EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Oct 16, 2009 Posts: 1123 Location: St. Louis, Missouri
Posted: Sun Oct 25, 2009 8:36 am Post subject:
I read the Canadian MS Society's posting on CCSVI. It read almost word for word like the USA's NMSS posting. Just like it was copied and pasted !!! These societies want proof and are cautious. I think MS societies as far as scientific advances are concerned, are driven by their scientific committees. I hope the doctors on the scientific committees are educating themselves RIGHT NOW. Maybe WE need to contact these people ourselves. I think the scientific advisors are listed on MS societiies web pages.
Joined: Oct 18, 2009 Posts: 38 Location: Quebec, Canada
Posted: Sun Oct 25, 2009 11:00 am Post subject:
Don't forget we are fighting an annual 7 000 000 000$ MS meds industry. This is too big for the transition to CCSVI to be easy.
I'm pretty sure these pharma are making big enough financial contribution to MS Societies to make them very causious before throwing by the window the utility of their products.
It's only speculation and I don't really know the extent of the big pharma influence, but I'm pretty sure that 7B$ is enough to produce many negative reactions toward CCSVI. In my opinion, we always have to keep this in our head when we read anything regarding CCSVI, including from MS societies.
Joined: Sep 11, 2007 Posts: 3137 Location: southern California
Posted: Sun Oct 25, 2009 11:11 am Post subject:
In all honesty, we do not have enough published research at this point in time for MS societies....after Jacobs first part of their study is released next month there will be more press- and as more research (such as Dr. Dake and Dr. Haacke) is published, there will be pressure placed on the MS societies to fund studies of CCSVI, and on neurologists and vascular researchers to team up and look at this paradigm. Then we can hold some feet to the fire.
We forget, because of the immediacy of the internet, how little time has actually elapsed since Dr. Zamboni's first CCSVI paper was published less than a year ago.
More to come!
cheer _________________ Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS
In all honesty, we do not have enough published research at this point in time for MS societies....after Jacobs first part of their study is released next month there will be more press- and as more research (such as Dr. Dake and Dr. Haacke) is published, there will be pressure placed on the MS societies to fund studies of CCSVI, and on neurologists and vascular researchers to team up and look at this paradigm. Then we can hold some feet to the fire.
We forget, because of the immediacy of the internet, how little time has actually elapsed since Dr. Zamboni's first CCSVI paper was published less than a year ago.
More to come!
cheer
Hi all, I'm reading everything about it, since the birth of the CCSVI post.
I belive we need to be realistic but at the same time we need to keep on "sensibilize".
In my opinion:
1. No neuros or other physician, on the basis of our knowledge should pre-eventively, take part against the CCSVI hypothesis: the autoimmunity is HOW the disease express, not WHY. At times, no idea about WHY has been proven.
2. At the same time we need to remember that, being so many differences between different type of MS, we should expect that the CCSVI will have successes and falls. I mean that telling experiences about the effect of stents or balloning is only ONE experience, and only time will tell which group of patients will improve better and which not.
Yes , the Canadian MS Society certainly does reflect the American MS Society's CCSVI opinion. In my view .... a very positive opinion.
As pointed out by Cheeleader , this is new territory for everyone , including MS Society's. One would expect them to act cautiously.
Every MS Society has a huge responsibility to carefully investigate each new research idea , before providing funding.
Each MS Society has limited funds to grant researchers.
The volunteer commitee members must be cautious when they award funding to MS investigators . For example :
Let's say the MS Society has $M- 100 to grant researchers . No doubt there are more MS research ideas than MS funding. It is the MS commitee members task to fund the best research.
I expect competition for funding to be hotly contested.
As the vast amount of MS Society's funds are grassroots procured ....I expect that same grassroots movement will want a strong voice in how that funding will be spent. And on what.
It seems to me that contacting -with respect and kindness -the research commitee members and asking them if CCSVI can be considered for MS research funds , may be the way forward.
But let's not put the cart before the horse . As of October of this year , the MS Societies have not been approached by CCSVI researchers for funding of this great idea .
And apart from Dr. Zamboni's , there is not enough research material and results complied to entice the MS Society's of North America. Not yet.
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Mon Oct 26, 2009 5:50 am Post subject:
I think, beyond a shadow of a doubt, if this actually does make marked improvements in the QOL of progressive patients, there will be no way they can ignore it. Right now there is nothing. Progressive patients make up how much of the current MS demographic? I don't know but I know it's more than 20%, AND we all supposedly, or most anyway, flip over into progressive at some point anyway. I just don't think anything that would actually show results for progressives could be ignored without looking like a conspiracy, so I think they'll go hog wild over it if it does end up showing that it can provide not only progression halting but improvement. The problem, once again, is that it won't show up in an MRI and thus won't be easy to measure clinically. _________________ http://myhopefuljourneyintoactualmsrecovery.blogspot.com
I'm putting this link (below) in the Canadian MS Society thread because although it's related to the W5 CCSVI documentary, it's also related to the Canadian MS Society and the vibe in the W5 thread is so positive I didn't want to ruin it.
"The National" is the flagship news program of Canada's public broadcaster, the CBC. Last night, to counter the W5 documentary, they had an interview with Paul O'Conner, the Canadian MS Society's scientific advisor, and the likely author of the MS Society's press release on CCSVI a few weeks back. On the bright side, it was considered a big enough story by the CBC that it was the second story on the broadcast, so maybe the old saying "there's no such thing as bad publicity" will be true in this case.
Joined: Oct 16, 2009 Posts: 1123 Location: St. Louis, Missouri
Posted: Sun Nov 22, 2009 1:15 pm Post subject:
dignan... Thanks for the news clip with Dr O'Conner. It is a bit disheartening to watch, but I think that so many patients are convinced by Dr Zamboni's evidence that the Canadian and USA MS societies will have to take notice. I have already emailed my local NMSS chapter and told them that I would NOT sponsor a walk this year unless they pay some more serious attention to CCSVI. This is a boycott of the walk.
I DO intend to donate to either Stanford or Buffalo or Dr Haacke's study.
I was not surprised by his response. I was pleased that he expressed at least some semblance of excitement about this new work, that is what I would EXPECT from the MS society and had been lacking.
Oh, puleeez. He is saying, we know nothing ourselves, but just keep waiting...there could be a risk in testing from the dye (yah, what about the gadolinium for MRIs...that doesn't seem to bother them). And where is the proof going to come from if people don't act?
Joined: Jan 15, 2009 Posts: 322 Location: Connecticut
Posted: Sun Nov 22, 2009 2:04 pm Post subject:
I had a bit of an reaction when he mentioned the possible side effects of the dyes when being tested. Terrific point -- we've been injecting ourselves on a daily/weekly/monthly basis for years with approved drugs and no one is sure exactly how or why they work, not to mention Ty's PML, and he's worried about the contrast dye in MRVs?
I didn't hear him talk about funding any of the studies that are needed. I'm sure hoping that's something they, and all the other MS societies, line up for.
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no single life experience-- like having MS-- defines a person. EP now covers over 5 million true stories about every possible life experience. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in
reaction when he mentioned the possible side effects of the dyes when being tested. Terrific point -- we've been injecting ourselves on a daily/weekly/monthly basis for years with approved drugs and no one is sure exactly how or why they work, not to mention Ty's PML, and he's worried about the contrast dye in MRVs?
