The science and politics of CCSVI and Multiple Sclerosis

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

Postby concerned » Sat Jun 19, 2010 6:50 pm

I never said she claimed it was the be all end all, I said when other people say that nobody says anything but when skeptics say something inaccurate about CCSVI people jump on them.

Also, i said "de facto leader of a grassroots political movement" not Jim Jones, and I didn't mean it as an insult.

BUT people here seem to continously spread the "stents prevent restenosis" idea without any backing, and despite the efforts of people like Dr. S and all the others who voice concerns over the stents, the myth persists and could potentially be really dangerous to peoples health. Especially when they return home from overseas and have nobody to give them aftercare.

All the efforts to correct misinformed skeptics is great but it needs to be done to the believers too if you want to have a well informed community and it's not just cheers or anybodies sole responsibility, but she does take that responsibility on her self.
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Postby MrSuccess » Sat Jun 19, 2010 8:54 pm

you forgot to add backstabers :wink:

What a hypercritical comment.

Don't make me do the research. :twisted:







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Postby concerned » Sat Jun 19, 2010 8:56 pm

????
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Postby sbr487 » Sat Jun 19, 2010 9:12 pm

cheerleader wrote:I'm not around here much anymore, because


That would make a handful of people here successful.

I have never seen anyone so anti something, yet hang around the forums meant mainly to promote it. They make random statements in discussions to distract (e.g. ms is not immune related) and see that the discussion does not converge ...
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Postby CureIous » Sat Jun 19, 2010 9:21 pm

I hardly consider someone who's been here an entire month an expert on the various machinations of this board, especially since there's no quotes, just generalizations about "people are saying/doing" things in an irrational manner, or making irrational claims, or being CCSVI+nothing adherents, yet I see very few, I'd proffer almost none who've been treated as being anti-immune model, anti-dmd, or pushing anyone else to do anything overseas.

Cheer's mantra has been "go local" from the beginning and hasn't wavered. I see no mentions from any of the longer-than-one-monther's here for any alterations in the course of DMD treatments when they speak of others, myself included.

The internet is the new wild west, there is no sheriff in town here, but feel free to attempt to constrain freedoms as you see fit, and good luck with that. The critics can post all they like, even start new threads, but posting internet media articles which are a dime a dozen now in the blogosphere means that one can pretty much prove anything at any time, depending on their search skills.

If newbies believe everything they see on the internet then make appt's and jump on planes and let doctors in foreign countries implant medical devices then come home all in the course of a month, well then they would fall for just about anything anyways and there's no putting a lid on that.

Luckily the majority tend to be a bit more circumspect than that, do a bit more digging, ask a few more questions, and most MS'ers are pretty sharp anyways and fully in tune with their bodies and know when something makes sense or not. That still doesn't mean they are plane jumping.

Who was it that coined the phrase, "go local"? Oh yeah, Cheerleader, quite awhile ago in fact, many months ago before many on these boards even heard of ccsvi, zamboni and the like. That's just the plain fact of it, and Lyon knows that too...

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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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby concerned » Sat Jun 19, 2010 9:23 pm

Is the forum meant to promote it or discuss it? Whether I like it or not, CCSVI has been a big part of my life for the past 7-8 months and it is a daily topic of discussion in my everyday, non-internet life. Why can't I talk about it and ask questions about claims or trains of thought or whatever?

Also, lots of people DO poo poo any immunological basis (or seemingly sometimes even component) to MS. They DO say the drugs are all bad all the time and big pharma just want to hurt them even though, as cheer mentioned, even Zamboni says to stay on the drugs. And these statements are influencing the way people think and I know this first hand.

EDIT: I commended cheer for her efforts to keep things rational, I didn't say she's the culprit. And if you really want, I can pull up some quotes about the immunolgical aspect, the stent issue, why neuro's can't be trusted, why everyone should just go to poland, how 'Liberation' halts disease progression, etc.

Also I didn't say people's freedom of expression should be curtailed on teh internetz, I said that as a movement, the CCSVI community and most of all it's leaders should try to keep things on track in a productive manner, and make sure people are welll informed.
Last edited by concerned on Sat Jun 19, 2010 10:36 pm, edited 3 times in total.
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Postby fernando » Sat Jun 19, 2010 9:30 pm

Lyon and Concerned.

I see you both like to appear together then my msg is for both of you.

