This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

That would be a really good news. We would need more of these. Tracking MS patients in a professional way, not simly by questionaries would be essential to get any result and to avoid complications after procedure.

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??

Yes, there is a conflict of interest. However, it depends on who are the neurologists they chose. The best thing would be if those neurologists and IRs would be chosen who have no financial benefits from MS patients. In case of IRs I would rule out the ones who are profiting from CCSVI operations and I would also rule out those neurologists whose hospital was getting money from Pharma for clinical trials.

Without neurologists it is hard to see the results. IRs know not much about MS, brain and other neurological disorders.

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.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

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 . . .