This Is MS Multiple Sclerosis Community: Knowledge & Support

HI FRIENDS good news that CCSVI treatment for m.s trail in AUSTRALIA at ALFREAD HOSPITAL MELBOUNE read infomations http://www.ccsvi.org.au/
regards
seeva :roll:

Congratulations to all the hard-working activists in Australia/New Zealand--especially Kerri Cassidy.
Here is the link to the Clinical Trials Registry.
The study is placebo-controlled venoplasty for CCSVI, and held in Melbourne, Australia

http://www.anzctr.org.au/trial_view.aspx?ID=362107
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Really great news!!

Let's see...primary outcme is change in EDSS? Going for the gold, there, but measuring a MS outcome not a CCSVI outcome. Secondary outcomes are fatigue, adverse events, restoration of venous outflow, and change in QOL.

How many CCSVI patients has the investigator treated prior to beginning the trial?

According to Kerri--the head of the trial, Prof. Thomson at Alfred Hospital, has treated 50 pwCCSVI. (He is her IR) He is a member of SIR and a friend and colleague of Dr. Dake. Dr. Zamboni also visited with him in '11, and is aware of the trial.
The EDSS requirement was made by the advising neuros.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Fifty is pretty good! I was afraid he'd have zero or few treatments.

That figures! It's great if CCSVI treatment results in EDSS improvement, but what MS drug delivers EDSS improvement as an outcome? A reduction in lesions on MRI is an easier goal.

The EDSS is also sensitive to physical disability, which CCSVI treatment may not have as much effect on, and less sensitive to fatigue and cognitive disability, which CCSVI treatment may work wonders on, speaking from personal experience.

But I am griping about a minor part of the trial, when so much of it looks so good. Crossover design with placebo! All patients will get CCSVI treatment in the end, but the sham group will have to wait a year for it. I would prefer if placebo was not necessary but we keep hearing that it is.

All the best to Dr. Thomson and his patients as they embark on this!

this was unimaginable 3 years ago........

and in 3 more years .... a standard procedure .


MrSuccess

Neuros are clinging to EDSS as it will help them to denigrate CCSVI. I would think that a broader disability scale is in needed which would allow for measuring improvement in fatigue etc. That is something that could've been discussed at ISNVD. I'm beginning to think that trying to appease neuros at every turn is not helpful or necessary. The CCSVI war might've started with MS but it will be won when so many other neurological problems are connected to CCSVI. Is pandering to neurologists a necessary step or simply slowing us down and muddying the waters? All that neuros want to do at this point is to 'run interference' me thinks.

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Albany 2010. Brooklyn 2011
Hurry up and wait.