If you could put out a request on your blog for anyone interested in providing me with a CCSVI treatment testimonial and/or a statement or a comment that anyone would like relayed to the MS Society board members, I will happily bring along such documentation with me on September 20th when I attend the first CCSVI Working Group meeting as a CCSVI advocate. They can email me at firstname.lastname@example.org .Note that, even if you have already replied to a similar request from Mark Lane (for another purpose), please send a copy to Shelley now so that she has time to prepare the information for the first meeting.
As explained to me, the CCSVI Working Group will be comprised of 4 CCSVI advocates, 4 members of the National Board of Directors, and 4 representatives of the medical community (an IR, a vascular surgeon, a neurologist and one other doctor). I do not know the names of any of the other advocates nor do I know which physicians will be partaking in this working group.
Mark Lane has most graciously agreed to share with me testimonials he has received but will not be able to do so until after September 15th which won’t leave a lot of time since I will be leaving on the 19th for Toronto. I told him that I would ask you to put out this request on your blog and then he and I can go through our respective lists and whosever testimonial that I do not have which he does, he will then ask permission of that person to share with me.
In an email I received from Deanna Groetzinger, VP – Government Relations and Policy of the MS Society, she explains the CCSVI Working Group as follows: “The working group has been formed to provide advice and recommendations concerning chronic cerebro-spinal venous insufficiency with the goal of positively impacting the Multiple Sclerosis Society of Canada’s approach to research, treatment and advocacy activities. The working group is to identify issues and provide advice and recommendations to the National Board relating to the monitoring of evolving peer-reviewed, scientific evidence regarding CCSVI and treatment, including the progress of MS Society CCSVI clinical and other CCSVI studies; the position of the MS Society with regard to CCSVI especially concerning guidance to people with MS; the type of information and approach the MS Society shall take regarding CCSVI vis-à-vis the federal and provincial governments and professional associations of physicians.”
Monday, September 6, 2010
Your Testimonials - Doing Double Duty
Here is a different request from my (very active) friend Shelley, this time for testimonials from Canadians who have had been "liberated":