This Is MS Multiple Sclerosis Knowledge & Support Community

last bit...
Me..
"Thank you for taking the time to respond... I will pass your message on and look forward to the "Zamboni Wins Nobel" headline...
My name is Pat and I live with MS."

Mr Burton...
"I am sorry for your illness, Pat. And if that’s the way it works out for this science, I will absolutely be as delighted as anyone! You know, even those who are critical of what’s happened do point out that they are mindful of this fact: There was an Australian researcher who was denounced for saying ulcers are caused by bacteria, only to be vindicated and awarded the Nobel Prize years later."
Tom

patientx wrote

Where is the misquote?

Cheer wrote on Facebook her account of everything she said to Tom Burton

I feel it is important to speak the truth about what I said to Tom Burton, and what was published.

Sharon

Like i ve already said almost one million times, Joan Beal is a woman of steel. This is better describing her in my opinion.

It s people like her many of us, if not all, will keep in our hearts forever no matter the outcome. Which i am confident it will be the best.

bretzke wrote:MS drugs are considered "effective" if they halt disease progression 30% of the time.

hell, as I recall they're nowhere near that effective - they don't "halt" anything, merely increase the length of time between relapses slightly in about 30% of patients, and perhaps reduce number of new lesions (which matters little if the damage to the underlying connections is being done prior to lesion formation anyway). No data showing they change overall disease progression, improve symptoms or quality of life, nothing. blegh

zap wrote: hell, as I recall they're nowhere near that effective - they don't "halt" anything, merely increase the length of time between relapses slightly in about 30% of patients, and perhaps reduce number of new lesions (which matters little if the damage to the underlying connections is being done prior to lesion formation anyway). No data showing they change overall disease progression, improve symptoms or quality of life, nothing. blegh

I think that's right, almost no evidence of any reduction of progression. I have not seen any evidence that it even extends the time until RRMS becomess Secondary Progressive MS. If they can't intervene to stop the disease, can't slow progression, and can't explain in any way PPMS, then they don't have even a rudimentary an understanding of the cause of MS.

CCSVI provides a much better reasoned explaination, and deserves immediate and extensive research!!

BTW, Vascular vs. Autoimmune is actually an old dispute (see Nicolson and McLaughlin, "Socical Constructionism and Medical Sociology: a Study of the Vascular theory of Multiple Sclerosis, Sociology of Health Illness 10:9989, 1987--It gives a good accoung of the theory and how the immune theory won out, largely for reasons other than scientific information. pm me if you want a copy.)

cheerleader wrote:sigh. Not the angle I had hoped for when I first brought Dr. Zamboni's research to Stanford...but it is the truth, if only partial.
cheer

After reading Cheer's entry in her CCSVI facebook site, I was expecting much, much worse. I thought it was not that bad an article, if you ignore the headline. Typically the author of the article does not write the headline, as I understand it, it is his editor's call.

The % of blockages in MS found Zamboni was 100% , not 60% but the article did saythe 60% were jugular blockages, and Zamboini was far more comprehensive than that. The article did suggest that Cheer referred people to Dake, and technically that is incorrect, but she did encourage us to learn more about the condition and was gererous with her information that Jeff had been treated by Dr. Dake, and that he was a wonderful and caring doctor. It didn't really say she was a cheelader of Dr. Zamboni, just for his theory, and I think that is fair and correct. And God Bless her for that !!!

Comment to Cheer: Keep up the good work. What you have done is wonderful and lauditory in every regard. One of the things I personally appreciate is the thoughtful and scientific approach everyone is taking on this forum, and for that the tone was set by You. although the article may not have been 100% acurate, it was fairly good and correct by the standards of current journalism, and frankly was lauditory of you. Besides, those that really matter, Jeff and those of us at the various CCSVI websites are the ones that matter and we love you.

As an addendum, much as we all admire Dake and want his skill and talent to keep treating MS patients, it is true that there is no clinical trials or other rigourously scientific evidence yet that the treatment helps MS. That being the case, if there is no scientif evidence yet that there is a reason to perform the procedure, and once the procedure shows any risks, especially serious ones such as requring subsequent open heart surgery and causing, albeit in an indirect manner, a death, then the institution where the procedure is being performed is essentially operating without any saftey net if they ever get sued. It is a sad state of affairs, but in our system right now I am afraid Stanford really didn't have a lot of choice.

