enough with the US vs THEM already!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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sou
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Post by sou » Thu Apr 21, 2011 4:46 am

I find no study negative. It's the truth we all want to discover. Each so called "negative" study has its role in advancing our knowledge and, sometimes, helps us learn which turn not to take in future research. I find the discussions originating from them very enlightening, provided they don't turn into "us vs them" personal debates.

There is room for everyone in science, as long as their arguments are evidence based. Reflex reactions are really useless.

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Post by Cece » Thu Apr 21, 2011 5:16 am

It's the spin on the studies that is negative. This one showed an association between MS and CCSVI, up to 89% in cases of advanced MS. That information is a break-through in and of itself. This is a previously unknown risk factor with all sorts of intriguing possibilities including a means of removing the risk factor and seeing if patients do better. You can't remove a risk factor of 'not enough childhood vitamin D' or 'grew up in Canada' or 'genetically predisposed to MS.' You can remove this risk factor of 'blockages in the jugular and azygos veins.' We are in exciting times for our disease.

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Liberation
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Post by Liberation » Thu Apr 21, 2011 6:21 am

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Liberation
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Post by Liberation » Thu Apr 21, 2011 6:39 am

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Post by Cece » Thu Apr 21, 2011 6:53 am

Liberation wrote:
Cece wrote: You can't remove a risk factor of 'not enough childhood vitamin D' or 'grew up in Canada' or 'genetically predisposed to MS.' You can remove this risk factor of 'blockages in the jugular and azygos veins.' We are in exciting times for our disease.
Hi Cece, what is the problem with growing up in Canada? :)
I am in MN, it is practically Canada here....I took my kids out to play in the snow yesterday morning! :)
The problem with MN or Canada is the higher incidence of MS. Canada's is the highest in the world.
The only other problem I see with Canada is that Kirsty Duncan is not yet Prime Minister.

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Liberation
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Post by Liberation » Thu Apr 21, 2011 7:22 am

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zap
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Post by zap » Thu Apr 21, 2011 8:48 am

codefellow wrote:
The simplest explanation for such a bias is the fact that if CCSVI treatment replaces drug therapy for MS, the neurologists stand to lose huge sums of money. Notably, the neurologists involved in the University of Buffalo research reported very extensive financial ties to pharmaceutical companies in the disclosure portion of the published article. Thus it is quite understandable that neurologists, including those at the University of Buffalo, are doing what they can to discredit the concept of CCSVI. Very few people would not fight against a concept that has the potential to greatly decrease their earning power.
http://www.nacional.hr/en/clanak/38074/ ... usinessman
Robert Zivadinov adds that clinical research is the most profitable area of work his Centre does. The analysis and research is done in collaboration with the world's largest pharmaceutical companies who provide massive funding for this kind of research, and that is one of the aspects of the financing of our centre. We currently cooperate with five pharmaceutical companies for whom we are working on five big clinical research programs." Zivadinov points out that pharmaceutical companies are in recent years exceptionally interested for research into mediations for multiple sclerosis. While there were in 2001, he says, only a few such companies, there are currently at least twenty that are launching research linked to multiple sclerosis. Zivadinov claims that the result of this interest is something that will in the future greatly advance the treatment of patients, these being oral medications. Up to now medications that have been administered by injections, such as interferones (Avonex, Rebif and Betaferon) or glatiramer acetate (Copaxone), have been crucial in the treatment of multiple sclerosis. Modern pharmaceutics, says Zivadinov, is now trying to get better results through the use of oral medications.

Zivadinov claims that the money that pharmaceutical companies invest in the research into multiple sclerosis is almost equal to that spent on the research of all other neurological disorders put together.

