Media Coverage on CCSVI!!!!!!!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by KikiT » Thu Sep 30, 2010 4:13 pm

<[url=]shortened url[/url]>

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Post by LivabirdsHubbie » Sun Oct 10, 2010 9:31 pm

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Post by CureIous » Sun Oct 10, 2010 10:40 pm

Until the national media here gets on it, like they have been sitting on it since at least last December, there will be over 300 million+ people kept out of the loop.

Local media is meaningless unless picked up by affiliates, and since its a local story, that's highly unlikely to occur.

Hip hip hurray for the UK and Britain, but until the U.S. gets broad coverage, this will remain stagnant.

% wise, there's not as many people actively using the internet as you might think.

Always good to keep that big picture perspective. Luckily, since the media is fairly useless for actually imparting FACTS, this has little effect on the individual, who has resources aplenty to investigate on their own.

I mean seriously people, how many times have we seen the media get ANYTHING right on this in the past year and a half? How many times though have we seen them totally butcher quotes and facts until they barely resemble the original? Almost every time.

So be careful what you ask for, most of the media, internet variety included, is not out for your best interests and could care less about factual details, as long as the line sounds good. There will be stories like, "Possible cure for MS? Experts say "Not so fast".
"Patients clamoring for unproven treatment, flying overseas proves costly for some".

I have little respect for the media, true journalism died long ago, they've done little to help the cause and much to harm it so far. Can you say, "Misquoted?".
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:, Virtually symptom free since, no relap

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Post by MaggieMae » Mon Oct 11, 2010 6:17 am


You are so right about the media. I would have never believed it until I followed CCSVI this past year and a half. And there are many people who only get their information from the news media. It is all about the one liners - what makes it interesting - very little real journalism.

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Post by PCakes » Mon Oct 25, 2010 6:42 am ... 721816.php
MS treatment put to test in Albany
Published: 12:12 a.m., Monday, October 25, 2010
ALBANY -- Nearly 300 patients with multiple sclerosis sought out an experimental procedure at Albany Medical Center this year. Denise Manley was among them.

Manley, 48, of Pittsfield, Mass., said her MS was so bad that, in her desperation, she was considering assisted suicide. Instead, she underwent a new treatment that involved widening the veins in her neck and chest.
here's another.. ... -1.1063560
25 Oct 2010

Scotland’s community of 10,000 multiple sclerosis sufferers will be focused intently on a hotel in Clydebank this weekend, where the potential of a controversial new treatment will be debated by clinical experts.

Specialists from Poland, Canada, Bulgaria, Jordan and the UK will come together to discuss the theories of Dr Paulo Zamboni, an Italian vascular surgeon, who claims that the symptoms of MS can be treated by clearing the blocked veins which cause toxic build-ups in the brain.
Clydebank Conference info.. ... rence.html

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Post by sbr487 » Mon Oct 25, 2010 7:16 am

Thank you, pcakes. Especially for the last link ... our regulars pioneers will meet and discuss ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

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CCSVI in Seattle and San Diego

Post by cheerleader » Wed Oct 27, 2010 7:44 am

There will be featured stories on CCSVI research and patients seeking treatment aired on ABC News affiliates in Seattle, WA and San Diego, CA this week--

Thursday, October 28th 11pm and Friday, October 29th at 4pm
A Kathi Goertzen Problem Solver Report
The CCSVI Discovery and patient group interview
Friday, October 29th 5pm
Interviews with patients
ABC's KOMO 4 News, Seattle WA
available for viewing online after broadcast at:

Here is a preview---
link to video

Friday, October 29th at 11pm
The CCSVI discovery and Interview with Dr. David Hubbard
ABC Channel 10 News, San Diego, CA
available for viewing online after broadcast at:

For all US-based news on CCSVI, make sure to join CCSVI Alliance on Facebook-- ... 2427429118
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09

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Post by PCakes » Fri Oct 29, 2010 8:51 pm

This is a great article...
<shortened url>

From the comments section, look who popped in to say hello..
colros 11:27 PM on October 29, 2010

Alberta Health is quite correct. Zamboni's "CCSVI" and its "treatment" with "liberation" is junk science. See my blog for details. ... i-surreal/

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Post by PCakes » Sat Nov 06, 2010 11:06 pm ... /17y5qp95m

Top Ten..
venous angioplasty - no mention :(
fingolimod - yes, pushed through by the FDA because so many people are suffering :?

