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CTV News says BC govt. to track MS patients treated overseas

Posted: Thu Apr 14, 2011 10:57 pm
by Brightspot
CTV National News: Avis Favaro on the study
The government of British Columbia will spend $700,000 to track MS patients who have had the liberation therapy overseas.

I cut and pasted the above from the CTV website.

After hearing this mentioned on the news this evening I could find no further details on the CTV website. I sent them an email asking for more detail.

Does anyone else have further information on this story??

Please post and share with us if you do.

Re: CTV News says BC govt. to track MS patients treated over

Posted: Fri Apr 15, 2011 2:39 am
by Liberation
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Posted: Sat Apr 16, 2011 12:17 am
by Brightspot
Had this confirmed verbally today, by someone who works at the BC Ministry of Health, but still have seen nothing in writing.

Apparently the money for some kind of registry will go to the UBC MS Clinic.

Will wait to see what kind of registry is developed and if it involves a retrospective study which many of us have been calling for.

In the mean time some thoughts....

If it is to be just a registry that is one thing. If it is to be a study, then, I would much rather the money and task be assigned to a group of neutral vascular specialists who could monitor vascular changes, perfusion and blood flow. Those vascular specialists could be given access to our neuro. exams and MRIs to include that data in the studies.

Neurologists who have been actively lobbying against persons with MS having access to vascular medical assessments and advising us not to seek treatment are being tasked with monitoring the results of the procedures they warned us not to have. It is an interesting choice. Does any one else sense a conflict of interest??

Posted: Sat Apr 16, 2011 3:00 am
by Liberation
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Posted: Sat Apr 16, 2011 4:06 pm
by 1eye
I don't know. My DX was made entirely by a radiologist, who was probably more familiar with the details of the tests than the doctor(s) who ordered them. I actually have never seen my neuro do much aside from the usual finger-thumb-nose song and dance. There are probably plenty of experts available.

Posted: Sat Apr 16, 2011 4:43 pm
by PointsNorth
Don't track me; treat me! Great diversionary plan for the MS Clinic to control outcomes . . . kinda like the "trials" planned. One step forward, two steps back. If you're government you think that the best place to park some money would be the MS Clinic, n'est-ce pas? Clinics and MS Society are our self-appointed spokespeople ;) They desperately want CCSVI to just go away . . .