New CTV piece online now

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

Postby eric593 » Sun Apr 11, 2010 12:28 pm

I'm a little confused. The first guy on W5 - Steve(?). Favaro said that he need a walker because of balance issues and because he had numbness in his left hand and foot. Yet after his procedure, he asked the nurse to shake his hand because now he could move them even though his hand used to be "useless". He also said he could move his toes on his left foot afterwards.

But numbness/sensory issues have nothing to do with MOVING your limbs since that's not sensory, it's motor.

So did he have sensory issues before like they reported or did he have motor problems like he reported were improved afterwards but no mention of having motor problems before treatment?? It was inconsistent to me.
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so where is it?

Postby codefellow » Sun Apr 11, 2010 1:11 pm

Where do I find the link to the "NEW" CTV piece if it is "online now"?

Thanks.
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Postby bretzke » Sun Apr 11, 2010 1:34 pm

Lyon wrote:
mangio wrote: The risks are well written about and so are the potential benefits.
I'm not sure what you're saying. "Potential" benefits is the correct term but it only means hoped for benefits. There are no proven benefits to CCSVI.


Lyon-

Like you, I'm a CCSVI/MS skeptic. May I join your club?

Whether Liberation will be accepted as a suitable MS treatment or just become another dead end will be determined in record time. Testing for blocked veins and arteries is accepted medical practice. Performing balloon procedures for narrowed veins and arteries is accepted medical practice.

Why does there seem to be such a strong association between CCSVI and MS? Docs in Poland say 95% of their MS clients had narrowings. Zamboni says 100%. Scalfani says 100%. Buffalo says more than 50%.

IRB's will be approved shortly in the U.S. I'm hoping to move from skeptic to believer, very soon.
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Postby mangio » Sun Apr 11, 2010 1:35 pm

Lyon I've enjoyed reading your posts immensely and feel I have
learned alot from them.

I feel confident that there is enough preliminary positive feedback from
the individuals that have had the procedure
to warrant more resources to help expediate this process.

Maybe this will end up being a very wasteful endeavour of researchers
time and efforts but we won't know that until more patients are scanned
and tracked.

The MS researchers here are funded largely by the tax payer
and private donations. Don't you want to have some say in this
process? And further what do you propose?
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Postby AMcG » Sun Apr 11, 2010 1:43 pm

A really interesting link. Thanks for posting it. I liked the patients' stories and the research is brilliant. But what I find really interesting is Freedman's avowed standard of proof (cf CCSVI). I find it amazing that the same man who insisted CCSVI is not proven as a treatment because there is only a small number of results and those are based on subjective reports says here that the unquantified evidence of ONE PERSON (Jennifer), unmatched to any control and with no effort to control any placebo effect is PROOF. 'Jennifer convinced me.'... 'If cure is long lasting remission. We are there!' Why does he not apply the same standard to CCSVI. Anyone want to volunteer to be the Jennifer for CCSVI?
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Postby cheerleader » Sun Apr 11, 2010 2:34 pm

bretzke wrote: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.


Thank you so much for this, bretzke. It seems that Dr. Freeman is willing to accept "death as a possibility" for patients in his studies. Yet a relative and routine procedure such as venous angioplasty is too dangerous. Can we see a clearer example of cognitive dissonance?
Oh, and my husband would love to play Jennifer for CCSVI...and I think there are about 300 other treated people who would do the same.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Apr 11, 2010 2:59 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:01 pm, edited 1 time in total.
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Great job W5!

Postby Hope66 » Sun Apr 11, 2010 3:18 pm

More excellent reporting W5. I can't thank yo enough for following up on this most important development.

Freedman??? Seriously? Did anyone else catch that at one point in the interview he talks about the placebo effect and states something to the effect that the improvements reported so far are subjective and that you must show that something is %50 effective, and that to prove something is effective you must go beyond that."

Hmmm...does he ever prescribe CRABS? My understanding is that they have been found to perform only slightly better than placebo (something like %33 as opposed to %30 placebo.).

Good grief.

Hope (yes PCakes, like the rubber tree plant ;)
-----------
Dx March 2003
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Postby Lyon » Sun Apr 11, 2010 3:38 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:01 pm, edited 1 time in total.
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Postby cheerleader » Sun Apr 11, 2010 3:56 pm

Why didn't Freedman have to give "sham" chemo to his patients for his immune ablation/stem cell treatment? Why no mention of placebo in his studies? Why no Annals of Neurology hit piece on the death of his patient (printing his name as a matter of public record without his family's permission) in a very dangerous, experimental, unproven treatment?

link
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Apr 11, 2010 4:19 pm

..
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Postby cheerleader » Sun Apr 11, 2010 4:27 pm

Lyon wrote: I'm not sure what your point is because you're comparing apples to apples.


Freedman's apples get funding....and he doesn't want to share.

Project Title:
Targeting Multiple Sclerosis as an Autoimmune Disease with Intensive Immunoablative Therapy and Immunological Reconstitution – A Potential Curative Therapy for Patients with Predicted Poor Prognosis MS

Funding:
$4 million over six years from the Multiple Sclerosis Scientific Research Foundation –
Approved August 2000

Principal Investigators
Harold Atkins, MD, Bone Marrow Transplantation Program, Ottawa Hospital – General Campus
Mark Freedman, MD, MS Research Clinic, Ottawa Hospital – General Campus

http://www.mssociety.ca/en/research/ste ... search.htm
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby eric593 » Sun Apr 11, 2010 4:31 pm

Freedman isn't b*tching and complaining about the failings of his own apples.
Last edited by eric593 on Sun Apr 11, 2010 4:33 pm, edited 1 time in total.
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Postby Lyon » Sun Apr 11, 2010 4:32 pm

..
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Postby bretzke » Sun Apr 11, 2010 6:03 pm

Lyon wrote:
bretzke wrote:Whether Liberation will be accepted as a suitable MS treatment or just become another dead end will be determined in record time.
I hope and I'd like to think that it's sensible that this will all be proven one way or the other in record time but we still don't have anything concrete to define MS so there isn't any flashing light that goes off to let us know when it REALLY has been cured.

I'd like to think that all the attention to CCSVI is going to insure that we have a yes or no answer soon but considering that it's MS we're talking about, all bets are off.


Lyon-

I haven't heard many folks claim that treating ccsvi is the CURE for ms. If liberation can be shown to be an effective treatment, I'm all for it. Current ms drugs are considered effective if they slow down progression 30% of the time. They don't stop progression, they just slow it down. If ccsvi treatment has similar success, I'll become a believer.

CCSVI is a stand alone condition. Trials could be conducted with no concern regarding the relationship with ms.

This snowball is rolling down hill and picking up steam. As long as enlightened patients keep up the pressure, we'll have an answer one way or the other, very soon.
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