Dr. Burks at ISNVD

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Dr. Burks at ISNVD

Postby Cece » Sat Feb 18, 2012 11:27 pm

from twitter
Anne Kingston
Dr. Jack Burks calls for rigorous "science" into #CCSVI and then compares it to flying saucers at #ISNVD.
Anne Kingston
Debate heating at #ISNVD over #CCSVI with Drs Hubbard and Burks on stage. Only point of agreement: need for double blinded placebo trials

Flying saucers! That's worse than cowboy talk.
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Re: Dr. Burks at ISNVD

Postby Robnl » Sun Feb 19, 2012 3:41 am

Hmm, thought i saw little green men while i had venoplasty :lol:
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Re: Dr. Burks at ISNVD

Postby erinc14 » Sun Feb 19, 2012 9:21 am

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Re: Dr. Burks at ISNVD

Postby Cece » Sun Feb 19, 2012 9:33 am

that explains the advanced technology (ivus, angioplasty)!
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Re: Dr. Burks at ISNVD

Postby Shayk » Sun Feb 19, 2012 9:51 am

I watched several segments of the ISNVD Patient Day webinar (which was excellent IMO) and I clearly understood that Dr. Burks was in fact quoting another prominent neurologist (unnamed) who recently asked "Should we fund a study to rid the world of flying saucers?" Dr. Burks reference to "flying saucers" was within the context of describing how many neurologists perceive CCSVI, i.e., that it doesn't exist.

In fact, IMO Dr. Burks is one of the rare neurologists who is willing to engage in a discussion of CCSVI and we should applaud him for that. He demonstrated a clear desire to increase collaboration among CCSVI advocates and neurologists in order to move research forward.

Here's some info on Dr. Burk's perspective on CCSVI from way back in 2009 He's supported more research from the very beginning.

I suggest we strive for improved accuracy in reporting.

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Re: Dr. Burks at ISNVD

Postby Lyon » Sun Feb 19, 2012 10:06 am

That makes more sense of the situation, thanks Sharon. Burk has been one of the few receptive neuros and it seemed that he must have really soured to ccsvi to start throwing flying saucer comments out there.

I only signed up for twitter today and don't know what I'm doing. It seems I'm skipping to various people's posts who don't really explain anything in detail but I also saw mention of Burk using the term "Snake Venom", what is that referring to?
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Re: Dr. Burks at ISNVD

Postby Lyon » Sun Feb 19, 2012 10:07 am

20 hours ago, national ccsvi society.
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Re: Dr. Burks at ISNVD

Postby Cece » Sun Feb 19, 2012 10:09 am

That does seem to be a distinction worth noting. I have never seen Dr. Burks talk and I missed the webinar and I'm not at ISNVD!

Here's the other twitter report that casts Dr. Burks negatively:
Nat'l CCVSI Society
Things heating up at the doctors' roundtable...Dr. Burk keeps mentioning snake venom. #CCSVI #ISNVD #MS
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Re: Dr. Burks at ISNVD

Postby Shayk » Sun Feb 19, 2012 10:23 am

I didn't see the doctors' roundtable, but in his presentation, Dr. Burk tried to convey why many neuros dismiss CCSVI and we've heard it many times, i.e., that they've seen many fads in MS come and go, i.e., snake venom, bee stings, etc. (he had a list of more on his slide) and many neurologists see CCSVI as just another fad of the same ilk.

On another note, Dr. Burk was very clear that while he does not recommend intervention for CCSVI outside of clinical trials he seeks the very best experienced IRs for his patients who want to pursue it.

