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90 Minute Webb Forum into CCSVI

Posted: Mon Apr 12, 2010 10:29 pm
by kezzcass
Hi everyone, this is what a lot of us have been waiting for (I will be setting my alarm to join in on this one!):

The National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and what it could mean to people living with multiple sclerosis. The event will cover what is currently known about CCSVI and what yet needs to be determined in order to establish what its relationship to the MS disease process might be and whether surgical intervention can improve the disease course. The live Web forum will feature the following panel:

Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

Register at:

http://www.nationalmssociety.org/resear ... index.aspx

Posted: Tue Apr 13, 2010 12:34 am
by eric593
Thanks for this.

I wonder if the neuros are going to participate in another rousing game of "NeuroBowl" again in order to entertain us at our own expense. :roll:

Posted: Tue Apr 13, 2010 2:11 am
by LR1234
Ok, I am a bit slow when it comes to working out times!! Could someone please tell me what date and what time I should go online (in the UK) to catch this live forum?!!:)

Thank-you, much appreciated!!

Posted: Tue Apr 13, 2010 2:35 am
by bretzke
First report from AAN is not very supportive of Liberation treatment.
http://www.medpagetoday.com/MeetingCoverage/AAN/19505

Posted: Tue Apr 13, 2010 3:51 am
by whyRwehere
They mention stenting in the headline, then talk a lot about Dr. Zamboni, but decline to mention that he was doing angioplasty, which seems to carry less risk....hmmm. Then you get the study spiel...it's so tired.

Posted: Tue Apr 13, 2010 5:33 am
by itsjustme
What I immediately noticed was the blurb in the upper right corner:

"Coverage of multiple sclerosis supported in part by an educational grant from Teva Neuroscience.
With contributions from Genetech and Biogen Idec."

But, I guess that's to be expected.

Posted: Tue Apr 13, 2010 6:14 am
by shye
I was seen by Dr Aaron Miller at the Mt Sinai clinic--I did not know of CCSVI at the time--I recall telling him I was taking injections of methylcobalamin B12 almost daily in order to feel somewhat better--that theses shots helped my eyesight incredibly (clearer, sharper, more color)--
he advised against the shots, and sort of relented to say maybe take sublingual (I had already told him the sub-lingual did not work).
Knew I was in the wrong place....

web-cast

Posted: Tue Apr 13, 2010 6:50 am
by ToddH
I am going to pay close attention to the web-cast tomorrow at 12:00 pm, I am deep in SPMS with my fingers crossed(with tape,:lol: ).

what about reflux

Posted: Tue Apr 13, 2010 7:50 am
by 1eye
However, Corboy suggested several limitations of the studies, including difficulty in replication of the work and the unblinded nature of the trial. "When I showed this information to our pathologists they said, 'Wow. A couple of centimeters of water . . . that's nothing. Who would ever notice that?' There is no pathological or MRI correlation. We need controlled trials to see true effects of stenting.

First of all, the study is NOT difficult to reproduce. Secondly, placebo is unethical, thirdly, if something is not done in a hurry, people will die. third, I suggest that the reflux pressure measurement is being averaged over many heartbeats and may instantaneously be very forceful, being driven by the heart. Fourthly, I would be very surprised if there had been is no pathological or MRI correlation measured by now. Stenting has been used for years. We know what its true effects are.

I think my brain might notice a few centimeters of water if it were going the wrong way through my blood brain barrier.

ok, so i can't count

Posted: Tue Apr 13, 2010 7:55 am
by 1eye
ok, so two thirds. i was in a hurry.

What time in the UK

Posted: Wed Apr 14, 2010 12:55 am
by charlie656
Hello all.

I think it will be on at 5pm to 6.30pm in the UK. Although I could be wrong!

12:00:00 Wednesday April 14, 2010 in EST converts to
17:00:00 Wednesday April 14, 2010 in GMT

http://www.timezoneconverter.com/cgi-bin/tzc.tzc

Hi,

Posted: Wed Apr 14, 2010 1:35 am
by Badger
I think the time in GMT may be 4pm.

http://wiki.answers.com/Q/If_it_is_12pm ... _be_in_GMT

just as well I looked as I was sitting by my computer waiting for it to start. :o :o

Posted: Wed Apr 14, 2010 1:49 am
by whyRwehere
does GMT apply daylight's saving?

Posted: Wed Apr 14, 2010 2:13 am
by MSmama
:oops:

Posted: Wed Apr 14, 2010 4:23 am
by WeWillBeatMS
I hope the MS Society will record this for viewing later online.

faith, hope & love