1:58 AM on 5/23/2012
The vast majority of the comments here are written by members of a pro-CCSVI lobby who are angry after last week publication of the FDA warning concerning CCSVI. They are actually looking for a scapegoat and they choose Dr Rubin.
FDA is a governmental agency established to protect the US population by assuring that new treatments have proved good efficacy over the risks associated with them. Contrary to Canada, CCSVI has not been well covered by major media in the USA since 2010. The majority of patients treated by the private clinics offering venoplasty in the USA are Canadians.
In its warning, the FDA just stated there are still a lot of unanswered questions about CCSVI. As long the efficacy is not clearly proven, even a small risk is not acceptable outside research protocols.
FDA is an independent organization not influenced by Big Pharma, Canadian neurologists or Dr Rubin. Its position is just confirming the lack of good science for offering venoplasty now to MSers.
1:01 AM on 5/23/2012
A funny thing happened on the way from my HS graduation to my senior years. Some brainless person decided that failure was a traumatic occurrence that children should not have to endure. As a consequence, kids who failed were passed anyway. To further relieve the failure rate, things like logic and history went the way of the dinosaur. Unlike the real dinosaurs however, failures did not turn into black gold. They went on instead to run our country into the ground and they took our enviable medical care and turned parts of it into a bad joke and they called this joke MS neurology and Big Pharma. Together, for money, they systematically destroyed lives as surely as if they had riddled those lives with bullets.And that old expression, "Those that can. do; those that can't teach" went from being a put down to the rule of the day. And that, my dears,is how we happen to have the likes of Dr. Barry Rubin writing his trashy pulp fiction and calling it science.
10:53 PM on 5/22/2012
I think that it would be one hell of a co-incidence for MS plaques to just follow the pattern of the veins (like a dot to dot picture in a child's coloring book); I think it would be quite the co-incidence for there to be a vein in the middle of each MS plaque; and a really big co-incidence it would be for the plaques to run counter-current to the veins. Oh look; there's a deposit of iron beside each plaque. Do you know what? None of this is co-incidental! Kirsty Duncan is being very generous with you naysayers to even allow for any experimentation at all. There's well over enough evidence for this procedure to be put into practice NOW.
10:50 PM on 5/22/2012
I believe Kirsty Duncan's main point was that the CIHR did not invite people such as Dr Sandy McDonald because of potentially biased views. (McDonald is one of only two Canadian doctors who has actually (sucessfully) performed the CCSVI treatment procedure). So if we cannot have an actual expert on the panel because of potential bias, why should we have a non-expert on the panel who is overtly biased?
A true scientist questions everything.
9:27 PM on 5/22/2012
One more comment..just follow the money this is what is dictating the comments from these so called doctors in this article...they should lose there license to practice...kirsty Duncan has had to put up with many road blocks but thankfully she has more brains than any of these so called doctors and she is fighting this for the right reasons...anytime these so called experts make a untruthful opinion it shows who they are and who they are puppets for.
9:21 PM on 5/22/2012
.Rubins comments are irrelevant they are not factual ...the facts about the deaths are they were due to incompetent and in my opinion misconduct on behalf of the Canadian doctors who slammed the door in these patients faces.if I could I would inject these people with ms and tell them to take gilenya and don't you even think of angioplasty...the CIHR is a farce it is packed with doctors who have financial interests in not seeing this as a proper clinical trial...the biases have to be removed and full transparency is being demanded...by all Canadians....if this can't be achieved then just drop this clinical trial...kirsty Duncan should be commended for what she has done to date ...shame on all of you that have lied.
8:43 PM on 5/22/2012
Methinks they doth protest too much! They are spending so much time and energy and money trying to disprove this treatment. Instead of worrying about CCSVI being the cause of MS let us have this as treatment for our symptoms. This really is a vascular issue and the neurologists must get over that fact. This is a safe procedure , in fact it is done safely in heart patients and dialysis patients daily in Canada. It is perfectly safe for them therefore it is perfectly safe for MS patients. I have had it done twice and has greatly helped my MS symptoms. No drug has ever given me such symptom relief and great quality of life. We deserve this treatment just as much as a heart or dialysis patient.
8:26 PM on 5/22/2012
I honestly can't believe either of these men have the title of Dr. they have no understanding or compassion for what any MS patients have lived through the mis-information and prescribing of poisons is absolutely criminal. Patients are now their own advocates for their health because of the incompetence of medical professionals put in charge, I'll take my IR over any neurologist opinion. CCSVI is a disease of it's own and should be treated as such Every Canadian deserves proper blood flow it makes a real difference I know personally for a fact!!
8:10 PM on 5/22/2012
CCSVI Guy is absolutely right. The groups holding back the study of CCSVI in Canada are CIHR and some angry neurologists. But let's not forget the pharmaceutical companies. Those who live off MS make a very good living. One has to wonder what Barry Rubin is getting out of all this.