Joan,

Having had four angioplasties two days ago in Poland, I have had amazing improvements as have the several other people I have met here from Canada, Scotland, England. Joan, this would not have been possible without your tremendous will to educate both people with MS, the public, and the medical community. We will always be forever grateful to you and to Dr. Dake, Dr. Simka, Dr. Zamboni and all the other docs who can see logic, improvement, and what is in front of their face.

I walked the 70 steep steps up the castle bell tower in Kracow, today! Of course, I walked down them, also, along with walking three hours sightseeing. I was bright eyed and alert on the 1 1/2 hour bus ride home/my 34 year-old daughter fell asleep! It's amazing how simple CCSVI and the treatment is, and how effective!

There were three film crews here the past few days from Canada, Scotland, and somewhere else. Good publicity will be going out and more will learn about the possiblilities this treatment offers. Always keep in mind that you are the one responsible for getting the word out. The ball that you started will keep rolling, growing, and influencing the spread of this treatment. You are such a gift to us all.

I look forward to the day when all have access to this and do not have to travel out of their country for treatment; however, coming to Poland has been delightful and I wouldn't trade it for a minute! Yes, Joan, I was "out of wait".

Love,
Katie41

Wow! That title really makes you think this article is going to be a train wreck, but it isn't as bad as I expected. It would have just been to good to be true to have WSJ article we were thrilled with.

Now, he says, "I'm sort of viewed as the crazy uncle locked up in the woodshed out back."

You have got to love this guy. Brilliant yet humble. He is anything but crazy and the man has given me my life back.

.

These are all great comments regarding the Wall Street Journal article... But, they probably will not be seen by the general public.

Should we also be posting our comments on the article on the WSJ website? If you go to the link L provided:

<shortened url>

the article appears. At the top of the article are 2 tabs. The one of the right is for comments. As of a couple minutes ago, there was only 1 comment.

magoo said

I think Dr. Dake is taking some pretty unfair licks. He's an amazing, caring, brilliant doctor. His only motive is to help and to further this research. I am so happy he took the chance to treat us.

I totally agree with you. I am so very proud to have been a patient and a stenteer for progress!!! Dr Dake is awesome beyond words!!!!

Cat

Katie41 wrote:Joan,

Having had four angioplasties two days ago in Poland, I have had amazing improvements as have the several other people I have met here from Canada, Scotland, England.

There were three film crews here the past few days from Canada, Scotland, and somewhere else. Good publicity will be going out and more will learn about the possiblilities this treatment offers.

Love,
Katie41

Did any of the film crews interview you after your procedure?

Brian

coincidence??

another Stanford MS story by the same author, the same week. Bit more upbeat, I'd say. wonder why?

link to WSJ

Katie-I'm so glad to hear of your improvements. I hope for the best for you! We need more doctors looking into this all over the world, so MS patients can stay close to home and get aftercare and monitoring where they live. Money cannot be the deciding factor in health and healing. I do not care whose stock portfolio will suffer....this is real, and needs to be researched now.
cheer

At this rate, attitude and allegiances will be changing weekly, and perhaps, daily!

catfreak: i think cafe press should print teeshirts that say, "i'm a stenteer for progress!"

Joan,
I will be forever grateful to have found this site and your reporting last summer. It was all of the research you brought to light here that sent me racing to have Dr. Dake screen me, find the problems and treat me.
Dr. Dake is treating vascular problems as diagnosed. The MS improvements are astounding to all, especially Dr. Dake.
I do not understand why the articles are written in such pessimistic prose. Why no optimism? It is too frustrating.
It is heartbreaking for me to see all of this stop.
I am Free of MS as of this date. 5 months now. Yes, we all know this is new and 'unfounded'.
Why didn't the makers of Tysabri take a personal hit?
I wanted to be a Test Subject. I understood the problems. I would go again right now if offered the chance.
I want every MSer to know it is real for me. I got up this morning, made breakfast for my husband in bed ( as he has for me for 10 years), went to Home Depot, got the spring stuff, did yard work, pulled weeds, washed the house, windows, planted, etc.
Last year this time I could barely walk from the bed to the bathroom.
After 10 years of MS, it is gone and I thank you Joan and Dr. Dake.
I wish I could do something in appreciation for both of you.
Please let me know if I can.
Sincerely, Rose