This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.ottawacitizen.com/health/Exp ... story.html

I guess the conflicts of interest were over-looked?

According to the article:

" He said there should be no trials until more evidence is available."

This is moronic. How can ""more evidence" be develped until there are trials??!! that has to be a misquote, or the speaker was dumber than cardboard. Maybe he meant there shouldn't be general teatment available, which is in fact probably correct, but he can't mean there shouldn't be trails.

I think he meant more evidence that the condition itself exists, which might be necessary to some to justify starting to treating it.

Yea, they seem like they want to wait and see what the "seed" grants the MS Societies put out and researchers in other locations find and publish.

*SIGH*

I hope some good papers come out soon.

Oh, yes, we need to wait until we prove CCSVI exists. Because if 'MS' doesn't (and that's becoming more obvious each day) then how could we bill anybody?

Yes, please, prove it exists, won't you? We don't want to be left out in the diagnostic cold. Please, people are really getting tired of 'MS' and what will all us experts ever do?

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

WOW! Thanks for letting us know ...

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

I don't think so. that is not what the article said:
"It's understandable that patients are desperate for a cure, but the CIHR had little choice but to point out that there is no evidence that Zamboni's theory works"

I used to have concerns about whether CCSVI was a real condition or something that was created by the hopeful imagination of Zamboni. However, I don't think so.
1. The IR's are all convinced, the condition exists and treat it for other problems
2. Even the skeptics who don't believe that CCSVI is related to MS were able without difficulty to identify who did and who did not have the condition
3. . Most convincing of all, in several studies including one of the earlier Zamboni studies, the interpreters of the diagnostic imaging were blinded, and seemed to have no difficulty in identifying what were and were not cases of CSSVI.

The only way you can say there is "no evidence" that Zamboni's theory works, is if you say Zamboni is a liar, Simka is a liar, Petrov is a liar, Sinan is a liar, MacDonald is a liar. They didn't invite any of these people to the meetings - in fact they didn't invite anyone who has done the treatment.

The "experts" were not experts in CCSVI.

They hand picked NMSS and MMSC insiders to be the experts, and agreed with themselves by looking at favourable evidence and ignoring everything else.

Every day that goes by without even looking into the answer to this important question 2.1million unnecessary days of suffering for pwMS.

These opinion articles are a dime a dozen. I read at least one of these daily . So many of these are lazy people with voices that have not done anywhere near the required research before they spout off - so sad but I see these all the time. I have sent numerous emails to these "authors" trying to direct them to articles to educate themselves. I recommend we all do that when we see these articles ... gary

Just wanted to let it be known that a good portion of the MS Societies
seed grants were alloted to Dr. Freedman and a Vascular specialist called Dr Torres. It will be examined over a two year period then we can probably surmise the results might be skewed since they will develop their own protocol in determining the probabilities of CCSVI. I was asked to take part in that study in Ottawa which I declined withought a second thought.
IMO my bets are probably on Saskatchewan proceeding with the trials and even at that will take a few years to compile .
At this point those in Canada less Sask. have to travel and pay out of pocket.

Take Care All


Norm

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In a perfect world, my Neuro would like to be a vascular specialist.
'92 diag RR - '05 SP

No Problem!!! I'm always here to help!

Those negative and backward thinking Canadians have a place reserved in hell, they also think they are invincible, that adversity, poor health will never befall them. It will, lets hope, and only then will they GET it.

"Why, this is hell, nor am I out of it."

They'll never get it. They don't get sick, they just live right.

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

Nicknewf: I agree. Not only were Dr. McDonald and others not invited to the meetings, Dr. McDonald was intentionally excluded when he asked to attend. How objective is that?!?

Dr. McDonald has tested over 300 people (including me) in Barrie and over 90% meet the criteria for CCSVI. Dr. McDonald has invested considerable amount of his own time and money into this. Dr. McDonald has been to Italy to train with Dr. Zamboni. He has taken three of his staff to train there as well. He has also been to Ottawa, Toronto, Albany, Bulgaria and Brooklyn, all at this own expense to learn everything he can about CCSVI. Why would he do that if he wasn't such a strong believer in CCSVI as a result of everything he has seen?

Dr. McDonald is not doing this to make money. He and Dr. Guest (an IR) did six procedures at no cost to patients or government before they were shut down. His office is getting over 1000 calls a week relating to CCSVI. They are doing numerous Dopplers every week at no charge. Unfortunately, they are not able to accommodate everyone who wants to be tested and they now have a long waiting list.

Considering Dr. McDonald's decades of vascular surgery experience, his significant experience as medical director of a vascular imaging lab and the fact that he has more experience and knowledge of CCSVI than any other Canadian doctor, why in the world wouldn't CIHR panel at least want to hear from him?!?

I think it's clear Dr. McDonald is not doing this to make money. He's doing it because his experience has shown him that CCSVI helps people with MS. I know he's incredibly frustrated at the barriers he is facing.

I had the opportunity to spend a short time with Dr. McDonald. I found him to be intelligent, professional, respectful. humble, gentle, compassionate--and determined.

I thanked him and asked why he is doing everything he's doing. Dr. McDonald's reply was short and simple: "Somebody has to do it."

I don't know if anyone knew this but there was an IR or vascular surgeon from Sunnybrook hospital in Toronto who was a virtual attendee with Drs. Simka and Zamboni at the parliamentary subcommittee meeting. As I recall his take was "so what are we waiting for?". I would have expected the CIHR would be glad to hear from him and he would have helped with Canada-wide Liberation studies. I got the impression he was quite impatient with the need for studies. At that meeting, like the take-note debate in Parliament, the 'MS' Society's evil message seems to have been the only one that eventually was listened to by the CIHR, though, at that time, they were pretending to listen to others, when they said: go ahead and apply for the money. I doubt the Doctor from Sunnybrook got very far with his application. I bet the announcement made it to him just after the due date for applications. That's when I received it.

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