7:58 PM on 5/22/2012
Thank GOODNESS MP Dr. Kirsty Duncan has the guts and brains to hold Dr. Rubin and Dr. Beaudet accountable. Thank GOODNESS Duncan has attended many International CCSVI Conferences, when Rubin and Beaudet have not attended even one! Scientific study results have often been released up to two years ahead of publication, and Duncan has been in attendance at multiple conferences to witness results of the studies being made public. Because Beaudet and Rubin have not attended the International CCSVI Conferences, their information is often two years behind. Thanks for giving voice to both sides of the story, Mr. Butler. Let Canadians decide who they can trust.
7:30 PM on 5/22/2012
Wow, 1 person died, one had a stroke. What about the many more than that who have died after Gilenya was approved and prescribed? What about all that have had terrible problems from taking Tysabri? How can they condone doling out drugs that cause terrible problems - even death, while condemning the Liberation treatment? Seems like the pocketbooks of large drug companies speak very loudly!
Let me clarify...I do not in any way intend to trivialize the death of the one person and the stroke of the other person after the CCSVI treatment. It just smacked me in the face that these yahoos are using 2 cases to condemn this treatment, rather than say anything about the very many of us that have been helped by this treatment! Yet, they continue to try to drug us with drugs that have killed or damaged many more people than the CCSVI treatment. What hypocrites!
7:28 PM on 5/22/2012
Dr. Rubin and Dr. Beaudet have forgotten the first rule of science - remove bias. Thank goodness for Kirsty Duncan who continues her advocacy for CCSVI based on rational, science-based evidence. Dr. Rubin should never have been included on the CIHR "expert" panel he is not an expert in CCSVI and is a CCSVI naysayer. The ethical action would be for Rubin and his protector Beaudet to remove themselves. Dr. Rubin must explain why balloon angioplasty for CCSVI is so dangerous but Tysabri, which has been linked to 49 deaths, and Gilenya, which has been linked to 11 deaths are acceptable. Dr. Rubin needs to explain why renal denervation is acceptable when the international jury is still out on its safety and its effectiveness.
In addition, there have been over 30,000 CCSVI treatments performed in 60 countries around the world. That is not faith healing, that is reality.
7:18 PM on 5/22/2012
I recommend viewing this documentary on CCSVI. http://www.youtube.com/watch?v=Jikh7O8nr_E
There are sources of credible information where all of the studies can be viewed (positive and negative).
May I suggest consulting this page (the articles databank of CCSVI research). http://www.ccsvi.org/index.php/componen ... ask=search
The MS Society of Canada tends to only publish information that suits them. They give a one-sided view of everything, whereas the CCSVI Alliance gives you the entire story - positive and negative research.
In Canada, you can also go to the National CCSVI Society for credible information. http://www.nationalccsvisociety.org/
7:12 PM on 5/22/2012
Positive CCSVI studies on the safety of the treatment.
1. U.S. Study - "Safety of endovascular treatment of chronic cerebrospinal venous insufficiency: a report of 240 patients with multiple sclerosis" published in the journal of Vascular Interventional Radiology - Pub Med reference http://www.ncbi.nlm.nih.gov/pubmed/22088659
2. Polish Study - "Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe?" published in the international review Phlebology - Pub Med reference http://www.ncbi.nlm.nih.gov/pubmed/21107001
3. Bulgarian Study - "Safety profile of endovascular treatment for chronic cerebrospinal venous insufficiency in patients with multiple sclerosis." Published in the Journal of Endovascular Therapy, Pub Med reference - http://www.ncbi.nlm.nih.gov/pubmed/21679067
The only thing preventing science from moving forward in Canada are a few neurologists and the CIHR.
6:55 PM on 5/22/2012
Perhaps the Ottawa Citizen can investigate how Dr. Rubin got his renal denervation experimental procedure approved by Health Canada yet, angioplasty to correct vein abnormalities is highly resisted. Is there favouritism in the system?
Perhaps Dr. Rubin can tell us how many CCSVI conferences he has attended yet finds the time to call CA doctors when the rare, few unfortunate events occur.
Perhaps Dr. Rubin can speak for himself and explain how his article is not a conflict of interest.
Dr. Beaudet, perhaps you need to look at your statement that you ensure that your committee members do not have conflict of interests. Do you have MS neurologists on your committee? I can guarantee you, you Sir, have conflicts of interest.
Your committee cannot see beyond this "faith healing" and their own interests.
Finally, perhaps the experts in testing and treating CCSVI can be named that are in the expert panel.
6:17 PM on 5/22/2012
Re:Dr. Rubin - sounds like me that the man speaks out of both of his two faces.
Re: The FDA - Isn't this the same FDA that approved the use of Tysabri for MS patients - the same Tysabri that has killed more than 100 of them? The same FDA that has approved all the various cancer drugs that have done little to help without darn near killing patients but refuse to approve Dr. Burzynski's cancer treatment that works??
In my opinion, they are all bought and paid for by Big Pharma and that makes them less than useless.