time to blacklist the naysayers!!

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

time to blacklist the naysayers!!

Postby brewt1 » Sun Feb 21, 2010 8:14 am

Yes there are a few but what galls me is the failure of educated people to have an open mind! Drug companies, doctors and neurologists have for eons tried to find a "cure". Yes, a few drugs to help but no cures! Along comes Dr. Zamboni and all of a sudden a few of these educated people can only say no. I find it unfathomable a doctor would not refer a patient to find out at least if arteries are posing a problem. It suggests to me at least doctors fear loosing money.

It is time, in my opinion, to keep these naysayers on a list to ensure patients dont go to them. Zamboni has carried out rudimentary testing and his findings are shocking. If these naysayers have something to refute his evidence produce it. To just say NO shows their arrogance! I do not fault them for the need of more testing BUT to not refer patients is unthinkable!
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Postby lucky125 » Sun Feb 21, 2010 8:58 am

I agree that it is frustrating that many docs that we, as patients, depend on seem to be failing us. But just because they don't believe TODAY, doesn't mean they won't come around when more evidence becomes available.

I think it is unfortunate that big names like John Richert are not being in the least bit open minded. I think that eventually they will regret their knee-jerk initial responses. So we will steer clear of people like him.

There are more and more doctors who are learning about CCSVI and becoming interested in getting involved. Let's do all that we can to support these open-minded docs.

We don't need to waste our time vilifying the shortsighted ones. Just ignore them.

Take all of the passion that you are obviously feeling and channel it into positive actions. Give the finger to the "naysayers" by hosting a party for Buffalo! That's what my friends and I are doing. That will show them!

Go Team CCSVI!
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Postby sbr487 » Sun Feb 21, 2010 9:43 am

I have been wondering for last couple of days as what our strategy should be wrt to ccsvi

* should we work to prove that ccsvi is indeed true to people whose agenda is to dismiss it
* should we just ignore these -be minded people and work for creating awareness, raise money, provide info to needy etc.

There is no way a pharma can arm twist anyone to take their drugs. So once there is awareness increases, its difficult to create -ve bias
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Postby highhopes » Sun Feb 21, 2010 9:56 am

put your money into research to find what is after the vascular situation (that some people do not even have)... ive been working on iron chelators, but we still dont know how this part of the new puzzle even fits into place... remember, CCSVI is still an infant...
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Postby ms2009 » Tue Feb 23, 2010 9:25 pm

MS societies might not have bad intentions but they suffer for sure from the rigid organizational culture. They think they know best about this MS and that innovative treatment should not have positive results.

So for them. CCSVI is a why bother case?
This $100k (out of $62M/year by the way) is like giving a homeless on the street few pennies that bothers you in your cup holder in the car. Looking at the other millions spent on some very long term studies shows clearly that MS society cares more about their long term funding and operations and much less about the statisical numbers of MS sufferers.

The only way to fix this is to launch a strong campaign to inform donors about what MS patients need currently and why they should not give to MS society but to researchers directly. Social networking made the job very easy.
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American Academy of Neurology

Postby Asher » Wed Feb 24, 2010 9:14 am

There is no single mention of CCSVI on the site of the American Academy of Neurology!? Not even negativity, just a chilling silence.
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