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Post by tzootsi » Sun Dec 12, 2010 5:39 pm

Great new newscast - thank you CTV!!!

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Post by muse » Sun Dec 12, 2010 5:50 pm

tzootsi wrote:Great new newscast - thank you CTV!!!
GREAT job dear Anna, Dawn & Jamie for speaking out the truth in our behalf! GREAT job CTV to broadcast the truth! p.s. The name of the “doctor” who wrote the unbelievable E-mail to his patient is Mr. Mark Freedman, Neurologist in Ottaw Hospital, CA. What a psychopath!

Here you can read the full E-mail (and more) with which Mr. hoax-Freedman has abused his patient. ... &topic=600


----- Forwarded Message ----
From: "Freedman, Mark" <>
Sent: Fri, December 3, 2010 1:49:45 AM
Subject: Re: MS

XXXXXXXXXX, I'm very disappointed that you would join this mass hysteria movement based on unfounded facts that has led to no less than a cult, stoked by media who are loving the reaction of people feeding them with endless material. What if research shows, as it appears to be doing, that veins of MS patients are no different than anyone else's? Should we all go trying to alter our 'normal' anatomy? Is there no lesson learned from the now famous tragic death of the Costa Rican man who refused the advice of his doctors a) to not have the procedure and b) not to try to unplug it? But who am I to question the word of the many self-acclaimed experts who feed this frenzy like the rock doctor Embry whose lifelong study of lifeless objects has given him the wisdom to comment on such complex issues?

I'm happy to discuss this with you anytime XXXXXXXXXXXXXX, but why you or any other of the cult members believe that I have influence over the government is beyond me. Our system supports evidence-based medicine. To do anything else would destroy it. Thus far the evidence simply does not support the theory of CCSVI regardless of the seemingly countless anecdotal reports.

But then, what do I know about such things?
Sent from my BlackBerry

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the Canada 3

Post by leetz » Sun Dec 12, 2010 10:15 pm

the above message MUST be from a Neuro or maybe someone that does not have MS...Many many thanks to the Canadian the pharma's didn't like that very much either!!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

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Post by annad » Mon Dec 13, 2010 6:54 am

yes, that letter was sent by one of the MSSC 'top' neuros to a patient who inquired about CCSVI. He is on their advisory counsel and has received millions in research money and is tied up with big pharma. . . . big surprise. He has already made up his mind that this is a hoax yet they gave his hospital funding for their so-called CCSVI studies. Yeah, like he's going to make it succeed!
Glad it aired!

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Top health story of 2010

Post by GuRu » Thu Dec 30, 2010 3:48 am

CBC's Kelly Crowe takes us through a major medical story in 2010, the controversial vein-opening therapy for multiple sclerosis. Is it a cure or a cautionary tale? ... 1715066180
We must learn our limits. We are all something, but none of us are everything.
RRMS Dx 07/09

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Post by BELOU » Fri Dec 31, 2010 11:34 am

I'm proud to offer you.... Dr. Randall Schapiro'S comments. Yes, he is a member of US MS.


A respected MS neurologist, researcher and educator has slammed the controversial CCSVI hypothesis, also known as the “Zamboni Liberation Therapy”. Dr. Randall Schapiro, Board member of the National MS Society in the US spoke to an MS Society sponsored conference of members and healthcare professionals on Monday in Winnipeg: “I’m sorry that any of you have ever had to hear of CCSVI”. He went on to say: “I put this treatment in the same category as ‘bee-sting’ or ‘pregnant cow’s milk’ therapy and it (CCSVI) is something that we will have totally forgotten about three years from now”. Dr. Schapiro went on to say that he was strongly opposed to funding upcoming clinical trials of CCSVI by either the government or the MS Society and that “the money invested in these trials could certainly be put to better use where MS research is concerned.”

Over the years, many therapies have been used for relief of MS symptoms, some offering outright cures. Bee Venom Therapy (BVT) or Apitherapy, is one such homeopathic therapy that was widely supported as an MS cure several years ago. Major studies by the American Academy of Neurology, with findings published in 2005 concluded that there was no improvement of disability and fatigue in patients with relapsing multiple sclerosis and did not improve quality of life. Adding that CCSVI treatment is in the same exotic category and that it would be impossible for vein structure to be involved as a causal factor in MS, Shapiro went on to say that “the Zamboni theory only works when it’s used for cleaning hockey rinks.”

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