Good Morning Everyone,
Prairiegirl and whyRwehere thank you for taking the time to add your opinions also. Eric, I have to tell you that I didn’t sleep all night because I was too busy kicking myself for the “recommend” comment. As I said after the brain fog cleared, the MSS has no business recommending or advising for or against any treatment/procedure not now and not even after the years/decades?? of research they need/want to prove/disprove CCSVI. And yet they have been advising (which is recommending in a sense) against patients being tested and receiving treatment in Canada. WHEN ARE THEY GOING TO STOP THIS, RETRACT THEIR ADVICE…and simply state that it is the patient’s decision whether or not they wish to seek testing and treatment in Canada?
Part of the argument presented at the web-cast by the neuro was – there is no protocol and it is not being done here…well, most MSers there knew that yes, there is protocol and that testing was already being done in certain clinics (for a fee) and at least another one that has found a way to work around OHIP. We now know that the procedure has been done on 1 patient in BC and in Barrie, with success and positive results/improvements.
The naysayers doubting Thomases keep going on about the unknown long-term picture, possibility of veins closing up again and millions of other questions with unknown answers when speaking about CCSVI. And yet they obviously did not hold the drug treatments to the same standards and scrutiny.
We have now learned from the recent study about certain MS drugs…that there is no guarantee, no long-term or even short-term assurance on their efficacy – when given to patients with one type of MS rather than a second type of MS. Over the years, people were harmed and their condition became worse.
There are no life-long guarantees and assurances. If the powers-that-be didn’t expect them from the drug-treatments, why are they expecting them from a non-drug treatment? I keep hearing the Italian gentleman saying that in the last 3 years since he was liberated, he has forgotten what it is like to feel sick. 3 years is “long-term” enough for me. 3 good years is a million times better than living with more of the same from the last nearly 16 years.
I notice now that I didn’t explain my reference to Dr. Freedman's research receiving four million dollars (over six years) from the Canadian MS Society in 2000.
http://www.mssociety.ca/en/research/ste ... search.htm
Is the MSS going to at least match this huge sum for the CCSVI studies they so want? Notice the double standard of this neuro – no problem receiving 4 million dollars over 6 years when he is researching his own theory, but doesn’t want money wasted researching a study put forth by a non-neuro (Dr. Zamboni). For him to call this a hoax or as he now says, "could turn out to be a hoax", and all the improvements “placebo”, talk about money going to waste in this research…and then with his team apply for a research grant to study it????? He should not be given the grant. He is completely biased, and I would not trust any results he produced. I think his study would be a waste of money.
And to think he and at least one other vocal naysayer (from the get-go) both sit on the Medical Advisory Committee of the MSS (see below), this makes me shudder.
Knowing that CCSVI is a vascular condition that is presenting in MS patients - ISN’T IT TIME vascular specialists were included on the Medical Advisory Committee of the MSS?
Medical Committees Membership 2009-2010
Medical Advisory Committee
Dr. V. Wee Yong, Calgary, Alberta
Dr. Virender Bhan, Halifax, Nova Scotia
Dr. Joan Boggs, Toronto, Ontario
Dr. Samuel David, Montreal, Quebec
Dr. Anthony Feinstein, Toronto, Ontario
Dr. Mark S. Freedman, Ottawa, Ontario
Dr. Rashmi Kothary, Ottawa, Ontario
Dr. Luanne Metz, Calgary, Alberta
Dr. Trevor Owens, Denmark
Dr. Christina Wolfson, Montreal, Quebec
Dr. John Richert, National MS Society Liaison (USA)
Dr. Jack P. Antel, Montreal, Quebec (ex-officio)
Dr. Paul O'Connor, Scientific and Clinical Advisor (ex-officio)
I agree with Prairiegirl that the decision should be left to the patients. Patients are being forced to go out of the country when obviously everyone would prefer to stay local.
Take care and have a wonderful day, all.