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

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Zeureka
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Post by Zeureka »

This was posted by Fiddler in another thread some days ago, but the video was at start still incomplete - now it fully works.

Very interesting interview of Dr Zamboni (start partly similar to the Italian Omninews one), followed by interview with Dr Freedman and thoughts by MS patient Mike Augustine.

http://www.cbc.ca/thecurrent/
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GuRu
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Post by GuRu »

1.THE HAMILTON SPECTATOR

http://www.thespec.com/News/Local/article/753784

2. Doctor believes MS linked to blocked neck veins but preaches caution

http://dailygleaner.canadaeast.com/live ... le/1019349
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RRMS Dx 07/09
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Chrystal
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Funding trials of CCSVI: Can the MS Society do better?

Post by Chrystal »

http://healthblog.ctv.ca/post/Funding-t ... etter.aspx

Funding trials of CCSVI: Can the MS Society do better?
April 16, 2010 13:41 by Dr. Lorne Brandes

The good news emanating from this week’s American Academy of Neurology (AAN) meeting in Toronto was that, although skepticism abounded, Dr. Paulo Zamboni and CCSVI were not ignored by “the establishment”. Far from it, judging by the conference’s special session devoted to debating and discussing his controversial new theory that MS is primarily a disease caused by blocked neck or chest veins.

In addition to Dr. Zamboni, a panel of MS experts, a large crowd of neurologists, and more than 4,000 patients from around the world attended the event on line... surely a first for any medical meeting, and indicative of the pivotal role that the Internet has played in galvanizing an MS community enthralled with the Zamboni hypothesis and unhappy with currently-available immunosuppressive therapies.

Now the bad news: despite a willingness of investigators to move forward, there appears to be a major stumbling block in obtaining the monies required to fund the human clinical trials needed to learn whether blocked neck and chest veins cause MS, and whether unblocking them will truly benefit patients with the disease.

For example, in the absence of public funding, Dr. Robert Zivadinov, head of the largest CCSVI study at the University of Buffalo, requires patients to pay several thousand dollars to be tested.

In Canada, ambitious clinical trials planned at UBC, McMaster and the University of Saskatchewan have been delayed for lack of funds. They remain on hold pending the results, expected in June, of a special MS Society-sponsored grant competition. But, as reiterated in a report on CTV’s W5, successful applicants will receive a maximum grant of only $200,000 over two years.

"I am quite convinced as a result of the excitement, the mobilization, the media attention, the process of discovery is going to be much accelerated," Yves Savoie, the president of the Canadian MS Society, told W5.

Much accelerated? By awarding each needy centre (how many, we do not yet know) a total of $200,000 to carry out these sophisticated, expensive and highly important studies? Is he kidding?

As one involved in laboratory and clinical cancer research for over 35 years, I must tell you that, given the costs required for any type of human investigation, especially one as complex as a study of the potential relationship between CCSVI and MS, this is a paltry sum, by any standard. A strategy that spreads small amounts of money among many investigators will accomplish very little at the end of the day.

Can’t the MSS do a lot better than this? Indeed, how much of the money they raise each year actually goes to funding research?
To answer this question, I obtained a copy of the Society’s most recent financial statement, audited by Price, Waterhouse, Coopers, LLP.

Here is the bottom line: for the year ended August 31, 2009, the Canadian MSS took in revenue of $33,677,000. Of that amount, $28,503,000 came from donations (including $1,197,000 from the United Way) and fundraising events.

The amount spent on research? Twenty-two cents out of every dollar collected, for a total of $7,324,000.

As for how the rest was allocated:

• $10,495,000 was spent on services to patients
• $889,000 to help fund MS clinics
• $2,806,000 for chapter and volunteer support and development
• $4,086,000 for public awareness and education
• $1,570,000 to cover “government and community relations”.

So here is my question to the Canadian MSS: could you not spend less money educating people about a disease of which they are already well aware, and stop spending over $1.5 million on government and community relations (whatever form that may take)?

By making those specific budget cuts, you might easily free up several million dollars to help Canadian centres move ahead with their CCSVI trials without jeopardizing patient care, or taking away from other funded research projects.

Given the importance of this issue, I hope you will give serious thought to this suggestion.

~~~~~~~~~~~~~~~~~~~~~

Another FYI:

Macleans (April 26, 2010 Issue) has a great article on CCSVI & The Liberation Procedure also!

Take care and God Bless,
Chrystal
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GuRu
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Post by GuRu »

MedPage Today correspondent Michael Smith to explain the theory, discuss what research still needs to be done:

http://www.medpagetoday.com/MeetingCoverage/AAN/19594
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GuRu
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Post by GuRu »

MS breakthrough still needs clinical trials : The Victoria Times Colonist


http://www.timescolonist.com/health/bre ... story.html
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sbr487
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Post by sbr487 »

Something interesting -- India specific
http://www.prlog.org/10608800-multiple- ... india.html
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Chrystal
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Post by Chrystal »

Very interesting! India specific - but not really India specific at the same time...

"The Multiple Sclerosis (MS) Market Has Estimated Revenues In Excess Of Eight Billion Dollars. The News Of This Simple But Revolutionary Approach Has The MS Drug Industry On Edge. The Financial Implications Imply Not Everyone Will Benefit, If Dr. Zamboni's Breakthrough Proves To Be Key To Eradicating MS........"

...I imagine the worldwide MS Drug industry is on edge, along with others.
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GuRu
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Post by GuRu »

The ‘miracle cure’
A controversial new treatment for MS comes to Canada:

http://www2.macleans.ca/2010/04/19/the- ... %E2%80%99/
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GuRu
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Post by GuRu »

1: Still a long walk ahead for MS sufferers

http://www.owensoundsuntimes.com/Articl ... ?e=2540156

2: Guelph MS walk fuelled by possible scientific breakthrough

http://news.guelphmercury.com/News/Local/article/621547

3: Support gives MS sufferers hope

http://www.brantfordexpositor.ca/Articl ... ?e=2539842
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sbr487
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dont miss!

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GuRu
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Post by GuRu »

Manitoba doctors keep options open on MS treatment:

http://www.winnipegfreepress.com/local/ ... 83154.html
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GuRu
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Post by GuRu »

1: Doctor calls MS treatment 'a work in progress

http://timestranscript.canadaeast.com/l ... le/1024277

2: MS Patient to Speak on Liberation Treatment

http://www.chrisd.ca/blog/22945/duncan- ... re-poland/
We must learn our limits. We are all something, but none of us are everything.
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dlb
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Post by dlb »

Here is a really good blog post! It's nice to know that another medical professional has made a connection & a positive pitch for proactive treatment.....

http://healthblog.ctv.ca/post/Why-gover ... ation.aspx
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Post by mshusband »

By FAR one of the most well reasoned and written articles I've read ... and I believe it puts the issue everyone on TIMS agrees with ... regardless of MS ... shouldn't this be treated? Yes, trials are necessary ... but treatment of a CONGENITAL CONDITION should be treated regardless of the MS link or not.

Great find ... made a great start to my weekend (well not quite yet, I still have 3 hours of work to go).
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GuRu
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Post by GuRu »

1. Internet shifts patient-doctor power structure, CTV:

http://www.ctv.ca/servlet/ArticleNews/s ... hub=Health


2. MS Walk raises thousands for research

http://ottawa.ctv.ca/servlet/an/local/C ... OttawaHome
We must learn our limits. We are all something, but none of us are everything.
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