This Is MS Multiple Sclerosis Knowledge & Support Community

Yes, CCSVI is a recognized vascular condition according to the Consensus Document of the International uni0n of Phlebology - of which Canada is a Member Country.

Hi all,

Brightspot has also posted the complete transcript at the link below. Sorry, I should have checked before posting a new entry about it.

http://www.thisisms.com/ftopict-11636.html

Thanks, Brightspot!

Brightspot, I'm sorry I just posted the transcript on a new entry - should have checked here first. Gordon, I think what you suggest is long overdue, but better late than never! A third party audit is needed ASAO - of e-mails, phone calls, correspondence, transcripts of Meetings, bank statements, gr...

Below is the transcript as received in entirety from Brightspot, which should be posted on the Gov't website in the next day or so. In English & French throughout. Only change is some passages I highlighted in bold to make sure not missed. YS doesn't even address Dr. Duncan's concern expressed f...

Hi Brightspot, All these links below have had info re CCSVI & the Int'l uni0n of Phlebology. MS patients have been aware of this...why hasn't our advocate agency been aware...or so they say??? It's very clear that YS and the rest of the MSSC have chosen not to see/read/inform themselves of anyth...

A HUGE THANK YOU to Brightspot, Rebecca Cooney, Andrew Katz, Dr. Duncan, Dr. Bennett and any other people appealing the government for immediate CCSVI testing and treatment for MS Patients in Canada alongside the further research proposed. You have each carried the crushing weight of 75,000 MS patie...

We could always ask the likes of Dr. Freedman and his collegues how they would design such a study. There would be two outcomes, one that they would realise they have been using us MSers as a cash cow and not doing anything to understand our disease process.Second it would give them something produ...

Thank you for your reply - and most especially your assurance that you and your team will figure out how to address compassionate therapies for these patients who cannot be included in the trial. I think the IRB that's watching over Dr. Sclafani's study would have to grant an exception and allow co...

Dear Dr. Sclafani, Thank you for your reply - and most especially your assurance that you and your team will figure out how to address compassionate therapies for these patients who cannot be included in the trial. Please let me know in a "PM" if you are aware of any such studies already s...

Dear Dr. Sclafani, Thank you for all the support and helpful information you have been providing to us MSers on this site. Your kindness and caring are very much appreciated. I just read on your post that the IRB, (as part of their approval), has designed exclusions for your research. Anyone is excl...

Another Amen to Eric593's proposal.

Who dropped the ball indeed? We have a right to know, don't we...after all, our health has deteriorated in the years that were allowed to lapse without any research or studies being done on CCSVI. And they should be held accountable, shouldn't they?

Fully agree with you Gordon and Ruthless. They have held our health hostage by not doing any further research on CCSVI (an old idea, admitted by them) for years. They probably would not have done anything had they not been pressured by patients following W5's first story. They keep patting themselve...

PCakes, you are so right. Joan/Cheerleader, you are our heroine. Because of you and all that you have done and continue to do, we will hopefully soon have relief from symptoms and an improved quality of life.

The MSSC should have appealed for this money to fund CCSVI research years ago. The recent letter below - also appealing for donations - states that CCSVI is an old idea....so why wasn't this old idea researched before? We have already lost years because they chose not to reseach CCSVI until after th...

BramptonGuardian Article: Man gets booted from MS Walk www.bramptonguardian.com Last week, Mark Stewart, 41, and his 10-year-old son arrived at the Terry Miller Recreation Centre to take part in the 2010 Brampton-Caledon MS Walk. They weren't allowed to take part because of a sign on Stewart's wheel...