Jean: The topic you deleted

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Jean: The topic you deleted

Postby selkie » Sun Aug 15, 2010 1:34 pm

Hi Jean, I was right in the middle of responding to your thread when you deleted it.

I think it's a very good topic and a very important question for MS patients & the medical community to ask.

I hope you put it back!!

Here's my answer just in case you're still out there (though it might not make sense to other people as I didn't quote Jean, but basically it was how do we get CCSVI accepted as a legitmate condition on a worldwide basis and become organized worldwide - forgive me Jean if that's not quite it, but that's as well as I can remember it):

My answer was:

Hi Jean,

I've thought this too - remember when HIV was first making news and spreading like wildfire and there were no treatments and few studies. HIV patients rallied and marched on the capitols of their countries until the medical community started to pay attention. Now very effective treatments exist for HIV.

Why has this not been the case for CCSVI, Cancer, and many other serious & terminal diseases?

There is now the CCSVI Alliance (website here in this forum somewhere), but I'm not sure if it extends worldwide.

I think we need advice from lawyers and human rights organizations & advocacy agencies, but perhaps the best people to advise us on how to move forward are the doctors who are on board with this. They might know protocol better than patients, but at the moment they seem to be having their own difficulty convincing their peers that CCSVI is real.

Until the medical community is convinced, most likely the change has to start there & perhaps they're the most qualified to get recognition within their own country.

But I like your idea of a worldwide collaboration. How to achieve it, I haven't a clue. Would love to hear advice from doctors & lawyers & any in the field of patient advocacy.
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Postby Cece » Sun Aug 15, 2010 3:27 pm

Maybe the International Society of Neurovascular Diseases that Dr. Haacke and others are starting, with Dr. Zamboni as president, will be a starting point. I agree that this is a world-wide effort.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby selkie » Sun Aug 15, 2010 10:26 pm

Cece wrote:Maybe the International Society of Neurovascular Diseases that Dr. Haacke and others are starting, with Dr. Zamboni as president, will be a starting point. I agree that this is a world-wide effort.


Thanks, Cece - hadn't heard of that - I'll look it up.
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