Wheelchair Kamikaze responds to Canadian anti-CCSVI decision

[sbr487]

What results from BNAC? Where are they published?

I thought they talked about them all the time because those are the numbers they (BNAC) gave at a press conference and maybe on the web.

[concerned]

Giving a press conference or putting out a press release is hardly the standard in publishing scientific studies, which are usually offered up to the scrutiny of the authors peers and published in a scientific journal.

Remember this guy http://en.wikipedia.org/wiki/Hwang_Woo-Suk ?
He also released his "data" initially in press conferences. That's why people tend to be scared of that kind of thing.

[sbr487]

Giving a press conference or putting out a press release is hardly the standard in publishing scientific studies, which are usually offered up to the scrutiny of the authors peers and published in a scientific journal.

Remember this guy http://en.wikipedia.org/wiki/Hwang_Woo-Suk ?
He also released his "data" initially in press conferences. That's why people tend to be scared of that kind of thing.

Go home, Concerned. You have done a pretty good job. Now don't undo it, as your paycheck is probably on its way ...

[MaggieMae]

Dr Zivadinov was the first American neurologist to put his reputation on the line by seriously researching CCSVI.
ozarkcanoer

I can testify to that. My husband's neurologist made a similar statement to us when we brought reserach on CCSVI to him last year. That Dr. Zivadinov and Dr. Winestock-Gutman are putting their reputations on the line and that their reputations will be ruined when this doesn't work out.

[concerned]

Giving a press conference or putting out a press release is hardly the standard in publishing scientific studies, which are usually offered up to the scrutiny of the authors peers and published in a scientific journal.

Remember this guy http://en.wikipedia.org/wiki/Hwang_Woo-Suk ?
He also released his "data" initially in press conferences. That's why people tend to be scared of that kind of thing.

Go home, Concerned. You have done a pretty good job. Now don't undo it, as your paycheck is probably on its way ...

Show me the money!!!

[garyak]

I enjoyed wheelchairkamikaze's blog on this topic. I liked it so much I took his advice and looked up all the email addresses of the Canadians involved in this decision and instead of telling them to phukoff I wrote this passionate email and sent it to all of them;

CIHR decision on MS

My Name is Gary K, a 49 year old Optometrist from Grande Prairie, Alberta. I have a very progressive form of MS. I am so weak I can barely type this heart-felt email.
I used to be a competitive amateur golfer and am a partner in the largest Optometry clinic in Canada. I feel I am dying of MS . I want this decision that was made reversed as I can't wait any time at all to see if my MS can be treated by catheter venoplasty.
I SUFFER all day and all night with this HORRIBLE disease. I contemplate suicide daily and will consider that as my only option as I deteriorate to the point where my breathing and swallowing abilities get much worse. I beg you on humanitarian and compassionate grounds to please allow Canada to contribute NOW to this venous drainage debate as it contributes to MS and fund research to help solve this debate NOW.
I have been very involved in volunteering,local business and have dedicated myself to a busy Optometric practice my entire adult life with a huge, loyal patient following.
It was a devastatingly sad day for me this last week when I read about this decision. Please help provide answers and hope for Canadians suffering fom MS. This is, afterall ,CANADA for petes sake.
I personally raised over $20,000 for MS reasearch during our annual local MS walk in May 2010.
I feel personally betrayed by all of you.
I want to close by thanking all of you that did take the time to read this difficult email as I wipe the tears from my cheeks.

gary

[sbr487]

I enjoyed wheelchairkamikaze's blog on this topic. I liked it so much I took his advice and looked up all the email addresses of the Canadians involved in this decision and instead of telling them to phukoff I wrote this passionate email and sent it to all of them;

CIHR decision on MS

My Name is Gary Kostiuk, a 49 year old Optometrist from Grande Prairie, Alberta. I have a very progressive form of MS. I am so weak I can barely type this heart-felt email.
I used to be a competitive amateur golfer and am a partner in the largest Optometry clinic in Canada. I feel I am dying of MS . I want this decision that was made reversed as I can't wait any time at all to see if my MS can be treated by catheter venoplasty.
I SUFFER all day and all night with this HORRIBLE disease. I contemplate suicide daily and will consider that as my only option as I deteriorate to the point where my breathing and swallowing abilities get much worse. I beg you on humanitarian and compassionate grounds to please allow Canada to contribute NOW to this venous drainage debate as it contributes to MS and fund research to help solve this debate NOW.
I have been very involved in volunteering,local business and have dedicated myself to a busy Optometric practice my entire adult life with a huge, loyal patient following.
It was a devastatingly sad day for me this last week when I read about this decision. Please help provide answers and hope for Canadians suffering fom MS. This is, afterall ,CANADA for petes sake.
I personally raised over $20,000 for MS reasearch during our annual local MS walk in May 2010.
I feel personally betrayed by all of you.
I want to close by thanking all of you that did take the time to read this difficult email as I wipe the tears from my cheeks.

gary

Gary, I think letters might not have any impact (sorry to say but I am myself very disillusioned with Neuros). It takes a man to accept what you might not like and say that. These guys don't have it in them. Please contact the politicians. I have a feeling that they will listen, although with one eye on your vote ...

[Fernie12]

I like your letter, Gar. Just copy it to some press and politicians - that'll help

[Cece]

Garyak, powerful letter, I hope it hits home.

[thornyrose76]

I'm officially American.

[ozarkcanoer]

garyak, I'm glad you wrote this email and then showed it to us. I am deeply touched and can relate to most of what you are saying. I hope venting your feelings has helped you somehow. I think most of us with MS, mild or advanced, keep these feelings buried.

ozarkcanoer

[vivavie]

Garyak, thank you. Nice touching letter.

I always figured I had less chance to die during the Liberation procedure than when I will jump off the bridge... The risks are far less for me personally.

[concerned]

<deleted by moderator>

Garyak, thank you. Nice touching letter.

I always figured I had less chance to die during the Liberation procedure than when I will jump off the bridge... The risks are far less for me personally.

<funny joke in response to rude comment deleted by user>

But seriously, if people just replied to what I said rather than making insane accusations and rude comments like you just made, things might not be this way. But unfortunately, it's been this way since the first time I asked a question here.


P.S. - Look at my first comment in this thread and how people responded to it. I thought I said some thing rather reasonable and that got turned into me working for drug companies or some other baseless accusation.

[garyak]

garyak, I'm glad you wrote this email and then showed it to us. I am deeply touched and can relate to most of what you are saying. I hope venting your feelings has helped you somehow. I think most of us with MS, mild or advanced, keep these feelings buried.

ozarkcanoer

I have since sent it to several MPs in Canada and then to a major news program with several links to all the collusion, corruption, greed, turf war and how the entire ms society works. I hope the news program bites at what I sent them.