This Is MS Multiple Sclerosis Knowledge & Support Community

People with MS are a particularly special group of caring, intelligent, and supportive individuals. And I have to add: generous. Almost 600 people from all over the world have contributed $545,000 so far. I work with the BNAC researchers every day and please know that they are working very, very hard to find the answers we are seeking. So, a big hello to all of you out there! I also want to tell you that, as a PWMS, (Person With MS. I prefer to reserve the term "patient" for the specific times when I am one.) it is fantastic to be here at a Center that I feel is the international hub of MS research. Thank you again and again for your interest in BNAC's work and for your support so far. I say, "so far" because we need another $54,000 to finish funding the CCSVI Treatment Study and then we will focus back on finishing the Prevalence study funding. I hope you will think about having a MStery party or making a gift.

A. Embry: Final Thoughts on the Buffalo CCSVI Research Effort

I’m VERY, VERY sorry that I've asked/forced friends & family members to donate for this farce.
Yeah, shit can happen every where & every time in life and actually I should know about it because I'm old & ill enough.... Next life I will do better I promise.

I hope you were able to respond to bnac directly on their page, as well. And know you are not alone on this!

I respect and support BNAC and Dr Zivadinov in all the research that they do. I have contributed personal money to their research plus my sister-in-law and I held a MStery party last summer that also raised a substantial amount of money for BNAC research. It is a mystery to me why so many people are so angry at BNAC. CCSVI may not be the cause or even a cause of MS. Their studies are the only long term blinded studies on CCSVI and they have shown a strong correlation... just not everyone. Go Dr Z and Dr W-G !!!!!

ozarkcanoer

Plus the smoking gun that "MS" patients have more collateral veins. Sounds like vascular disease to me.

I am suspicious of the BNAC research because of the way they have presented their results so far. They have slanted the wording of the results to the neurologists and to the media so that they prematurely state CCSVI is not the cause of MS. The results of their admittedly flawed methodolgy has been presented as disproving ms and ccsvi association. Even with the flawed results, the same numbers could certainly be used to show a definate association. I don't trust them.

I saw the presentation and it seems they want to study as long as possible. These are huge studies, and they are spending a lot of other peoples' money. Being careful not to offend the most powerful interests would seem important. I'm too impatient for all this, as I think the academic arguments do not actually help patients. More people have been helped by pwCCSVI on the Internet than many care to imagine.

It seems to me that I am not only not going to live to see the day this thing is beaten, I am not going to live to see the day people stop telling me about how long things take.

Prevalence rate of CCSVI in "MS" seems like a non-issue to me. It is a real, diagnosable, treatable condition with known measurable physiological effects on the content of circulating blood. If it is treated, then maybe somebody might take some time and money and look at it's relationship to the fabled "MS". But let's get it fixed first, as good as we can. We got enough problems with that, without worrying about its prevalence, in "RRMS" or "SPMS" or "PPMS" or "CIS" or optic neuritis or any other untreatable disease, or in the healthy.

dianabee wrote:I hope you were able to respond to bnac directly on their page, as well. And know you are not alone on this!

I’m not able to respond to bnac directly on their page anymore because they are deleting critiques (e.g. the very questionable statistics of Mr Gary Cutter) pretty quickly, which I had to learn some month ago. So I decided It’s better for me & my health to be no longer a “friend” of bnac and their shady practice.
Best
Arne

until I hear otherwise [ from a good source ] ..... I am of the belief that Dr. Zivadov and Dr. Weinman- Guttstock are working with our beloved Dr. Zamboni. Good enough for me ..... for now.

Second point : Donating funding to the BNAC does not guarantee they will say and create documents , as you wish. It has been suggested that Big Pharma ..... does this . And that's a big bowl of wrong.

Third - and most important - point: in order for CCSVI to advance and become part of MS treatment ...... Neurologists MUST come on board.

Drs. Zivadov & Weinman- Guttstock have just successfully put CCSVI front and center before the Neurological community , at their recently held conference in Hawaii.

Now read this carefully : Had Dr. Zivadov .... produced a higher numerical MS to CCSVI correlation in his Hawaiin presentation ..... his papers would NEVER have been accepted and printed in the Neuro Journal.

The Low numbers ..... are just what the doctor ordered .

For want of a better term .... Dr. Zivadov has delivered the Trojan Horse .....called CCSVI ....... directly into the Neurology stronghold.

Well played .... Dr. Zivadov.




Mr. Success

Just for the records, he is called Robert Zivadinov and her name is Bianca Weinstock-Guttman.