MS therapy divides

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

MS therapy divides

Postby scorpion » Thu Aug 12, 2010 9:35 am

Wow it is so interesting how CCSVI has been so divisive! Sometimes I think we forget(including me) that we have so much more in common than whether we buy into CCSVI or we do not. FYI no my last name is not Chant!

http://www.canada.com/health/therapy+di ... story.html
Last edited by scorpion on Thu Aug 12, 2010 11:46 am, edited 2 times in total.
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Postby TMrox » Thu Aug 12, 2010 10:11 am

It is a shame that people get bullied because of their beliefs (pro or against) CCSVI.

We have lots in common and should get united to discuss/find out which new therapies are worth.

Censorship of views or developments re CCSVI will take us nowhere.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby PCakes » Thu Aug 12, 2010 10:23 am

..please cite an example of 'bullying' someone who had a negative treatment experience? Is offering up support by means of suggesting why the treatment failed bullying? Granted, sometimes we should just 'listen' but it's the nature of this beast to try to help.
Sorry, I've never witnessed such a response on any of these sites? Other forms of attack, yes, but this? I hope you can not prove me wrong.
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Postby concerned » Thu Aug 12, 2010 10:27 am

Isn't there someone named Chris or something who had the procedure with negative results, and haven't people attacked him for posting it all over the internet? I don't really know what constitutes cyber bullying, but certainly some doctors have experienced at least something resembling it.
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Postby PCakes » Thu Aug 12, 2010 10:36 am

Hi J.. no argument from me on the existence of cyber bullies.. what i ask for is proof of attacks aimed at anyone sharing negative treatment results?..
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Postby scorpion » Thu Aug 12, 2010 10:56 am

Oh no guys!!! This article was supposed to put a tear in your eye, make us all come to our senses, and give each other big cyber hugs! lol. Seriously I think bullying may be a tad bit to strong a word but I have at times felt that I am not accepted by many in the MS community because of my skepticism regarding CCSVI. Heck it was recently stated by someone on here that because I was not completly accepting of the CCSVI theory, I therefore am lying about having MS. Oh how I wish.....
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Postby PCakes » Thu Aug 12, 2010 11:06 am

got ya.. thanks Scorpion..

Dictionary: dev·il's advocate
(dĕv'əlz)
n.
Etymology: translation of New Latin advocatus diaboli
Date: 1760
1. One who argues against a cause or position, not as a committed opponent but simply for the sake of argument or to determine the validity of the cause or position.
Last edited by PCakes on Thu Aug 12, 2010 11:42 am, edited 1 time in total.
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devide and conker

Postby 1eye » Thu Aug 12, 2010 11:12 am

Wow. I've never seen such an egregious spelling error. E is nowhere near I so it's not a typo...

Apologies to wherever I might've stolen the below from:

Top 10 reasons why people fall silent after their liberation coundowns:

10. Their fingers are tired. Finger noise can be very fatiguing..
9. They are struck dumb with the stupidity of their countrymen and countrywomen.
8. Superbug from India infected vocal cords.
7. Gag order from Human Rights Tribunal.
6. They didn't fall silent, they just couldn't think of anything to add.
5. So much time at the library researching CCSVI, they began to believe a little peace and quiet would calm everybody down.
4. [removed].
3. The balloons lodged in their throats.
2. Requested by class action lawyers to keep it down to a dull roar..
1. Found something else to do besides type in responses to more stupid 'paper' tricks on the Internet.
and the number one reason why people FAIL to fall silent after their Liberation treatment:

They love to say 'I told you so'.


I think we should email or call Deb Mathews. the Health Minister of Ontario and Dalton McGuinty, the Premier of Ontario.

You can reach Dalton at http://www.ontario.ca/premier (there is a contact Dalton at that site) and fax him at
(416) 325-3745
TTY/Teletypewriter:
1-800-387-5559

You can contact Deb Mathews at ccu.moh@ontario.ca or you can call the Minister's office at 416-327-4300.

It is Ontario that is stopping this.

If you don't want anyybody and their dog to bring back Superbug from India, you'd better start treating CCSVI in Canada.

Your 'divide and conquer' tactic will only make this impatient patient population more resolute. You want to see how the wind blows, you don't need a weatherman. Pay for a poll.
"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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Postby PCakes » Thu Aug 12, 2010 11:22 am

Wow. I've never seen such an egregious spelling error. E is nowhere near I so it's not a typo...


??.. your posts challenge the mind.. in a good way...are you a teacher?
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Re: devide and conker

Postby scorpion » Thu Aug 12, 2010 11:40 am

1eye wrote:Wow. I've never seen such an egregious spelling error. E is nowhere near I so it's not a typo...

Apologies to wherever I might've stolen the below from:

Top 10 reasons why people fall silent after their liberation coundowns:

10. Their fingers are tired. Finger noise can be very fatiguing..
9. They are struck dumb with the stupidity of their countrymen and countrywomen.
8. Superbug from India infected vocal cords.
7. Gag order from Human Rights Tribunal.
6. They didn't fall silent, they just couldn't think of anything to add.
5. So much time at the library researching CCSVI, they began to believe a little peace and quiet would calm everybody down.
4. [removed]
3. The balloons lodged in their throats.
2. Requested by class action lawyers to keep it down to a dull roar..
1. Found something else to do besides type in responses to more stupid 'paper' tricks on the Internet.
and the number one reason why people FAIL to fall silent after their Liberation treatment:

They love to say 'I told you so'.


I think we should email or call Deb Mathews. the Health Minister of Ontario and Dalton McGuinty, the Premier of Ontario.

You can reach Dalton at http://www.ontario.ca/premier (there is a contact Dalton at that site) and fax him at
(416) 325-3745
TTY/Teletypewriter:
1-800-387-5559

You can contact Deb Mathews at ccu.moh@ontario.ca or you can call the Minister's office at 416-327-4300.