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Re: Dr. Burks at ISNVD

Postby Cece » Sun Feb 19, 2012 10:52 am

https://twitter.com/#!/ccsvi_society
Here are twitter posts from Nat'l CCSVI Society recounting Dr. Burks' position yesterday:

Dr. Burks: "I know the toxicity of Tysabri, but I don't know the toxicity of CCSVI because there are no published studies"
Dr. Hubbard and Dr. Burks agree that there must be a double blind placebo controlled trial
Dr. Hubbard: "I'm not just a neurologist, I'm a dad." Dr. Burks: "I'm not ready to recommend CCSVI treatment."
Dr. Burks: only have data on 120 patients out of maybe 30,000 possible CCSVI treatments. "Let's do the studies"
Dr. Burns: neurologists won't pay attention unless data is published. They think CCSVI will go away if ignored
Dr. Jack Burks: Neurologists are not on same page. Need to come together. ECTRIMS full of animosity towards CCSVI

I've never been a fan of twitter...perhaps because of my own verbosity...but what a resource it is for ISNVD updates!

It is not a surprise that the neurologists at ECTRIMS were full of animosity but it is a disappointment. I believe we had a CCSVI researcher submit research with positive results to present at ECTRIMS, and he was turned down. I note that neurologists are welcome at ISNVD but that interventional radiologists were not welcome at ECTRIMS! So what can the IRs do about the 'need to come together' unless neurologists are receptive to that as well?

Dr. Hubbard and Dr. Burks agree that there must be a double blind placebo trial, but we just had Dr. Langley at Ms. Judy Butcher's OHIP appeal say that not all treatments funded by OHIP go through double blind trials. It is a drug model, not a surgical treatment model. Dr. Burks talks about the toxicity of Tysabri as compared to the unknown 'toxicity' of CCSVI treatment, but isn't toxicity also a drug term?

And to the neurologists thinking CCSVI will go away if ignored, I would say that waiting for it to go away simply leaves them on the sidelines!
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Re: Dr. Burks at ISNVD

Postby Cece » Sun Feb 19, 2012 10:56 am

from the same twitter feed
Neurologists are blocking access to IRB approval, yet they claim they need to see published research (papphrased fr Dr. Dake)


http://soundcloud.com/ccsvi-toronto/dr-burks-at-isnvd
A sound clip of Dr. Burks talking at ISNVD, including the flying saucers line....
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Re: Dr. Burks at ISNVD

Postby Cece » Sun Feb 19, 2012 7:27 pm

And here's the full transcript of what Dr. Burks had to say.
https://www.facebook.com/notes/amy-gayl ... 3269303191

I would like transcripts and audio clips of all the other speakers too now please pretty....

I believe, and most neurologists think this is going to go away. It’s going to go away like “bee sting” and “snake venom” and everything else.
But okay here are the questions that we ask: Does CCSVI exist? We, most neurologists, don’t think it exists in spite of all the data you are going to hear here, none of it….
There’s been over 100 breakthroughs of MS in the 40 to 50 years that I’ve been doing this, forever, and not one has survived scientifically, not one.

and another tweet of things Dr. Burks said, passed on by the National CCSVI Society:
Dr. Burks: Neurologists need to know if CCSVI is a disease modifying, symptom management, or quality of life therapy

But those are all about MS. CCSVI venoplasty is a treatment for CCSVI. The CCSVI symptoms that lifted after my treatment were well worth treating in their own right. Fatigue, vision issues, color impairment, balance, cogfog...these cannot be claimed as MS symptoms when they can be caused by cerebral outflow obstructions and relieved by treating those obstructions.
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Re: Dr. Burks at ISNVD

Postby Cece » Mon Feb 20, 2012 3:02 pm

http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf
SUNDAY – FEBRUARY 19, 2012 11:45am-12:00pm
Bringing neurologists into the CCSVI arena (Jack Burks, USA)

