bring religion into this Lyon! :wink:
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Postby Lyon » Tue Nov 30, 2010 6:47 pm

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Postby BooBear » Thu Dec 02, 2010 10:14 am

Lyon wrote:Clinical trials are expensive and not all MS centers should be expected to immediately drop their previously funded projects for CCSVI projects and especially not until after venous stenosis has been shown convincingly to be more prevalent in those with MS than the general public.


Agreed. That's why perhaps- just perhaps- those trials should be better funded. The NMSS allocated $2.4MM to seven trials. That is an average of just $342,857.14 per trial. Ludicrous.

And how can we "convincingly show" that venous stenosis is more prevalent in those with MS than the general public without that funding? Clearly the several studies that do indicate an increased prevalence in stenosis with MS are not convincing enough.

Pharmaceutical options seem to be the only ones getting attention at the NMSS or anywhere else- that is really the point. Which is fascinating, because not one pharmaceutical solution has proven to halt progression or cure the disease. Some, such as Tysabri, can't even explain why it potentially works. I am fascinated and disappointed that the community accepts that sort of ambiguity; I am disgusted that the community places a higher standard for CCSVI "proof" than is given to the expensive, risky and ineffective medicinal solutions that are advocated.
Three veins angioplastied.  One renewed life.  
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