This Is MS Multiple Sclerosis Community: Knowledge & Support

Comments on this article will be seen by many outside the patient community. Help me bring them up to date! I just added a short comment, there is lots of room for more. Requires a quick registration. You can also email the journalists directly. Sheer volume will get their attention and perhaps they will cover this.

They had no clue about CCSVI, article discusses myelin repair, stem cells, and of course "MS drugs brought in more than $8.7 billion in 2009 revenue worldwide"

(article link)

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

SammyJo,

My gut reaction to this article is that it is "all about the money" !!! And I get angry, angry, angry that all this money and time are being spent on drugs, etc and there is not enough money for CCSVI research.

But thank you for posting this. I get soooo cranky because my head aches and my jaw hurts and I am beyond fatigued. I am cranky because the only USA press on MS is all about business. Where is the USA press stories about CCSVI ???

ozarkcanoer

Remember that Trojan hourse story? We have to use every opportunity to get the word out Here is what I sent the reporters directly:

There is a new way to treat MS - as a vascular disease, with an easy fix - stents.

I just posted a comment on your article, about a recent and radical shift in research which fingers blocked jugulars, a mechanical problem, as either the cause, or a strong co-factor in MS. I am one of only 60 pioneering patients who made it to Stanford in 2009 to get this corrected, with 3 stents in my blocked jugular veins.

I was at Stanford on 1/14/09 for my 2.5 mo. follow up with Dr. Michael Dake, everything looks great, and my jugulars that were 95% blocked, are now 100% open. And I have been seeing symptoms from 15 years of MS start to melt away.

The National MS Society has convened an international panel to review grant applications for this research. Proposals are coming from Universities like Stonybrook, U at Buffalo, Duke, and Stanford, to name a few. This story has been extensively covered in Canada, and is also gaining news attention in the US. When we were in Palo Alto, my husband and I did an interview with Carolyn Johnson, the anchor and health specialist for Bay Area ABC 7.

Thought I'd give you heads up. There is no telling yet how this may affect $8.9b MS drug business, or the makers of stents who may have a new market. But I thought that might be an interesting angle for you to investigate, and perhaps cover.

I'm just an MS patient trying to forestall disability, I have no vested interest, other than salvaging as many fellow sufferers as I can. So I'm taking the time to contact the media, and report on my own treatment for CCSVI. You check out my blog at http://healingpowernow.com.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

thanks, SJ. Did it, and it was easy
Probably easier than sitting inside a wooden horse for hours on end.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Until there is something more conclusive that reversing the stenosis triggers some kind of myelin regenerative mode, remyelination research stll excites me. If you halt the attack mechanism you'll stop the bleeding (a REALLY good thing) but it isn't a complete cure.

I sent this email to the journalists...if they are inundated with similar emails, they may get the message...Richard


Having read your article of January 18, 2010, regarding new treatments for MS, I am astonished that you make no mention whatsoever of the very intriguing studies by Dr Zamboni of Italy, results conventionally known as CCSVI. These studies, undertaken on about 65 MS patients, revealed that the disease has a very significant vascular component, specifically that the veins carrying blood from the brain had stenosis, or narrowing of the veins in all the MS patients, but not in a control group. There is a large scale test for CCSVI occurring at the University of Buffalo, preliminary results of which are to be published this February. There also have been testing and treatment procedures on many dozens of MS patients at Stanford University (Dr Dake) and in Poland (Dr Simka). The experiences of these two doctors has, anecdotally, confirmed Dr Zamboni's thesis. As this is a relatively easy condition to remedy, it will not have the appeal of pharmacological treatments costing many thousands of dollars per patient, but maybe that is a storey in itself.

Yours truly,

I added a comment as well. What amazes me is that something like "Lingo-1" which I remember reading about in a press release months ago can find its way into the mainstream press even though it is not to human testing while CCSVI can't.

I can't get into the comments section even to read comments. Am I missing something? I would love to add a comment.
TIA,
Beth

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

Beth, I think their site has a problem with Internet Explorer if that is what you are using. I had the same problem and switched to Firefox and everything worked fine.

Thanks SD. I am using IE. Drats.

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

I sent an email to one of the authors:

I am sure by now that you have been inundated with info about CCSVI (chronic cerebrospinal venous insufficiency) as the possible CAUSE of MS. Venous stenosis and/or malformation of the internal jugular and azygus veins causes blood to pool in the brain. Iron deposits form there which are toxic to the brain. The immune system pours in to attack the iron.

When this theory is proven, Biogen, Teva and others are gonna be screwed, but stent makers could reap a windfall. Although I am quite sure that stents don't cost 1/10 of what we spend monthly on the current MS drugs that only promise to slow our disease. And stenting veins is hopefully a one time treatment.

I suggest you advise your readers to divest themselves of stock in the big MS drug companies while this info is still under the radar. While it has been widely reported on in Canada and Italy, US journalists are waaay behind the 8-ball.

Thanks for writing something about MS, though. Once I have my veins "Liberated", as the pioneer Dr. Zamboni in Italy dubbed the procedure, I may need some of that myelin repair treatment the drug companies are working on!

I also sent the following e-mail to the WSJ:

Thomas, Jon,

After reading your article on new MS treatments, I am astounded that there was no mention of CCSVI, which could set the whole ms treatment world upside down.
CCSVI is the new hot topic on nearly all of the MS websites, and it has gotten extensive coverage in the Canadian and UK press. Many ms patients around the world have experinced major improvements via the 'liberation procedure' as developed by Dr. Zamboni, and thousands more are clamoring for more doctors in the USA to persue this line of treatment. Why hasn't it been covered in the US press?

crh, keep trying, i'm on IE and it worked after a refresh or two.

i think it's pretty clear they skipped CCSVI on purpose - at least the comments are not being deleted

Remember that the WSJ is a business newspaper

I am going to write them an email in those terms

The article they should write is:

"New MS treatment CCSVI, who wins, who loses"

Then they can do a write up of the projected loss of revenue for the big pharma industry and cover the possible winners - stent mfrs....

That way we get coverage through the back door.....

Thanks Sammy Jo for this info, AND also for your website (somehow missed it before).