Why are many neurologists so resistant to CCSVI? They believe the theoretical basis of CCSVI is flawed. The
diagnostic test results are not consistent. One study says CCSVI is correlated 100% to MS while another study
says no correlation to MS. “Should we fund studies to get rid of flying saucers?” The clinical trials are not
scientifically meaningful and do not have acceptable “follow-up” which leads to patients’ false hopes, financial
hardship and serious adverse events, including death. Interventionalists are “getting rich” from desperately ill,
financially strapped patients who may become disenfranchised from their neurologists for not supporting
CCSVI. Many neurologists believe CCSVI is touted to MS patients as providing “liberation” from MS. While that
is unrealistic, angioplasty may be helpful to some patients. If CCSVI exists, treating the vascular factor may
improve MS symptoms and Quality of Life. In early RRMS, it may help more. On the other hand, the positive
reports may represent a placebo response. Scientific data through collaboratively planned and implemented
research will provide many answers and put CCSVI into better perspective. Working in isolation will prolong
the “battle”. If collaborative research projects are positive, the procedure will gain wide acceptance and
insurance funding.
If negative, we have saved patients from the medical disappointments and financial drain.
Specific ideas will be presented Wednesday.

Not all of this is objectionable. But in the interest of lowering animosity, Dr. Burks and the other neurologists might consider toning down the colorful language. I hear it on the interventionalists side as well, although not as heated. "Now you sound like a neuro" is not flattering to the neurologists, but not in the same way as "studying CCSVI is like studying flying saucers" is to the interventionalists, or accusations that the interventionalists are in it for the money. We've heard it here too among supporters and nonsupporters in the forum. It is the absence of facts that makes the language and metaphors and opinions run so wild.

I am in favor of collaborative research between any interventionalists who are willing and any neurologists who are willing to step up instead of waiting for CCSVI to go away.

And this is to come, on Wednesday:
CCSVI Clinical Trial Design from a Neurologist’s Perspective (Jack Burks, USA)

In Sunday’s talk I discussed the opportunity for a collaborative approach to designing and implementing
scientifically rigorous research to put CCSVI into perspective. For most neurologists, they do not know what to
think of CCSVI except over 100 other “breakthrough treatments” for MS have reached this stage of patient
interest – and none have been successful over time. Therefore, to get involved, most neurologists are insisting
on scientifically sound data as well as a halt to the commercialization (charging patients for angioplasty) on
desperately ill MS patients. Legitimate clinical trials should precede “fee for service”. Further, much CCSVI data
at neurology meetings are negative, i.e. CCSVI does not exist. “Why should we fund studies to get rid of flying
saucers?” Most believe CCSVI will naturally go the way of snake venom and bee stings. However, collaborative
efforts are gaining attention from some neurologists. The next step is developing a trusting collaboration
between Neurologists, CCSVI Diagnosticians and Endovascular Interventionalists. This also might include
patient groups, immunologists, iron metabolism experts, other health care professionals, MS advocacy groups,
and other interested parties. A format: A multidisciplinary steering committee convenes a conference entitles
“What do we really know about CCSVI and MS - and how can we put CCSVI into a scientific and clinical
perspective through more scientific research?” Six questions will begin the collaborative process. 1) What data
do we agree are known facts about CCSVI and MS, based on solid scientific data? 2) What postulates do we
think might be true, but lack solid scientific data? 3) What postulates do we agree are not known? 4) What
research is needed to fill the knowledge gaps? Prioritize these issues. 5) What are the roles of each
collaborative group in implementing the research designs and clinical trials? 6) How can the research be
funded? With this approach, scientific data will drive the CCSVI success – or not.

Financial Disclosure: Acorda, Allergan, Avanir, Bayer, Novartis, Serono, Sanofi-Aventis

If it is correct that what's slowing CCSVI research more than anything is the lack of neurologist collaboration (as Ms. Kingston reported Dr. Sclafani saying and Dr. Zivadinov agreeing), then we need to understand the neurologist perspective. Objectionable though it may be. To get involved, neurologists are insisting on a halt to the commercialization? I think that one is out of the barn and not coming back. Commercialization of CCSVI took off in the summer of 2010. If a multidisiplinary steering committee were to come into being, would the neurologists participate in forward movement, or would it be a way to block research into CCSVI, if neurologists are indeed just waiting for this all to blow over? And, indeed, how can the research be funded? Acorda, Allergan, Avanir, Bayer, Novartis, Serono, or Sanofi-Aventis would not have any interest. What if the only trials that are financially feasible are smaller trials? Would there be neurologist cooperation? The next step is developing a trusting collaboration! How can he even say that after slinging words like flying saucers around, and talking about IRs getting rich off of the desperately ill? Those are divisive words, not coming-together words.

