Nature of Things

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

Nature of Things

Postby 1eye » Sun Feb 05, 2012 9:13 pm

The Nature of Things show was broadcast tonight at 6pm here. It will be shown again on the 9th, I think. I missed it, but I intend to watch the rebroadcast.
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Re: Nature of Things

Postby DougL » Tue Feb 07, 2012 5:53 am

there is a preview on you tube.

i hope to watch it as well.
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Re: Nature of Things

Postby erinc14 » Tue Feb 07, 2012 8:36 am

what's it about ?
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Re: Nature of Things

Postby ttucker3 » Tue Feb 07, 2012 9:27 am

The 30 sec video clip can be found at http://www.youtube.com/watch?v=qtg4CS6Wq-0.

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Re: Nature of Things

Postby DougL » Tue Feb 07, 2012 10:21 am

erinc14 wrote:what's it about ?


from cbc dot ca




Multiple sclerosis is a debilitating disease, and there is no cure. Then, a radical new theory appears to offer hope to patients. The medical community is lukewarm to the concept, yet the Internet is buzzing with positive stories and outcomes. What happens when the medical system and hope collide?

The effects of MS are cruel - fatigue, loss of muscle control and increasing debility. In 2009, there was suddenly a ray of hope, a treatment that showed signs of helping MS patients.


Dr. Paolo ZamboniIn northern Italy, research scientist Dr. Paolo Zamboni reported a correlation between blocked neck veins and MS. He pioneered a new treatment, called Liberation Therapy, unblocking the jugular veins to help with a condition he calls chronic cerebrospinal venous insufficiency or CCSVI. The idea and treatment were a radical departure from accepted practice.

The small research paper was published online before it was published in print. Immediately, this research was circulating internationally via social media circles, creating a sudden explosion of attention. With an increasing number of patients electing to get the treatment in private clinics, video testimonies soon began to appear on the Internet showing miraculous improvements.


A patient seeks treatment in Costa RicaA few Canadian clinics began to look into the treatment, but the Canadian medical establishment was reluctant to proceed with an unproven treatment that had not followed the proper research protocol. While some patients were torn between the lure of a cure and the caution, others took matters into their own hands.

Many began travelling out of the country for the procedure paying for their own treatment – often without telling their physicians.

The medical community has developed protocols, processes and systems concerning research and patient care. These have survived politics, wars and the test of time. But, this time, the medical research system was challenged by two factors: hope, and the Internet.

MS Wars is a one hour documentary that delves into the science, controversy and human drama around Liberation Therapy. It is a tale that explores how the Internet has spurred a social network movement that is changing the doctor/patient relationship and the repercussions for physician and institutions.
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Re: Nature of Things

Postby erinc14 » Tue Feb 07, 2012 11:03 am

i will definitely try to watch !
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Re: Nature of Things

Postby 1eye » Tue Feb 07, 2012 6:54 pm

This was sent out, before the twitter-twitch, to members of the Ontario MS Society:

CBC’s The Nature of Things will broadcast a one-hour documentary on
multiple sclerosis and CCSVI entitled /MS Wars: Hope, Science and the
Internet /on Thursday, February 9 at 8 pm on your local CBC stations.

The program will focus on the reaction of people with MS to Dr.
Zamboni’s research on CCSVI and MS and how it could affect their
lives. It will also highlight how social media has become integral to
the campaign for access to treatment in the country, the political
pressure surrounding the topic and insights from Canadians with MS who
sought treatment for CCSVI abroad.

**

**

*References:*

Nature of Things preview: MS Wars: Hope, Science and the Internet
http://www.cbc.ca/natureofthings/episod ... ernet.html

CBC Docs Facebook page
http://www.facebook.com/video/video.php ... 1638040631

* People living with MS are at the centreof our work and this will
continue to be what drives us as we move through this exciting
phase of MS research. The MS Society of Canada’s mandate is to end
MS and to assist those who are touched by it.
* The MS Society of Canada understands the urgency of coming to
conclusive answers on the topic of CCSVI. We will continue to work
with federal and provincial governments and their agencies to
advocate for safe, evidence-based research to further our
understanding of CCSVI and MS.
* All Canadians living with MS require answers about the potential
risks and benefits of CCSVI treatment. The MS Society of Canada
responded by jointly funding seven clinical diagnostic studies
totaling $2.4 million
http://mssociety.ca/en/releases/nr_20100611.htm with the U.S.
National MS Society and has committed $1 million
http://mssociety.ca/en/releases/nr_20100916.htm towards the
financial cost of a clinical trial.
* The MS Society honoursand respects the decisions Canadians living
with MS make for the benefit of their own health. We acknowledge
and respect that some Canadians living with MS have travelled
abroad to seek CCSVI related procedures and others have decided to
wait for more research.

**

*Social media:*

Facebook and Twitter messages will be shared on Tuesday, February 7 at
3 pm EST. Feel free to share the Facebook message on your division or
chapter Facebook page by clicking on the Share button from the
National page. You can also retweet the Twitter message from the
@MSSocietyCanada account.

Contact Rob Petrollini at
rob.petrollini@mssociety.ca
or ext. 3155 for more information.