"Financing is very important because you can be the best expert, but if you do not have money for research it is all in vain. There are no successful scientists in the world who are also not good businessmen. In order to be a real scientist in the USA, you have to have a nose for business. Without that there is nothing", says Zivadinov who confesses that this system of research work and of leading the Centre in fact suits him. He is very happy with his life in Buffalo, especially since he and his wife Tina fitted out their family home in Orchard Park not far from Buffalo
Image

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elephants walk softly

Post by 1eye » Thu Apr 21, 2011 9:15 am

What nobody likes to talk about is the usurious predatory pricing put on drugs that would be impossible if the news got out that a) the drugs don't work or b) the procedure will help more. It is right to look at health science and particularly 'MS' health science that way as long as such gouging can be legally done. It may not be good for wrestling, but hey, all's fair in health and war.

Take the money while the taking is good.
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1eye
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Post by 1eye » Thu Apr 21, 2011 9:27 am

Hi Cece, what is the problem with growing up in Canada?
Nothing if you get to adulthood! Clear sailing after that. :)

Watch that first step: it's a doozy.
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codefellow
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zapped!

Post by codefellow » Thu Apr 21, 2011 10:47 am

I suppose I am naive. I want to believe that a doctor who takes the Hippocratic oath will not be unduly influenced by his/her ties to pharmaceutical companies. I suppose that is like believing senators and congressmen aren't influenced by lobbyists.

Thanks, zap, for waking me up to the real world.

:cry:

On the other hand, if you take the spin off of it, at least the numbers do show some of the truth about CCSVI and MS. Only a neurologist could look at those numbers and decide they are not connected.

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Johnson
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Post by Johnson » Thu Apr 21, 2011 2:47 pm

Cece wrote:
Liberation wrote:
Cece wrote: You can't remove a risk factor of 'not enough childhood vitamin D' or 'grew up in Canada' or 'genetically predisposed to MS.' You can remove this risk factor of 'blockages in the jugular and azygos veins.' We are in exciting times for our disease.
Hi Cece, what is the problem with growing up in Canada? :)
I am in MN, it is practically Canada here....I took my kids out to play in the snow yesterday morning! :)
The problem with MN or Canada is the higher incidence of MS. Canada's is the highest in the world.
The only other problem I see with Canada is that Kirsty Duncan is not yet Prime Minister.
You are good Cece. Very smooth. I see a bright future for you as a diplomat, PR person, or even a politician.

I just have to say though, the problem with Canada is not so much that Kirsty Duncan isn't PM, but that Harper is (though hopefully not after May 2nd).
My name is not really Johnson. MSed up since 1993

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Post by rainer » Thu Apr 21, 2011 10:33 pm

Cece wrote:It's the spin on the studies that is negative. This one showed an association between MS and CCSVI, up to 89% in cases of advanced MS. That information is a break-through in and of itself. This is a previously unknown risk factor with all sorts of intriguing possibilities including a means of removing the risk factor and seeing if patients do better. You can't remove a risk factor of 'not enough childhood vitamin D' or 'grew up in Canada' or 'genetically predisposed to MS.' You can remove this risk factor of 'blockages in the jugular and azygos veins.' We are in exciting times for our disease.
It is awesome that they are finding evidence of an association but nothing in the study ever said it was a risk factor.

Dr. Embry comes off like an angry child and damages his cause in the process.

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Liberation
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Re: zapped!

Post by Liberation » Fri Apr 22, 2011 4:55 am

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Post by ozarkcanoer » Fri Apr 22, 2011 8:52 am

I am truly saddened that we are breaking into factions over this matter. I assume the picture shows the mansion of some well-to-do neurologist who happens to have "an anti-CCSVI bias". We are not talking about the science anymore but attacking the people.

When I met with Dr Z last summer in Buffalo he told me : "I do not believe in CCSVI or disbelieve in CCSVI. I am doing science."

Dr Weinstock-Guttman is one of the nicest doctors I have ever met.

My husband was attacked by Ashton Embry for expressing concern over how personal this whole issue is becoming.

I have two stents in my neck. I don't know the relationship of CCSVI to MS. I am not a believer but a hoper about CCSVI. It may be years before we know. It may be the IRs who show symptom relief plus new numbers on CCSVI frequency in MS. Who the heck knows the future ? Good luck to every researcher. Good luck to us all.

ozarkcanoer

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Post by Lyon » Fri Apr 22, 2011 9:16 am

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