more thoughts from neurologists on what their problem is:
Audience member: Gap needs to bridged between abnormalities and plaques in the brain to convince neurologists
Neurologist in audience: hard to engage neurologists when definitions not agreed upon
daniellerheumetwitter wrote:Neuro Jack Burks: "I am so embarrassed that we (neuros) have not been more open to this (CCSVI)."
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Re: Dr. Burks at ISNVD

Postby Cece » Wed Feb 22, 2012 6:20 pm

More from Dr. Burks, relayed by Arlene Hubbard of the Hubbard Foundation:
https://www.facebook.com/pages/Hubbard- ... 9665829860
Dr Burks
A cCcsvi clinical trial design from a neuros prespective
Until the doctors prove it we can’t recommend it. Resentment by neuros because the IR’s are advertising without the proof and they are promoting themselves.
Dr Burks said he’s embarrassed by the neuros not taking more of an interest.
All the scientists are saying we need more research but the neuros think the IRs are pushing treatment without the proof
The media has made neuros look very negative
How should we do more science and how can they be more collaborative.
*The neuros want to keep “ducking” but now we need to address the issues.
We need to start a group, neuros, irs, patients with the help of CCSVI alliance and people that design studies etc
Format for this group: multidisciplinary steering committee
Conference on:
What do we really know aboutCCSVI and MS
What data do we agree are known facts about ccsvi and ms based on solid scientific data
What postulates do we think might be true but lack solid scientific data
What postulates do we agree are not known
What are the roles of each collaborative group in implementing the research designs and clinical trials
How can the research be funded

We need to take this to NIH and they will fund this conference, we create a white paper then studies will get funded
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Re: Dr. Burks at ISNVD

Postby marcstck » Wed Feb 22, 2012 10:24 pm

If it is correct that what's slowing CCSVI research more than anything is the lack of neurologist collaboration (as Ms. Kingston reported Dr. Sclafani saying and Dr. Zivadinov agreeing), then we need to understand the neurologist perspective. Objectionable though it may be. To get involved, neurologists are insisting on a halt to the commercialization? I think that one is out of the barn and not coming back. Commercialization of CCSVI took off in the summer of 2010. If a multidisiplinary steering committee were to come into being, would the neurologists participate in forward movement, or would it be a way to block research into CCSVI, if neurologists are indeed just waiting for this all to blow over? And, indeed, how can the research be funded? Acorda, Allergan, Avanir, Bayer, Novartis, Serono, or Sanofi-Aventis would not have any interest. What if the only trials that are financially feasible are smaller trials? Would there be neurologist cooperation? The next step is developing a trusting collaboration! How can he even say that after slinging words like flying saucers around, and talking about IRs getting rich off of the desperately ill? Those are divisive words, not coming-together words.


Who would fund the trials? How about the medical device companies that are hard at work developing vein specific instruments? Or some of the IR's that are doing procedures on hundreds or thousands of patients, generating millions and millions of dollars? There's enough money on both sides of the equation these days for those profiting from CCSVI to start funding some studies. The pharmaceutical companies fund studies that they think have profit potential. CCSVI has proven to have profit potential in the interventional radiology arena. From a strictly scientific standpoint, you would think that the scientists involved in treating CCSVI would be hyper interested in long-term outcomes. Instead, most are only doing limited, if any, follow-up.

Granted, the Neuros need to get on board, and take part in studies, but with the amount of money CCSVI is now generating funding shouldn't be a problem. I believe one of the presenters said that he had done 2000 procedures. At $10,000 a pop, he's grossed $20 million treating CCSVI. Just saying…
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