New CTV piece online now

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

New CTV piece online now

Postby cheerleader » Sat Apr 10, 2010 4:56 pm

very interesting.....
thanks again to the wonderful team at CTV-especially Avis Favaro and Elizabeth St. Phillips-

link
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Advertisement

Postby Rokkit » Sat Apr 10, 2010 6:49 pm

So now Freedman was misquoted when he called it a hoax. I think I'm gonna throw up.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby Lyon » Sat Apr 10, 2010 7:17 pm

..
Last edited by Lyon on Tue Jun 21, 2011 4:59 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby mangio » Sat Apr 10, 2010 7:18 pm

if it was his veins he would have a buddy balloon them...
shoes were flying at our home television when he spoke,
your too kind with only vomitting
User avatar
mangio
Family Elder
 
Posts: 288
Joined: Thu Dec 31, 2009 4:00 pm

Postby Brainteaser » Sat Apr 10, 2010 7:20 pm

Thanks Cheer - one of the most telling comments was the last one, that Dr McDonald, clearly an experienced medical practitioner, has never seen anything like this before.

Phil
User avatar
Brainteaser
Family Elder
 
Posts: 435
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

Postby cheerleader » Sat Apr 10, 2010 7:25 pm

really well done...some great reporting--and the team was "fair and balanced." Even gave Dr. Freedman his chance on camera...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Johnson » Sat Apr 10, 2010 7:33 pm

It is now out on CTV news that edit 5 people received the Liberation treatment edit in Barrie, Ontario. People are calling me, but I don't have TV.
Last edited by Johnson on Sat Apr 10, 2010 8:03 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Lyon » Sat Apr 10, 2010 7:40 pm

..
Last edited by Lyon on Tue Jun 21, 2011 4:59 pm, edited 3 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby eric593 » Sat Apr 10, 2010 7:40 pm

I can't believe Freedman has been the "expert" voice for MS research for so long. It is embarrassing to see how negative he is on CCSVI. I understand that research is needed before any conclusions can be drawn, but some cautious optimism is at least warranted like Dr. McDonald showed.

The woman with MS who has experienced slight improvements in fatigue, I'm not sure she helped the cause any when she said what it's given her is "hope". That's exactly the type of response that lends itself to a placebo effect. Are patients spending $10,000 for "hope" or for tangible, lasting improvements or stabilization? If she hadn't had the procedure yet, I'd agree with her that CCSVI has given MSer's as a group "hope". But if you've had your veins opened up, you should be looking for something a little more substantial than that, IMHO.

Otherwise, a great show. Glad a lot of press was given on how the earlier work was dismissed/rejected so long ago.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 4:00 pm

Bucket List

Postby PointsNorth » Sat Apr 10, 2010 7:43 pm

Rokkit,

Please pass the bucket when you're done. Why would I want to donate money to the MS Society, even when it's ear-marked for CCSVI? Do we want to fund Dr. Freedman's CCSVI research? We deserve real transparency here.

PN
PointsNorth
Family Elder
 
Posts: 511
Joined: Mon Sep 04, 2006 3:00 pm
Location: LeftCoast Canada

Postby CureIous » Sat Apr 10, 2010 7:52 pm

Lyon wrote:Another factor is that there is no doubt that he's well aware of the militant CCSVI hysteria and there is no doubt that when speaking on camera he was aware that he's viewed as villain by most everyone interested enough ito watch the video..


Do pray tell where we can find this "militant CCSVI hysteria".

Is calling one's doctor considered militant now? Maybe knocking on a few doors? For a teensy tiny percentage, going where the treatment is, the rest without resource diligently banding together, networking, sharing information and helping each other, is that militant too?

Just CureIous is all....

Oh and I'd prefer to not have internet references for said militant hysteria, if at all possible. Prefer real time, real life examples not internet postings...

Mark.
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
User avatar
CureIous
Family Elder
 
Posts: 1204
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby eric593 » Sat Apr 10, 2010 7:53 pm

Rokkit, I agree. Freedman would probably like to start his MSS-funded research off by taking his EAE mice and proving they don't have stenoses, thus refuting CCSVI as a theory (of course the mice wouldn't have CCSVI since EAE is NOT nor has it ever been an adequate representation of human MS).
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 4:00 pm

Postby Lyon » Sat Apr 10, 2010 8:13 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:00 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Brainteaser » Sat Apr 10, 2010 8:46 pm

I don't think Freedman was nervous. Rather, he was trying to look both at the interviewer and then the camera to engage viewers - but he wasn't doing it very well.

Second point - you'll never get anything positive out of the likes of Freedman, so why worry. McDonald and Guest sound like terrific contributors to the progress of CCSVI. Somebody - contact them and thank them.

6 cases, 3 with noticeable improvements, 1 unknown and 2 minor improvements - obviously placebo and a waste of money.

CCSVI is perhaps not necessarily a one off event. The lady with hope, perhaps now has the energy to do much needed exercising or she might need follow up treatments.

Phil
User avatar
Brainteaser
Family Elder
 
Posts: 435
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

Postby eric593 » Sat Apr 10, 2010 8:53 pm

CureIous wrote: For a teensy tiny percentage, going where the treatment is, the rest without resource diligently banding together, networking, sharing information and helping each other


Please don't assume that everyone who hasn't "run off" for treatment doesn't have the resources for it. Many of us prefer local doctors in case problems arise. Some of us need more evidence than anecdotal reports of vague symptom improvements before we are prepared to undergo treatment. Money doesn't have anything to do with it for many of us... Managed care and evidence are more important to some of us.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service