MANDRYK: It's time to abandon liberation therapy

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

MANDRYK: It's time to abandon liberation therapy

Postby Cece » Wed Sep 11, 2013 1:50 pm

http://www.leaderpost.com/health/MANDRY ... story.html
But for the Saskatchewan government to want to continue to prove that liberation therapy is a miracle cure - especially in the face of a mountain of evidence to the contrary - is not terribly compassionate nor wise.

"Our priority is to try to find a similar type of study, but we're realistic to know that might not be possible," Health Minister Dustin Duncan told reporters Monday.

There is no mountain of evidence against ccsvi treatment efficacy. Ugh. At least Saskatchewan is looking for another similar study. It would be nice if that could be found!
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Re: MANDRYK: It's time to abandon liberation therapy

Postby msscooter » Wed Sep 11, 2013 10:01 pm

Siskin seemed to refer to several other clinical trials that are about to start in his interview with Sharon Richardson........ Dake's is still awaiting FDA approval but not sure if it is funded for a whole 200. Maybe SK can team up with him to get that number which is an important mark per FDA??
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Re: MANDRYK: It's time to abandon liberation therapy

Postby 1eye » Thu Sep 12, 2013 9:16 am

I think both he mountain of evidence about MS and CCSVI being related, and the mountain of evidence about CCSVI not existing or being unrelated or being caused by MS is very homogenous when you consider that it mostly comes from neurologists and mostly is either directly funded by MS drug manufacturers or is performed by people with obviously conflicting financial interests tied to the drug companies. I think that should be an immediate disqualifier for inclusion in meta-studies, or from consideration as valid scientific evidence. I know research funding is hard to come by, but we have seen how publication biases can kill (witness vioxx).
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Re: MANDRYK: It's time to abandon liberation therapy

Postby msscooter » Thu Sep 12, 2013 9:22 am

Here's the latest update from the Hubbard foundation and their registry. http://www.hubbardfoundation.blogspot.com/
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Re: MANDRYK: It's time to abandon liberation therapy

Postby Cece » Thu Sep 12, 2013 11:03 am

msscooter wrote:Here's the latest update from the Hubbard foundation and their registry. http://www.hubbardfoundation.blogspot.com/


It's not funded, patients or their insurance must pay for the procedure. There are ultrasounds before and at 1 week and 1, 6 and 12 months. The FDA is also allowing only one brand of stent under clearly constrained circumstances, and requiring that patients have an EDSS score before and at 12 months. Otherwise it's pretty straightforward quality-of-life and adverse event form completions. Approximately 100 people have expressed interest in participating and a group of very experienced interventional radiologists around the country are waiting to begin ( we're not posting their names yet until they have a chance to review the final FDA requirements).

The FDA reviewers also said they were down to minor issues and that they recommend but do not require a sham group.
I hope that Dr. Hubbard sets a requirement of how experienced an IR has to be before including them in the group. He describes them as very experienced.
Thanks MSscooter :)
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Re: MANDRYK: It's time to abandon liberation therapy

Postby 1eye » Thu Sep 12, 2013 12:37 pm

It would be good if the chosen stent were non-magnetic. I think mine are cobalt.
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Re: MANDRYK: It's time to abandon liberation therapy

Postby MrSuccess » Thu Sep 12, 2013 2:16 pm

it's a good thing MrSuccess is always sitting down when reading all things CCSVI. After reading Dr.Hubbards latest information regarding his communications with the FDA , I would have fallen to the ground convulsing with laughter. :lol:

As pointed out by Dr.Hubbard ..... Who would PAY out of their own pocket to have a sham medical procedure ?

As much as I do admire the FDA's great caution ..... sometimes they need to apply good old horse sense. I accept their extreme caution in okaying stents. I want that also.

CCSVI has the right guy to take it forward. MrSuccess has always endorsed Dr.Hubbard as the best choice . He is a Neurolgist. And has an open mind to new strategies and discoveries.

No offense intended to any and all other CCSVI medical professionals. This is a TEAM effort , and everyone so far has played an amazing part of reaching the place CCSVI has taken , in the medical world.

I commend you all.

Press On ..... Dr.Hubbard.



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Re: MANDRYK: It's time to abandon liberation therapy

Postby msscooter » Thu Sep 12, 2013 3:39 pm

Nickel in the nitenol stents is allergenic for many. triggers hyperplasia. can be blocked with radioactive threads ie brachytherapy, but you have a 2 week window to catch it...Only non-reactive stent is platinum apparently and you need to rid your body of other metals first if you can. cost of pure platinum is negligible compared to nitenol which is reactive. Got this from a stent-metal-fabricator I know. (They make the metal mesh for the stent companies to use.)
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Re: MANDRYK: It's time to abandon liberation therapy

Postby 1eye » Thu Sep 12, 2013 3:56 pm

As pointed out by Dr.Hubbard ..... Who would PAY out of their own pocket to have a sham medical procedure ?


Just one possibility --

As you know, you will have a 50% chance of being in the sham group. After the trial is unblinded, if you have been in the sham group, and have had a sham procedure, you will have your choice of:

1. The real procedure, and a 10% refund of the fee you have paid us.

or

2. A complete refund, with interest, of the fee you have paid us.

There are many problems with RCT surgeries, but this is not one of them.
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