This Is MS Multiple Sclerosis Community: Knowledge & Support

Beaudet's response as to why it's ok for Dr. Rubin to refer to CCSVI as faith-healing in a non-peer-reviewed published article while serving on the CIHR working group for clinical trials of CCSVI.

I wrote up a review of Dr. Rubin's research focus last year. He often works with Pfizer Global Research Department--he's not an IR, or phlebologist, or even a vascular surgeon researcher. He's a brilliant researcher studying bioactive phospholipids--to find pharmacological answers for those with heart and cerebrovascular issues. His main target is inflammation after ischemia, and his research may be applicable to MS. Why he was chosen for the CIHR panel in the first place is a valid question. The fact he has been an outspoken opponent of CCSVI research since 2009 should mean he is not suitable to be an objective member of this panel. His new opinion piece proves that his mind is made up. Kirsty Duncan is right.

https://www.facebook.com/notes/ccsvi-in ... 4601307211

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

As if signing a declaration makes all conflicts just disappear! It only contributes to transparency if somebody reads it. I would say the conflicts that are known appear to be genuine impediments to impartiality. I am glad this is at least in the Ottawa press. Access to information, anyone?

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

metro10

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.
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MSdragonslayer

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.
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Judy Butcher

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.
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Mossmanor

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.
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sandrah84

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.
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sandrah84

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.
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Maria Dekleer

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.
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Sandwhit

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!!
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Treated2011

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.
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AmyPreston

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.
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STReeves

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!
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Treated2011

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.
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CCSVI_GUY

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/
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CCSVI_GUY

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.
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ccsvitreat

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.
Silence.
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MSdragonslayer

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.

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

he's pathetic . but i'm sure he doesn't care .

There are the safety studies links, as posted in one of the posts brought over by 1eye.

Poland? Bulgaria? The Journal of Vascular Interventional Radiology? They don't count. And other available irrationalities.

Depends on what you look at, obviously. But even more it depends on the way that you see.
-Bruce Cockburn

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

Click here...

This is missing the real story. The paper/opinion-piece/biased-attack-ad-disguised-as-science which is the principle player in this story was the reason/excuse for the warning by the FDA, which was only mentioned briefly at the end of the Citizen article.

The attack was obviously full of little scientific gems such as 'faith-healing', and did not belong in a scientific journal. The procedure, though, has enemies in high places.

Not only should Dr. Rubin, as Dr. Duncan (the MP) says, not be entitled to participate on the CIHR panel, but his position on such a panel should have been a red flag in the US, that this author was capable of this kind of dirty pool, and should have been a reason not to take this non-peer-reviewed paper seriously.

The paper should never have been published, let alone used to justify a bad decision by the FDA. Its fall-out has been the curtailing of studies across the US, whereas the device the FDA is warning about is not only not implicated in any adverse events, but has been used for neck and other vein procedures for years without complaint.

Not without incident, just without complaint.

Why now? Perhaps, because this procedure is seen as a direct threat to the 10 Billion dollar market, not for all drugs, just for 'MS' drugs.

That is the story missed by Mr. Butler's article.

The Citizen article has also had its headline changed. Probably to make it juicier and perhaps draw some of the response seen here, the print version has acquired a headline of: "Zamboni MS treatment comes under fire." There is, as of yet, none of the indignant response you see here. Why not? Perhaps because the print version has wider circulation?

The Canadian Health Department has long been known to rubber-stamp anything the FDA does. Does this mean research in Canada is in jeopardy too, because of Dr. Rubin's conflicted involvement?

Indeed, a trial based in Saskatchewan is actually taking place in Albany, New York, because of the interference of Canadian Health authorities. Will it have to be moved to a third country?

It is one over which the FDA assumes authority, because it is a prospective, placebo-controlled research trial, and does not merely look back on data collected from medical procedures. It may be in jeopardy.

The same clinic probably interceded, by air ambulance, in 2010, when a terminally ill patient in Barrie had a procedure cancelled by Canadian authorities. If so, this ruling by the FDA may be a kind of payback, courtesy in part, of Dr. Rubin, for the one that got away.

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

And this morning the article appears again with the real headline "Zamboni under fire" on Stu's MS News and Views, *and* Yahoo news, where Stu got it. I feel somehow manipulated, or maybe it's just bad luck.

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

a simple question . How does anyone - including Dr.Rubin - come to believe and make a strong opinion - that CCSVI treatment does not help pwMS ..... WITHOUT first conducting some first hand observations . Such as is desired by a great many curious minds.

It's like saying the answer to a test is wrong ...... without going over the students work .

Either way .... Dr.Rubin should make a graceful exit ..... ASAP.




MrSuccess

I will restate:. Researchers are in an artificial bind, because neigh-sayers insist on placebo-controlled, randomized, prospective trials merely to establish safety. Safety has already been established in three CCSVI trials worldwide, ans who know how many trials of other venous procedures. These have been at the insistence of those who are in competition with interventional procedures of various kinds. These turf warriors know that drugs are a more reliable money stream and more long-term profitable.

But is a safety trial likely to be prone to placebo effects or double-dealing? No. The FDA, coincidentally, can only forbid prospective, randomized trials. The very ones being called for! Easy to demand and decry at the same time.

The safety has been established, and now science needs to be free to do what everyone has asked for: real, large, efficacy studies.

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

12:51 AM on 5/24/2012

In a recent article, Dr Michael Dake, the first interventional radiologist who performed venoplasty for MS patients in USA and one of the hero of the pro-CCSVI lobby arrived with the same conclusions than FDA about the importance of doing randomised controlled trials considering the risks associated with venoplasty http://vmj.sagepub.com/content/17/3/131.short

Do you think that Dr Dake is also part of the big conspiracy you are implying with by Big Pharma, the different provincial College of Physicians, Federal Government, the Canadian Medical Association, the Conservative Party, the BC Human Rights Tribunal, OHIP, CIHR and finally the FDA??



8:07 PM on 5/24/2012

Big Pharma, pulling strings of:
provincial Colleges of Physicians,
Federal Government,
Canadian Medical Association,
Conservative Party,
BC Human Rights Tribunal,
OHIP,
CIHR
FDA

Yeah, that's a pretty good list. Except you forgot the neurologists.




9:40 AM on 5/25/2012

And, by some oversight, could never have been deliberate: you forgot to include the many "MS" Societies all over the world. With that many people on my side, I must be a real winner. Except for the ten billion, and the parasitic greed-head scam at the top of the list. Is that enough dollars to reach the moon? I don't know, but it can reach a long, long, way. Maybe even into some people's veins.

But Dr. Paulo is not here. He is somewhere likely in Italy. maybe Ferrara.

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