New CTV piece online now
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New CTV piece online now
very interesting.....
thanks again to the wonderful team at CTV-especially Avis Favaro and Elizabeth St. Phillips-
link
cheer
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
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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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 7:03 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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.
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.
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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
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
Do pray tell where we can find this "militant CCSVI hysteria".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..
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
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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
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
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.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