New CTV piece online now

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

Postby CureIous » Sat Apr 10, 2010 9:20 pm

eric593 wrote:
CureIous wrote: For a teensy tiny percentage, going where the treatment is, the rest without resource diligently banding together, networking, sharing information and helping each other


Please don't assume that everyone who hasn't "run off" for treatment doesn't have the resources for it. Many of us prefer local doctors in case problems arise. Some of us need more evidence than anecdotal reports of vague symptom improvements before we are prepared to undergo treatment. Money doesn't have anything to do with it for many of us... Managed care and evidence are more important to some of us.


Didn't say "run off", your words not mine.

I was countering the broadbrush with a bit more nuance, you've nuanced it further, we could nuance beyond that to, to no end. That's kind of the point, you prefer to stay local, for more follow up options and nearby expertise. Wonderful, go with God. Some are choosing differently, they deserve the same consideration as you. Just because someone paints a particular action in a certain way, don't make it so. Still like to see exactly where the hysteria is.

Fact is the travelers as a subset of the MS pop. at large are a relatively tiny %, and it is unfair to also start categorizing based on a small %, irrespective of whether one agrees or disagrees with that modality, which is another issue entirely.

Lobbing the semantics ball back to your side.

Mark

p.s. and you are correct, my wording "and the rest" is overly inclusive, I retract my badly worded sentence and say, "for others". And that's also not to assume that everyone that is aware, is interested in getting treated in the first place, or is in any particular rush.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Johnson » Sat Apr 10, 2010 11:50 pm

eric593 wrote:Rokkit, I agree. Freedman would probably like to start his MSS-funded research off by taking his EAE mice and proving they don't have stenoses...


That was a good snicker...

Kind of hard to seem calm as a cucumber in front of the camera when you are aware, as someone already mentioned, the audience is going to be scoffing and throwing shoes at the tv when you're on


I don't know... If I believe implicitly in my stance on something, I don't give a flying fig what others think. But, I have been called some choice names in my past.
My name is not really Johnson. MSed up since 1993
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Postby Jugular » Sun Apr 11, 2010 9:26 am

eric593 wrote:Rokkit, I agree. Freedman would probably like to start his MSS-funded research off by taking his EAE mice and proving they don't have stenoses, thus refuting CCSVI as a theory (of course the mice wouldn't have CCSVI since EAE is NOT nor has it ever been an adequate representation of human MS).


Ha ha. This is so true. Dr. Freedman needs to spend less time trying to torpedo Zamboni's research and more time reflecting on how much his own pet MS model is built on junk science. Better yet - he should go over his own research with this new lens to see where it leads. This is how discoveries happen. There is no greater enemy to science than a closed mind.

What I enjoyed the most about this W5 instalment, however, is the light it shone on Dr. Franz Schelling and his frustrating 30 year struggle to have someone pay attention to his theories on blood flow and MS. He came across as an intelligent and compassionate man. Disheartening and maddening is how I would describe his dossier of “Sorry, MS is an autoimmune disease” research rejection letters. But I did enjoy the part where Dr. Schelling is shown at last enjoying a beer alone outside a sidewalk Austrian cafe.

I'd like to have bought him that beer.
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Postby Vhoenecke » Sun Apr 11, 2010 9:41 am

I am so very thankful for CTV, I know they could have spent a whole hour on that piece as I am sure they had to do a lot of editing. It was great that they give all sides a chance to speak. I'm sure we all seemed to be impressed with Dr. M vs Dr. F.
My husband couldn't believe how bad Freedman looked. A person watching the program not knowing anything about MS would have thought it nonsense what Dr. F. was saying.

Nothing to do with MS why would you get it fixed? WHAT?

You are right if he had blocked veins they would be fixed.

Go Canadian broadcasting for not letting Pharma decide what goes on TV!!

Val
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Postby mangio » Sun Apr 11, 2010 9:53 am

Heh Lyon just so it's clear, my feeling is this. His voice and ideas are but one, not the only one. And I certainly do think anyone with this hope of
a new treatment avenue is not militant or hysterical. The risks are
well written about and so are the potential benefits.

The scientific community globally has had plenty of support and funds
to advance new treatment ideas for many years I just want the
same energy and time devoted to the vascular connection.

I have my doubts but most importantly I have hope that we can
really help people with this new approach. Having our heavy weights
try to dim those aspirations is extremely disheartening.

30 years of rejection of a new concept in this vain is not acceptable
to me anymore. Without the tremendous nudgeing on so many fronts,
CCSVI would probably still be vaguely known.

Even if only a small handful of people can be helped I feel it's worth
the effort many times over.
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Postby cheerleader » Sun Apr 11, 2010 10:08 am

When we started this whole journey, Marie (mrhodes) hipped me to the phrase "cognitive dissonance." She had been reading the research of Prineas, Barnett, Chaudhari and all of the neuros who were stating MS was not autoimmune, and that the EAE model was flawed. And she knew what type of reactions they were receiving from mainstream medicine.