**

*Resources:*

http://www.ccsvi.ca/

CCSVI toolkit on Mercury

https://mercure.mssociety.ca/en/tools/c ... /Home.aspx

Social media copy (Facebook and Twitter)

https://mercure.mssociety.ca/en/tools/c ... iaText.doc
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Nature of Things

Postby Cece » Thu Feb 09, 2012 5:20 pm

It's airing tonight, did anyone catch it?
http://www.canada.com/entertainment/Doc ... story.html
``When you start to assemble a large number of anecdotes, that becomes a large body of evidence,'' said Kaldor, writer/director. ``These people started to assemble that evidence, until it got to a point where they couldn't just say it's an individual story.''
definition of anecdotal evidence: http://en.wikipedia.org/wiki/Anecdotal_evidence
``At one point, one of our crew people was just in tears with the emotion involved with following these people,'' Kaldor said. ``For them, it's not immediate life and death, but it is life and death.''
Agree completely.
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Re: Nature of Things

Postby fiddler » Thu Feb 09, 2012 11:36 pm

My wife saw it and said it was quite good. I'm out of country (business) so will have to catch a repeat, if I can. It's not up on iTunes yet.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Nature of Things

Postby JSTCD » Fri Feb 10, 2012 5:14 am

It was fun to watch,
Bumbling medical profesionals poo-pooing anecdotal evidence while real patients get better in front of your eyes.

Makes you mad though, not sure when anecdotal evidence, "the lowest form of evidence" (plus all the meta studies they have now) gets to be enough to change these peoples mind.

What upset's me most is these guys are the literal "death panel" that Sarah Palin always goes on about, and I'd for hate anyting she said to actually be right. somehow this should be the patients choice, not some panels, not the goverments.
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Re: Nature of Things

Postby DougL » Fri Feb 10, 2012 5:47 am

i watched it with my partner. cried most of the time LOL

unfortunately as far as providing information, i found it to be a bit out of date. it did a great job of introducing Dr. Zamboni and the history of CCSVI and the info it did provide was quite good. The Nature of Things is a big show in Canada. this would have been watched by many people. spreading the word is always good. i personally think the general response will be "why deny pwMS this treatment? it is safe and the video evidence is hard to dispute. what is the harm even if it doesn't work?". the show almost skipped the whole topic of the Canadians that died after treatment (which i thought was good). we all know there are risks with any surgery and the show did not dwell on the topic.

it did a great job of explaining how the topic of CCSVI cascaded so quickly. some of the stats on pwMS and the internet were staggering (for example the number of blogs relating to MS). the videos and interviews were very compelling. they followed a group (of 12 i think) that went to Costa Rica. my partner and i joked about why we went to Brooklyn and not down south.

i hate to say this but in my opinion, one of the reps of the MS Society of Canada did a good job of explaining their position. she did make it sound like they had the best interest of pwMS at heart. i liked the fact that they eventually gave in to the pressure of its members but i did not like that it took a financial hit to make them go with the flow (so to speak). it was very clear that donations took a big hit and this forced them to rethink their position.

there was also a guy from BC (i forget his position). the biggest thing i got from him and the MS Society woman was that many groups have been caught in the middle. but it does sound like they really do care about pwMS.

i won't speak about the main neurologist they interviewed or the head of the MS Society. i did not like the fact that the show really pegged CCSVI as a cure for MS. but they did at least show the opinion that pwMS do not see it as a cure but as an improvement in quality of life.

the biggest shock was seeing Dr. Zamboni. I did not know he was also disabled (sorry i did not catch what his condition is). it was great to see his passion (the same passion i saw with a certain person in Brooklyn). it was very hard to watch him talk about how he felt when the press proclaimed him as a hoax. the doc that assisted him and performed the actual operations was also very interesting.

overall, i would say the end result of airing this show will be very positive for pwMS. i posted the info on fb and will be interested to hear what my family thought of the show.
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Re: Nature of Things

Postby DougL » Fri Feb 10, 2012 6:23 am

dumbest quote from the show (thanks Chris)

an MS specialist "we can't offer the treatment to everyone. if everyone gets better who will be left to study?"




the response by a 15 year old "with logic like that we should stop graduating kids from high school or one day there may not be any left".
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Re: Nature of Things

Postby Ali888 » Fri Feb 10, 2012 6:34 am

I was worried about watching that show. Had it all been about "poor MSers and their desperation to seek help no matter what the financial and perhaps medical cost might be" I would have been angry. That would have shot any chance of sleep last night as it was on just before bed. In the end, I had to watch. Glad I did! I only wish it had delved a little further. Medical procedures are not put through the same double-blind trials as drugs.

Anyway, I actually slept last night.

Anyway MS patients - one! Dr. Jock Murray - zero!
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Re: Nature of Things

Postby jackiejay » Fri Feb 10, 2012 7:06 am

I feel that on the whole the show was pretty good....did seem a little dated, think most was filmed this past summer so it's 6 mths. behind on a lot of things.....why is Jock Murray (aka debbie downer) always on these shows?....focused on his babbling too much....glad to see Dr. McDonald on it....Dr. Hubbard would have been a good addition or Dr. Sclafani or Siskin......the Costa Rica angle makes it seem kind of a third worldish procedure....not to say that isn't a good place to have it done but perhaps more insight into all the American clinics doing the procedure would have helped.
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Re: Nature of Things

Postby erinc14 » Fri Feb 10, 2012 8:39 am

"perhaps more insight into all the American clinics doing the procedure would have helped.""

yes
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