It is Ontario that is stopping this.

If you don't want anyybody and their dog to bring back Superbug from India, you'd better start treating CCSVI in Canada.

Your 'divide and conquer' tactic will only make this impatient patient population more resolute. You want to see how the wind blows, you don't need a weatherman. Pay for a poll.


Either you missed the point of my post or I am not getting where you are coming from with the "divide and conquer" thing?
Last edited by scorpion on Thu Aug 12, 2010 11:41 am, edited 1 time in total.
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Postby Rokkit » Thu Aug 12, 2010 11:41 am

scorpion wrote:Oh no guys!!! This article was supposed to put a tear in your eye, make us all come to our senses, and give each other big cyber hugs! lol. Seriously I think bullying may be a tad bit to strong a word but I have at times felt that I am not accepted by many in the MS community because of my skepticism regarding CCSVI. Heck it was recently stated by someone on here that because I was not completly accepting of the CCSVI theory, I therefore am lying about having MS. Oh how I wish.....

Are you sure that's not you in the article? That aspirin remark sure sounds like you. :D

I'd like to think I don't have a problem with well-intentioned skepticism. But I don't feel like we're all in this together trying to figure this out for most of the skeptics on this board. It feels more like the skeptics are waiting for CCSVI to crumble so they can say I told you so.

I think the most productive position would be for one to be skeptical, but hopeful. It seems hardly anyone is in that category though. Marc (wheelchair kamikaze) is the only one I can think of who has been like that. The rest of us either bought in early (me) or are skeptics to the point of kind of being jerks. "Oh here's a piece of damaging news, lets go rub it in the face of the rabid CCSVIers." "Oh here's a post where something bad happened to someone, let me post a concerned reply so I can bump the thread." I don't see any skeptics gratuitously bumping good news posts. That just smacks of an agenda to me.
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Postby ozarkcanoer » Thu Aug 12, 2010 11:52 am

I am getting the procedure in the USA next Tuesday. I will not be silent whichever way it goes for me. And whether I think it helps or not I will tell the truth.

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Re: devide and conker

Postby scorpion » Thu Aug 12, 2010 11:59 am

1eye wrote:Wow. I've never seen such an egregious spelling error. E is nowhere near I so it's not a typo...

Apologies to wherever I might've stolen the below from:

Top 10 reasons why people fall silent after their liberation coundowns:

10. Their fingers are tired. Finger noise can be very fatiguing..
9. They are struck dumb with the stupidity of their countrymen and countrywomen.
8. Superbug from India infected vocal cords.
7. Gag order from Human Rights Tribunal.
6. They didn't fall silent, they just couldn't think of anything to add.
5. So much time at the library researching CCSVI, they began to believe a little peace and quiet would calm everybody down.
4. [removed].
3. The balloons lodged in their throats.
2. Requested by class action lawyers to keep it down to a dull roar..
1. Found something else to do besides type in responses to more stupid 'paper' tricks on the Internet.
and the number one reason why people FAIL to fall silent after their Liberation treatment:

They love to say 'I told you so'.


I think we should email or call Deb Mathews. the Health Minister of Ontario and Dalton McGuinty, the Premier of Ontario.

You can reach Dalton at http://www.ontario.ca/premier (there is a contact Dalton at that site) and fax him at
(416) 325-3745
TTY/Teletypewriter:
1-800-387-5559

You can contact Deb Mathews at ccu.moh@ontario.ca or you can call the Minister's office at 416-327-4300.

It is Ontario that is stopping this.

If you don't want anyybody and their dog to bring back Superbug from India, you'd better start treating CCSVI in Canada.

Your 'divide and conquer' tactic will only make this impatient patient population more resolute. You want to see how the wind blows, you don't need a weatherman. Pay for a poll.


. Before I was diagnosed with MS I did not make these stupid spelling errors or put in words that should not be there but since my diagnosis they pop up everywhere and it is really frustrating. Honestly maybe it is just me but some of the top ten reasons you posted are pretty distasteful. Nothing wrong with humor but "4. [removed]." Come on man.
Last edited by scorpion on Thu Aug 12, 2010 12:25 pm, edited 1 time in total.
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Postby TMrox » Thu Aug 12, 2010 12:05 pm

PCakes wrote:..please cite an example of 'bullying' someone who had a negative treatment experience?


I've been bullied, or I have certainly felt that way, for sharing my experience with CCSVI. Thankfully this has not has not been my experience in this forum.

The link that Scorpio shared, talks about the experience of Chant, a MS patient who is skeptic about CCSVI, and the criticism he has received in online chatrooms. Hey, he has not precisely been told nice things for sharing his views...

I have no doubts that CCSVI has divided both patients and doctors. I wish this division could stop. But anyway, the topic has proven to be controversial. So I'm just hopeful that docs of various disciplines start collaborating with each other.

Just for curiousity, here is the definiton of bullying from wikipedia. Yes that describes exactly how I felt:

Bullying is a form of abuse. It comprises repeated acts over time that involves a real or perceived imbalance of power with the more powerful individual or group abusing those who are less powerful. The power imbalance may be social power and/or physical power. The victim of bullying is sometimes referred to as a target.

Bullying consists of three basic types of abuse - emotional, verbal and physical. It typically involves subtle methods of coercion such as psychological manipulation. Bullying can be defined in many different ways.



Rox
Last edited by TMrox on Thu Aug 12, 2010 12:19 pm, edited 2 times in total.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Lyon » Thu Aug 12, 2010 12:16 pm

.
Last edited by Lyon on Sun Nov 20, 2011 6:57 pm, edited 1 time in total.
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