This Is MS Multiple Sclerosis Community: Knowledge & Support

Rhonda,

Done!

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Done!
Went shopping with the rest of the world today and tomorrow I am making Easter Brunch for my family! My family is so happy to have me back and they never let me forget it!! Heaven!!!
Happy Easter all!
Sincerely, Rose

Here's my comments.

Dear Julia Brownell,

The facts you presented in your article were accurate enough and I felt the over all content of your report was not slanted in either direction, pro or con CCSVI.

What I take issue with was your headline, your caption, was not accurate. I realize that journalist are taught to create captions that “grab” the reader, but the headline sets the “tone” and readers were set up to believe there was something more to the delaying of the procedures than just simply the delay until the proper clinical trials are in place.

A more appropriate and neutral headline could have been, “Prof. delays performing promising treatment on MS patients with CCSVI until a clinical trial is in place”

The inaccuracies in your headline were twofold as follows.

1) “Prof. and fears” do not belong together in ANY sentence regarding Prof. Dake.
2) “Halts MS Trials” is technically incorrect, as at the time, there was not a trial in progress.

Multiple Sclerosis patients and advocates are determined to find answers to MS. There are billions of dollars available for the testing of pharmaceutical treatments and pitifully little funding left for non- pharmaceutical options. Negative reporting of this promising avenue of research is unconscionable, we need help in acquiring funding and where is there a better research facility than Stanford University ?

I would hope from the response you’ve had to your first article on CCSVI and Joan Beal’s generous offer to provide you with up to date research into CCSVI, along with many of Dr. Dake’s prior patients offering to talk with you “on the record” that you might write another article stating these facts as clearly and neutrally as your first.

Dr. Zamboni and Prof. Dake have never once said this is a cure for MS, they simply are finding venous problems in the vast majority of MS patients tested and Dr. Zamboni has put out a call for, research, research and more research into this correlation.
The biggest hurdle to finding out the true correlation of MS & CCSVI through research is the lack of funding! Stating the facts accurately and unbiased is one of the best ways to achieve this goal, and MS patients everywhere will appreciate those efforts.

Respectfully,
Lora

Ruthless,

Again, I like the way you think since I can't think anymore !!! I wish you lots of luck with your CCSVI journey.

ozarkcanoer

magoo,

I posted a tongue in cheek reply at The Stanford Daily's site that will hopefully get Julia Brownell's attention quick since I used the username "Julia Brownell says". It's the latest post on there and it won't last long, if you read it you'll see why. But hopefully it will encourage her to talk to some of you who have actually been treated for CCSVI either with stents with Dr. Dake or balloon angioplasty with another physician. Thanks for bringing the article about Dr. Dake to all of our attention so we can support him. Unfortunately though, with the big pharmaceutical companies' slimy dollars ready and willing to grease the pocket of struggling journalists there may continue to be some negative press about one of our pioneers in CCSVI.

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<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>

WeWillBeatMS,
I did not get to your response in time and it now seems to be gone. You did however, get the journalist to respond and admit she needs to give our voices a chance to be heard!!!! Great job!!!!!
I am really curious as to what you said?????
Rhonda

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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.

Rhonda,

That IS my post. I'm sure it's only still up because today is Easter. It will be gone tomorrow. I know it's pushing the envelope but I really wanted to get her thinking about how she can make it right. Sorry if I got you excited about it before it actually happens but hopefully she really does consider it. Now that you say that I think I'm going to edit my post here in TIMS.

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<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>

It was in the middle of December that I first learned of CCSVI through an article in The Huffington Post that was reprinted from The Bay Area. In this article there were links that led me to this site and Dr. Dake. This discovery and the confidence I have developed in Dr. Dake and "cheerleader" led my wife to go local. She had her procedure March 29th in Northern California. We have nothing but praise for Dr. Dake, and we believe that he in a profound indirect way is the one who gave my wife the improvements that she is enjoying now.. Go Local and Go until they say Yes!