What Is Cognitive Dissonance?

In 1957, Leon Festinger published a theory of cognitive dissonance, which has changed the way psychologists look at decision-making and behavior.[1] At its heart, cognitive dissonance theory is rather simple. It begins with the idea of cognitions. Cognitions are simply bits of knowledge. They can pertain to any variety of thoughts, values, facts, or emotions. For instance, the fact that I like ice cream is a cognition. So is the fact that I am a man. People have countless cognitions in their heads.


http://www.beyondintractability.org/ess ... issonance/

I think the doctors who have been working with the EAE model had to embrace the notion that this was IT. In order to proceed with all of the thousands of dollars and hours and energy expended, they had to banish any other potential theory.

The idea that MS has a vascular genesis is such a conflicting notion, that it cannot exist and must be annihilated. Not because it is wrong, but because it creates such dissonance.

Vascular doctors, interventional radiologists, patients and caregivers do not have any pre-existing cognition regarding MS. We're kinda blank slates.

Anyhoo...I loved seeing Dr. Schelling in his library in Austria. When we were in Bologna, we stood together and studied the gorgeous hand painted frescoes on the wall of the Stabat Mater room--where the seminar was being held. "Look up there, Joan"...he pointed above the conference table. "The Mother and Child are watching over us." Big grin.
Great reporting from CTV-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Sun Apr 11, 2010 10:13 am

I thought it was better than the first piece!
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Postby magoo » Sun Apr 11, 2010 10:21 am

Great reporting! Well balanced and very informative! Bravo to CTV for the continued reporting of the facts!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby AMcG » Sun Apr 11, 2010 10:33 am

This is the first time I had seen Freedman too so I was willing to have my preconceptions overturned. But he gave the game away when Avis suggested his own suggestion back to him that there should be a 'blinded' procedure involving venography but no treatment. He immediately rejected his own suggestion saying you must prove the link between MS and CCSVI first. This is a ridiculous viewpoint. He performs stem cell research but it is not based on any proven link of something causing MS. It is based purely on speculation about how MS works. It is no more based on a proven theory than CCSVI is. As there is no proven cause of MS you could say the same about any treatment. Of course what he leaves unsaid speaks as much about him. He never seems to consider the reports of the increasing numbers of people who have had the treatment. Or accept that there have been published papers supporting vascular based treatments for CCSVI around for a long time. That is poor science and poor doctoring. Not being aware of relevant research is a fault. Ignoring a source of evidence which could easily be investigated and systematised is not good science it is being pig-headed. I could go on but it is getting me annoyed again. But I must put it plainly. Scientific method can include a lot of different design paradigms. Nit-picking double-blind procedures with perfectly matched controls are necessary for investigation when you are trying to pick out very small effects which could easily be swamped by noise or a placebo effect. I challenge Freedman to justify such an experimental design when the effects being studied are as large as they are here. He knows this but expects to be able to pull the wool over our eyes. I would have liked it to be otherwise but his apparent reasonableness is false. He is a wrong-un.
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Postby PCakes » Sun Apr 11, 2010 10:33 am

.. i so envy the mind of a 'wordsmith'.. you really should write.
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CTV

Postby Gordon » Sun Apr 11, 2010 10:45 am

First Congratualtions and a big thanks to CTV. I was a little underwhelmed by the program, but in hindsight it was well balanced, like Chearleader said.

I tnink that they accomplished a couple of things

1.0 They made Freedman look like an idiot. "Why fix something that is not broken"

2.0 Surgery is taking place in Canada, at least the foot is in the door. Now False Creek is ramping up.

It should be an interesting couple of weeks.

Gordon
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One more accomplishment

Postby Gordon » Sun Apr 11, 2010 10:48 am

CTV and the Barrie Ontario doctors clearly showed that the angioplasty procedure is a very safe treatment.

Gordon
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Postby Jugular » Sun Apr 11, 2010 11:03 am

I agree with Cheer, it's funny how "cognitive dissonance" can turn an "encouraging result" into a "placebo effect" and scientist against the very people they are supposed to serve. Good thing we have the likes of Dr. Freedman to protect us from ourselves and our own fragile, suggestible minds.

That young man practically ran up and down the stairs that he could hardly scale before. If that's a placebo effect, then pass me down that placebo bottle. Because I just can't seem to will myself out of this disease.
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Postby Lyon » Sun Apr 11, 2010 12:03 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:00 pm, edited 1 time in total.
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Postby bretzke » Sun Apr 11, 2010 12:04 pm

Here's a link to a CTV report about Dr. Freedman from 2009. It talks about his MS research and how one of his test patients was "cured" by his stem cell procedure. It also talks about the patient who died during his experiment.
<shortened url>

Notice Dr. Freedman's eyes during the stem cell report and compare them to his eyes during the CCSVI report.
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