Hi SS... I'm finally home and back online.. past midnight for you... First.. the response from your MMP, although non-commital, unlike mine, had some useful info in it... links to other areas that might serve you/ us better especially the CIHR. I'll be using that one!
Your response and keeping the dialogue alive is great. I'll be anxious to see where this takes you.
As far as shifting the focus of CCSVI.. I completely agree with you on this one. I declared myself as 'a person living with CCSVI' on this site a long time ago. Gonna be tough.. CCSVI is already linked to MS in most doctors minds. Yes, we have The uni0n of International Phlebologists declaration, what we don't have is a connection, professional acknowledgement, documented proof that any or all of our symptoms are a result of this disorder. Once sourced I think we will have the ammunition we need to demand treatment. Cheerleader attempted this with Dr Scafani. No luck. The vascular surgeon I saw, although very interested, felt his hands were tied by the code of ethics. He could not offer treatment until he was certain of a problem as well as certain of the corrective therapy.
This catch 22 is one of the downsides of the Canadian Healthcare System. There is no room for risk takers.
okay..enough of my chatter.. time to write some more letters...
Here is the e-mail response I received.. I made no reference to MS in my original e-mail..
From: Health, HLTH HLTH:EX [mailto:HLTH.Health@gov.bc.ca]
Sent: March-15-10 4:07 PM
Thank you for your email of January 29, 2010, regarding the “Liberation Treatment” for Multiple Sclerosis (MS).
The MS Society of Canada still states that Chronic Cerebrospinal Venous Insufficiency (CCVI) has not been proven to be the underlying cause of MS. Dr. Joel Oger, a Vancouver MS clinician and researcher, has cautioned patients to wait until the entire approach is investigated further.
Research into the “Liberation Treatment” is considered experimental. According to the General Preamble A.9 of the Medical Services Commission’s (MSC) Payment Schedule, the Medical Services Plan (MSP) does not insure experimental treatments.
The Ministry of Health Services relies on the expertise of the Section of Neurology of the British Columbia Medical Association to determine if a given treatment is an accepted standard of care in British Columbia (BC) currently. This ensures BC tax payers are funding proven therapies.
As MSP is not a funding source for research, such funding would come from facilities such as the University of BC, the MS Society of BC and MS clinics.
For more information about the “Liberation Treatment” for MS, please contact your nearest BC MS clinic at:
...followed by a list of MS clinics...
Do they really think that we don't already know where the clinics are? hmm