Say whatever you want. Pretend you are helping people to decide, giving some "balance" to the discussion. Jump whenever someone "liberated" has a setback, be there whenever a newspaper, a blogger or a paper say something bad about CCSVI.

BUT, my friends, words are cheap. If you want someone to follow you, to believe in you, to adore you, DO something beyond hiding beneath a keyboard. Yes, go and really do something for others.

If you decide to continue living the keyboard life, just to be coherent, at least, bring your good fight against not proved treatments and irresponsible leaders to other forums, ABX for instance. Be there whenever someone has a setback, or some news go against that therapy.

Maybe you will gain some credibility and you will be viewed as people who really seek the Truth instead of mere amplifiers of and old broken record that says "not proved, not proved, not proved..." ad nauseum.
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Postby concerned » Sat Jun 19, 2010 9:36 pm

That would be a great record. I have a record that has 1000 locked-groove loops on it, but it's only got some counting (numbers 1-50 each in a individual loop.) as far as talking goes.
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Postby sbr487 » Sat Jun 19, 2010 9:40 pm

concerned wrote:Also, lots of people DO poo poo any immunological basis or seemingly sometimes even component to MS. They DO say the drugs are all bad all the time and big pharma just want to hurt them even though, as cheer mentioned, even Zamboni says to stay on the drugs. And these statements are influencing the way people think and I know this first hand.


I am not sure where you are coming from. I am not sure if CCSVI precludes immune component. How else can one explain venous lesions. It probably takes out the auto- part from errant immune system.

There is a section who would like to keep MS as disease of auto-immune origin and do everything in that direction.

There is a section that tries to close the loop about the errant immune. To me, this is just answering lot of unknown questions around auto-immune approach.

Time will tell ....
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Postby concerned » Sat Jun 19, 2010 9:41 pm

I'm not for one way or the other, and I agree, time will tell.
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Postby Lyon » Sun Jun 20, 2010 3:52 am

.
Last edited by Lyon on Sun Nov 20, 2011 8:20 pm, edited 1 time in total.
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Postby erinc14 » Sun Jun 20, 2010 7:02 am

"Dr. F"

Perfect !
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Postby erinc14 » Sun Jun 20, 2010 7:24 am

Some food for thought..
Below is a list of some Canada’s charities by Money Sense Magazine
Chart shows % of revenue spent on admin, fundraising and management

Charity % spent Revenue
Multiple Sclerosis Society of Canada 48% $30,480,416
Canadian Cancer Society Ontario Division 43% $116,621,000
Canadian Cancer Society B.C. and Yukon Division 42% $33,406,883
Canadian Breast Cancer Foundation 38% $52,973,959
The Canadian National Institute For The Blind 29% $119,378,994
Canadian Diabetes Association 28% $78,003,511
BC Cancer Foundation 23% $49,840,539
Canadian UNICEF Committee 22% $59,267,950
Ducks Unlimited Canada 21% $97,847,037
The Salvation Army Headquarters 19% $155,783,636
World Vision Canada 18% $381,831,725
Doctors Without Borders Canada 18% $28,599,061
The Canadian Red Cross Society 17% $253,196,921
United Israel Appeal Of Canada Inc 16% $70,459,967
The War Amputations of Canada 9% $33,411,154
The Nature Conservancy Of Canada 7% $160,691,211

and there are alot more listed in mnagazine
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Postby vivavie » Sun Jun 20, 2010 9:07 am

Hi Erin, I was also disgusted when I read that in Money Sense Mag. ONLY 25% of the money goes to research.
For 4 years (out of 6) we have been the "champ team" in Montreal to raise most money. This year we stopped given to MS society. All this time and energy waisted...
Now we plan to give to a research that will have direct impact on CCSVI and MS, not on some bogus blablabla. Testing only (DOpple, MRV) is not enough. We need to validate the impact of angio procedure on MS patient. That's IT that's all. I don't see much of that in any proposal so far. Seems to me that only Dr S has a pratical research proposal.
I was liberated on April 25.
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Postby scorpion » Sun Jun 20, 2010 10:56 am

Is the forum meant to promote it or discuss it? That is a great question Concerned. This forum has has always been one big billboard for the promotion of CCSVI. It has always been tough to post anything critical about CCSVI on this forum without being labeled a trouble maker. You will notice this forum is the ONLY forum on thisisms where such heated posts occur. Why is this? When Zamboni's initial "results" were released hysteria occurred. I do not think it has mattered or will matter that no one has been able to replicate Zamboni's initial results.
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