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PostPosted: Tue Oct 26, 2010 2:30 pm 
http://www.facebook.com/notes/ccsvi-in- ... 2254624918


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PostPosted: Wed Oct 27, 2010 6:11 pm 
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Perhaps a national news organization needs to investigate as to who this 34 year old man is and what exactly has happened here. That's more beneficial, as otherwise it's just a possible made up story. And believe me there are plenty of sick people out there that would do such a thing.


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PostPosted: Wed Oct 27, 2010 8:06 pm 
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I am NOT saying it is impossible. If it is true, we (Canadians in this struggle) want and need to know about it!

But if it is true the national media, whether they have a record of being sympathetic or hostile to CCSVI should be all over it. I know several reporters by name who would follow it up tomorrow. And publicity would create sympathy and financial support. So it's hard not to be a little skeptical. On the other if they do not want any publicity - not even enough to determine the facts - than we can't give support.
-d

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dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread


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PostPosted: Fri Oct 29, 2010 10:51 am 
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thornyrose76 wrote:
Perhaps a national news organization needs to investigate as to who this 34 year old man is and what exactly has happened here. That's more beneficial, as otherwise it's just a possible made up story. And believe me there are plenty of sick people out there that would do such a thing.


I can assure you that this story is being told from patients who were given information from someone who knew the man personally. The family ultimately declined to go public with this, so the story cannot be told any more than it has. However, rest assured we are doing everything we can to make sure the facts that come out are respectful of the family's wishes while pursuing the full details of what may have gone terribly wrong with his follow up care.

It is in the best interests of all of us that we learn from this so mistakes do not get repeated.

Sandra

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PostPosted: Sat Oct 30, 2010 3:06 pm 
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oh, I do agree! :) :cry:


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