This Is MS Multiple Sclerosis Knowledge & Support Community

Just in.. and in response to an e-mail i sent early in June.. let's hope it's CCSVI keeping them busy.. Warning! will infuriate!

Thank you for your email of June 3, 2010, addressed to Minister Falcon, regarding Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the diagnosis and treatment of Multiple Sclerosis (MS). I have been asked to respond on his behalf.

At this point in time, the CCSVI technique is experimental and not currently available through publicly funded health institutions in Canada.

Based on results published to date, there is not enough evidence to say that obstruction of veins causes MS, or to determine when this obstruction may occur in the course of disease. Indeed, Dr. Zamboni, who pioneered this research, has cautioned that people with MS should not rush to seek the surgical procedure to unblock veins until the proper clinical studies have been conducted.


As with any experimental or new procedure, our medical experts will evaluate the clinical research as it becomes available. Once it has been established that the procedure is safe and effective for British Columbians, a funding decision around CCSVI will be made.

The Ministry of Health Services, MS clinical leaders, Michael Smith Foundation for Health Research, and MS Society will continue to work together to assess the evidence being accumulated on whether this is an important breakthrough treatment for patients.

Thank you for taking the time to contact us and share your concerns.

Sincerely,

Valerie Tregillus

Executive Director

Primary Health Care

Not a great letter! Why do they think CCSVI is "technique" and not a condition? Who said it caused M.S.? At any rate all you get from this is a not interested until their medical experts review clinical research data. You have been told that this is not near any policy change decision. It would seem that more factual documentation could at least change the misunderstanding about CCSVI.??

It's a form letter. I received it twice already.

Doesn't surprise me, but it's still disappointing.

Yes, it is a 'canned' response.. i have many in my 'inbox' and.. i have responded to this and all the others with research links and corrections.
Today's included the base research links along with links to Barb Farrell's story.. and i am now using 'angioplasty' as the key word.

Anyone who works in any Deputy Minister's office will confirm that letter's/e-mails are the best way to get attention.. lots of them!!

Please reply to them and explain clearly in capital letters that the

)_*()&**()&^&*)*^&*^* MS society does not represent MS patients. They have infected the goverments of this great Country and they say NOTHING that is of Importance.

Gord

Great work PCakes! Thanks for keeping decision makers engaged with your strong, rational, fact based perspective.