We Must Send a Message to Stanford: Support CCSVI Trial

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Please add Dr Dake as CC

Postby pegmegrund » Tue Feb 09, 2010 5:39 pm

SammyJo wrote: If you have already sent letters, please email him a copy.


Done - I sent him a copy of what I sent last week. Thanks!
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Postby magoo » Tue Feb 09, 2010 5:45 pm

Done:) He sent a reply thanking us. He's the best!
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.
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Postby ozarkcanoer » Tue Feb 09, 2010 6:11 pm

SammyJo, I just emailed the dean and copied Dr Dake !!

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Postby ozarkcanoer » Wed Feb 10, 2010 10:33 am

:D :D
This morning I received a "Thank You" email from Dr Dake also !
:D :D

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Postby mshusband » Wed Feb 10, 2010 11:26 am

As did I ... now if he could just convince his university to allow him to treat MS patients (again)
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Postby bestadmom » Wed Feb 10, 2010 5:51 pm

ditto.
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Postby catfreak » Thu Feb 11, 2010 2:33 pm

I got an email from Philip Pizzo M.D., Dean of the School of Medicine at Stanford today. It may be a form letter/email that they are sending out but at least I got some kind of response! Here goes:

Dear Ms. Murrah:

Thank you for your communication about the importance of studies at Stanford concerning Multiple Sclerosis. I am responding on behalf of Stanford University. We are committed to advancing medical knowledge in Multiple Sclerosis and other areas where biomedical research has the potential to improve human health. Among our highest responsibilities and major concerns is assuring that any new innovation is developed with the highest degree of human safety, and that new interventions are critically evaluated in carefully performed and institutionally reviewed and approved clinical trials. After careful review at Stanford, we have determined that the initiation of a clinical development program leading to a possible clinical trial will be the next step so that we can fully examine the possible risks and benefits of the intervention procedure to address potential venous obstruction in Multiple Sclerosis. Notably this process will take time, care and judicious oversight. We know that our colleagues in neurology, radiology and cardiovascular surgery share this commitment.

Sincerely,

Philip A. Pizzo, MD

Has anybody received a response from anyone else at Stanford?

Cat
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.
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Postby magoo » Thu Feb 11, 2010 2:52 pm

Hi Cat,
No, I haven't received anything.
The letter sounds okay, but maybe a little dismissive? I guess I am just irritated with the slow response to such a life-changing procedure. :)
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.
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Postby Sharon » Thu Feb 11, 2010 2:56 pm

Cat - I recieved a letter because I mailed all of my letters. You probably got an email if you sent your letters by email. Anyway, at least we know that Pizzo saw the letters and he reacted by sending us a response. The mail campaign did not go un-noticed.

Sharon
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Postby LDNAwareAdvocate » Thu Feb 11, 2010 3:21 pm

I received the same e-mail response from the dean. I'm glad to hear everyone is getting the same response. It sounds like they were getting some heat from us. :) I'm happy!
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Postby CureIous » Thu Feb 11, 2010 3:23 pm

Thanks Cat, that's the same snail mail I received today, and while knowing it was boilerplate in nature (no shocker there), and having understood the "goes without saying" parts of safety, more research yadda yadda, I kind of honed in on the "Clinical development program" part, since it clearly insinuates that THAT is what must occur, prior to any clinical STUDY being initiated, and of course since the study is what we are mostly concerned with, the Clinical Development Program becomes of paramount importance.

This reminds of of "advisory committees" where they "study" the issue until the appropriate number of pension credits are obtained, at which time they will tell you what you knew they would say all along.

Look at how long it's taking Haacke and others to just get TESTING off the ground, going through the proper ethics review process, and that's just to scan people.

They can hold this up in committee for as long as is deemed politically expedient to do so. So we keep writing, because, as far as I'm concerned, the reply isn't something I'd line my cat's litterbox with, if I had a cat...

"Time, care, and judicious oversight" means that if and when anything is initiated, brought to fruition, and results in Stanford getting another feather in it's cap, there will be hundreds of people lining up to take credit for it, "good for them", cause it takes guts to follow the pack and play it safe.

Meanwhile, the MS patient languishes and not in any form of stasis, they progress further.

I recall some of us being laughed at when broaching the subject of inside forces waylaying such research for reasons other than patient safety, which is oft quoted as the single most important qualifier to move to the next level, and is THE number one reason quoted for such waylaying, whether it exists as indicated or not, whether it exists in substantial proportions or not. They could always do angioplasty as a fallback position.

And here we have, in writing, the top brass at Stanford (and I suspect all the replies if they come will be coordinated), telling the public at large with great certainty, that nothing will happen for the foreseeable future.

Conspiracy or not, regardless of label, the outcome's the same.

M.

Just wanted to add, that when they say "clinical development program", what they mean is, this isn't Dr. Dake's study any more, it's every department at Stanford, including neuros, getting a piece of the action, a finger in the pie and a piece of the credit. No, to the average MS person out there, they don't CARE who gets what credit for what study or proper prestige or acclamation, they want HELP and don't CARE about the internal machinations. In this regard though, I can firmly state that Dr. Dake would be most justified in saying, "they started it".

Meanwhile, the patient progresses....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby hopeful2 » Thu Feb 11, 2010 7:30 pm

I received a letter (same text as Dr. Pizzo's) and email from Paul Costello, Office of Communications and Public Affairs. I emailed and sent snail mail to eight others at Stanford but no responses (yet).

Patrice
dx '88 RRMS
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Postby CRHInv » Thu Feb 11, 2010 8:24 pm

Yep, I got the same letter. Man, I hope we are helping!
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.
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Postby Cece » Thu Feb 11, 2010 8:36 pm

i received the same letter from Mr. Pizzo (and the thank you from Dr. Dake, which was nice). It is sad that the brakes have been applied to strongly to his research. I get the fear of liability or moral concerns with the stent migrating to the heart incident and the unrelated, horribly unfortunate death...but I have to assume he's increased the size of the stent (if size was a factor) to make migration less likely and if the problem was placing two at the same time, maybe he can do them one at a time. With the death, it was the prescription of Coumadin that was a factor in the bleed continuing but I don't see Dr. Dake ceasing to prescribe Coumadin. (Unless he would consider using whatever it is they use in Poland!) So, I don't know, write up a waiver to be signed and get on with it! If only university politics could be that simple!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CureIous » Tue Feb 16, 2010 10:57 pm

Just wanted to echo Cece. It's funny, just yesterday I was thinking about how:
A. I sent 6 letters to Stanford
and
B. Only got 1 response.

Okay fine, it's okay because I know they received them, that's the point, BUT, the thought that hit me, was since they sent out what was basically a form letter response to everyone, from the public relations guy, that they were deferring all inquiries to one place, with one unified voice, and responding with 1 catch all letter. I think we all got that by now.

So I was really surprised when today, just one day after Cece, I received a letter from Dr. Pizzo, Dean, one of the ones we wrote to, with exactly the same response as the PR guy sent.

Not that I particulary care about a non-personalized response, as there's no way they can do that, but what really chapped my hide, is how blatant they've become with the whole, "just toss the same form letter at them!" attitude, I mean really, dude could have changed it up a bit or something. Word for word.

Sounds like a concerted effort to me all right! Not for the good either. Looks like the drawbridge has been pulled back up over the moat, and the castle for the time being is impregnable. Just like some hard heads.

M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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