Brightspot wrote:I had the opportunity to talk with Deanna Groetzinger, National Vice President, Government Relations, Multiple Sclerosis Society of Canada. She was attending the First Canadian Patient Summit, which she was on the steering committee for. I understood that she had been working on the steering committee for some months . No where on the MS Society website could I find any mention that there was Canadian Patient Summit under developement. It was not posted on any of their websites, and I am told no mention of it was on their official facebook site. Interesting that they would not wish to share information about their involvement in this summit prior to the summit taking place.
When I approached her, and mentioned my interest in CCSVI, Ms. Groetzinger said to me "there has only been one study". It appears from her title that she is representing the interests of MS Patients to our Government. I found this alarming.
To her credit, Ms. Groetzinger did agree to meet with five of us at our request. Chrystal, SoberSandy , Brian (a well spoken representative of msliberation), and young woman who is a university student recently diagnosed with MS, and I sat with her and explained our concerns. I cannot say I am confident that any progress was made.
I did invite the MS Society to make a public statement that on the basis or recent scientific evidence that it would seem prudent for G Ps to screen MS patients to see if they also have a condition of compromised vasculature.
Please do not hold your breath on this one. Your brain needs all the oxygen it can get.
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