The silent treatment: How Canada has failed MS sufferers

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

Re: The silent treatment: How Canada has failed MS sufferers

Postby MrSuccess » Fri Jun 28, 2013 4:41 pm

regarding Clinical Tials . As hard as this is to understand and accept .... at this stage of the CCSVI game ...... what would be the advantage in having those already pro CCSVI conduct such an exercise ?

They already seem to be convinced that Dr.Zamboni's theory has merit .

The BEST course of action is : have those "sitting on the fence" and mix in some ardent anti CCSVI non believers ...... give them research funding ...... then let them PUBLISH their results in a CCSVI Trial. :idea:

Then .... their work comes under the microscope . Their methods.And THEIR reputation.

I know , FAT CHANCE.

Far better to condem and criticize from the safety of the sidelines. :twisted:

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Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Sat Jun 29, 2013 11:23 am

Mr.S, I think maybe you missed something. I am not advocating putting any doctors on trial. I want the procedure to be verified in a large pan-Canadian trial, to see if patients (and we don't know which ones ahead of time because of randomization) benefit from the CCSVI procedure. If you want to put all the CCSVI doctors in some other trial to see if they are honest or deluded or drunk or whatever, go ahead.

What is being tested is efficacy of a procedure that is not standardized at treating a nearly untreatable condition which is very often misdiagnosed. There are already enough 'gotcha's' that we do not need to introduce inexperience just to satisfy the scruples of skeptics, amateur or professional.

The procedure we are putting on trial should ideally be performed by those who have the best track record as of this moment. Anything less deliberately obscures the results, and has the potential to hurt patients, as well as do them no good.

Do we want to heal people or prove a point?

Personally, without so much as a show of hands, I would not put any faith in such a trial done without the use of IVUS.

Canadians are faced with wanting doctors to do this unstandardized procedure as it exists today. We think it might be efficacious. Do we not want our doctors to have the best available assistance and advice? To be shown how it's done by the best? Or because we don't think it is important enough, will we be satisfied with the equivalent of an appendectomy performed in a taxi-cab by a sixteen-year-old?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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