ozarkcanoer wrote:thorneyrose, cheer up... Dr Dake is going to start formal clinical trials soon !! That is why he stopped the informal testing. With the formal clinical trials we will see papers and more evidence for the scientific community. Plus Dr Dake's trial will set standards for the procedure.
selkie wrote:Thornyrose, there's been little media coverage in the U.S. - try getting local media involved. I sent the CTV-W5 link to all local media - none have responded yet, but the more people who demand coverage and attention to Zamboni's work, the better.
Also, I'd write Montel, Oprah, and the nat'l networks - anyone you can think of.
Michael Moore, Bill Moyers, - someone has to help people with MS get the word out.
As for the surgery itself, yes, there are a lot of stories of improvement, but there's also risk involved.
I quit Copaxone over a year ago and when I told my neuro, he didn't bat an eye. He just asked me if I wanted an Interferon instead. I told him, no, I want to be tested for CCSVI - he's not against the idea - but he's not helping me get the testing either.
I think we just have to be very vocal - all PwMS.
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