Boston Study

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

Boston Study

Postby tazbo » Tue Apr 13, 2010 5:15 pm

It has been retracted. I'm so sorry for all of us who wanted this.
http://bostonccsvi.com/handler.cfm?even ... cpid=26326
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Postby ikulo » Tue Apr 13, 2010 5:31 pm

what happened to it?
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Postby belsadie » Thu Apr 29, 2010 12:56 pm

I've received an e mail from Diane asking for billing codes for procedures, this e mail was on April 9, I sent an e mail after conferring with my insurance re:codes
Nothing further...... :( :(
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Postby Cece » Thu Apr 29, 2010 4:30 pm

wow, what happened there? Another shutdown?
"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 bretzke » Thu Apr 29, 2010 4:49 pm

They were shut down pending IRB approval.
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Postby thornyrose76 » Thu Apr 29, 2010 6:05 pm

It's like everywhere else, road blocks, road blocks and more road blocks... :?
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Postby fogdweller » Fri Apr 30, 2010 11:10 am

I disagree. IRB approval is important and generally available for legitimate medical research/new procedures like this. Once we start getting IRB approval, then we can really be off and running nationwide as a truely legitimate procedure. Patience is hard (ask me, I have been being patient for 35 years waiting for something, anything to come along) but it will be worth it.
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Postby Cece » Fri Apr 30, 2010 11:42 am

I think once we see the first study come out of the IRB process with IRB approval, it will be easier to breathe easy...because there are no guarantees of approvals and right now it is all shutdowns...you say that IRB approval is generally available for legitimate procedures like this? I like the sound of that.
"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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Boston Medical

Postby shoosh » Fri May 07, 2010 10:52 am

I Recieved this Email today
You recently contacted the Boston Medical Center’s Department of Radiology in response to information on Chronic Cerebrospinal Venous Insufficiency (CCSVI).



The information that was posted on the web site s was placed there in error and has been removed. We want to advise you that there are no proposed or ongoing studies on Chronic Cerebrospinal Venous Insufficiency (CCSVI) at Boston Medical Center.



If you are interested in discussing treatment for Multiple Sclerosis at Boston Medical Center, please call 800-841-4325.



We are deeply sorry for any inconvenience.





Sincerely,



Ravin Davidoff, MD

Chief Medical Officer

Boston Medical Center


I did repond with didapointment and Do No harm kind of stuff. Also that I was interested in Multiple Stenosis not Multiple Sclerosis.
and that we will not be silenced!

Anyone Else get this today?

I can't help but think info put out in Boston on May 5th may have promped this.
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Boston Medical

Postby Fidalgo » Fri May 07, 2010 11:52 am

I recieved the same email today. I replied to Dr.Kim a couple of weeks ago when they announced they were putting the study on hold. He had stated at the time they were going through an Internal Board Review and that it may be some time before they would be able to start.
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Same email here too...

Postby Taps » Fri May 07, 2010 12:28 pm

Yup... got the same email and a call today from a Public Relations person trying to do damage control...

Not sure what the conspiracy is here but I'm sure it'll surface one day soon...

The tech bubble burst in the early 2000's, I'm thinking the medical bubble is gonna burst in 2010 and some people in the medical field are scrambling...
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me too

Postby LizNH » Fri May 07, 2010 1:22 pm

I got the same email today too. :( I was hoping they'd get through the IRB process with time, but it appears that the plug has been pulled. Very disappointing.
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Boston Study

Postby belsadie » Mon May 10, 2010 2:38 pm

I am really insulted on top of the disappointment!
I wonder who got to them. After all those preliminary e-mails to all of us and the insurance code nonsense, I'm tired of jumping through hoops for what is fundamentally our right as people who are deserving of this intervention. What a shame; those in Boston have lost their courage and diminished their commitment to healing the sick. :( :x :x :x
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Postby 1eye » Mon May 10, 2010 3:52 pm

I'm disappointed and I didn't even sign up. As far as I am concerned, as an American citizen I am being denied a fundamental human right: life, liberty pursuit of happiness? Denied. Denied. Denied.

I have been hearing this twaddle all my life. Am I sorry I didn't go to Vietnam? Only because of lives I might have helped protect. I don't feel like I owe the Land of Liberty a thing. Even if all I asked for was those three things. Denied. Sorry, too many $$ to give you any of them. Denied. Denied.

Neil Young says 'Don't Be Denied' -- hah! lots of luck.

Mother Earth Will Swallow You. Lay Your Body Down. I guess Mother Earth is getting hungry again.

But hey, there's a chance. India, Bulgaria, Poland, UK? Will the long fingers of Serono, Biogen, Teva, reach that far?

IRB's. Good excuse. Good old American Ingenuity and the Almighty Dollar, again. Good thing I believe in *that* god.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Boston Study

Postby belsadie » Wed Jun 02, 2010 4:04 am

I e-mailed Boston Med Center and asked for an update and their reply stated that "in order to proceed with any study at BUMed Center,we need approval by the IRB. This will likely take a few months." Dr. Kabutey then stated that he would "be in touch, as soon as we are underway."
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