What happened to this forum???

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

What happened to this forum???

Postby nicko » Thu Aug 05, 2010 6:47 pm

These forums USE TO be a great place to see what was going on in the world of ccsvi. Now its completely filled with childish bickering. Each and every thread I look at seems to end up the same way.

I think some serious moderation is in need. Facebook has become a much much better place to avoid all this....

I'm not against or with ccsvi, i'm just sitting back and waiting to see what happens to this interesting theory. But this forum seems to be the home of some serious negativity..... How can people with ms be so unwilling to be open minded when it comes to a new theory? Its almost like they don't have ms at all and are here just to ruin this place.

This will be my final post and I won't be back. I was never much of a contribution but I thought i'd give my opinion before i go!
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Postby cheerleader » Thu Aug 05, 2010 7:00 pm

hey nicko--
you are not alone. The nasty back and forth got to be too much for many people that used to post regularly (and we've stayed in touch through FB or e-mail). And Jimmy stops threads, breaks up fights, but honestly, there's only so much she can do.

Glad that FB has provided you with discussion and community. Don't forget to check out www.ccsvi.org for updated research papers (we just posted a new one Shayk found on cerebral endothelial dysfunction in MS)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby AlmostClever » Thu Aug 05, 2010 7:21 pm

I think the fact that you can't hide behind an anonymous identity on FaceBook would explain the better behavior there.

Signed,

Anonymous
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Lyon » Thu Aug 05, 2010 7:36 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:31 pm, edited 1 time in total.
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Postby PCakes » Thu Aug 05, 2010 7:42 pm

i was pondering the bad ccsvi press of late and the articulate responses.. it makes me very proud of this community although i would prefer that the journalists did some real research before going to print.. then i thought of course, this would not inspire the reaction desired..
When a child acts up to get attention, the best thing to do is ignore them.. Would this work for the journalists? and.... well, you know.

I would really miss TiMS.. there are some good good people here... :)
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Postby cheerleader » Thu Aug 05, 2010 7:58 pm

Lyon wrote:cheer started a facebook page called "CCSVI in Multiple Sclerosis" and I'm almost sure that isn't her legal name.
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I actually considered calling it the "Joan page", but that was already taken...but seriously, Bob, folks there know who I am, because I'm listed as co-administrator of the page. There is a certain accountability that comes from having a name and face and ID in cyber space...although people do create alter egos to post on Facebook, complete with Viggo Mortensen pics. Not many, but some. The page has 15,500 known members, but also has over 5,000 lurkers that don't post or "like" but follow the info anonymously.

The problem here at TIMS on the CCSVI Forum is that threads go way OT and personal stuff starts getting thrown around. Listen, I've been guilty of doing this, too...I've lost it, and gotten nasty. It's hard not to be emotionally involved, but at a certain point it drags everyone else down.

It would be nice if we could just call a truce, discuss the research, treatment and diagnosis protocols, etc. Skepticism is heartily welcome (ie:patientx often makes really good posts w/out slinging mud), just not trolling...
2 cents,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rose2 » Thu Aug 05, 2010 8:01 pm

I will be forever grateful that I found TIMS and this CCSVI forum last year when I did. When discovery was fresh and energetic.
We still are, but it IS hard to read all of the great stuff thru all of the arguing.
I will not justify my what, why, when or where. don't have to. Tho I do wish EVERYONE would have the wonderful results I have had.
So many that write here do not want to venture forth without more data and then diss those of us who WANT to be the data.
I am data. Hear me roar.
;)
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Postby welshman » Thu Aug 05, 2010 8:13 pm

Obviously we have some "old timers" on this particular topic and I really don't know if I should even comment. I follow this site pretty much every day, I wish I had known about "TiMS" well before I eventually found it !!!!!!!

I would certainly apologise if anything I've ever added is negative in any way (I was going to post the interesting topics on the "CCSVI Locator" web site today but because they mostly dealt with negativity re CCSVI at least, I decided nmot to after reading the original post here - oops I just did what I said I wasn't going to !!!!!).

But seriously, I am a proponent of CCSVI - it's logical, it makes sense, it appears to work. So the way I look at the "Negative" press is that we (the "TiMS" group") need to discuss it so we can respond to it with others - our family doctors, our neurologists. If we can't discuss the negative stuff here and get the various opinions of the great people who provide input into "TiMS" , then how will we ever get respect for the possible benefits of this treatment ??
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Postby Lyon » Thu Aug 05, 2010 8:14 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:30 pm, edited 1 time in total.
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Postby rainer » Thu Aug 05, 2010 8:19 pm

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Postby Cece » Thu Aug 05, 2010 8:59 pm

I have to disagree, I think the majority of conversations here are positive, supportive exchanges. I'm on all the doctor threads, since I've been on several lists, and there is so much information and support and minute analysis of when everyone called and got called back! And everytime someone goes for a procedure, there are well wishes upon well wishes.

Though there are the threads that get hijacked or personal; I think we all know it when we see it and maybe reporting it to a moderator is the way to go?

The Facebook page is great too but things get scrolled down and lost quickly. It's a different format, and a better one for mass outreach, but I like the way conversations can be carried on here and that a new post will pop a conversation back to the top of the list.

I also think people behave themselves pretty well in Dr. Sclafani's thread...excepting maybe whatever that was between costumenastional and DrS...and that's all water under the bridge.... ;)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby MrSuccess » Thu Aug 05, 2010 9:15 pm

i had no idea '' thin skin '' was a symptom of MS. :roll:

Nice tho' , to read a certain Ex- Sunday school teacher admit to not always playing nice.

What say we dry our eyes .... and get back on track ..... which is exchanging MS- CCSVI ideas , experiences ..... positive or not :idea:

If you have a problem with Mr. Success ........ and his astute observations ....
feel free to keep on scrolling .........

But should you feel Mr. Success' opinions are not to your liking .....
I will be glad to hit it back and forth ......... :wink:

In a civil manner ........ of course . :idea:





'' I never stabbed anyone in the back ''



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Postby NotFound » Thu Aug 05, 2010 9:33 pm

Rose2 wrote:I will be forever grateful that I found TIMS and this CCSVI forum last year when I did. When discovery was fresh and energetic.
We still are, but it IS hard to read all of the great stuff thru all of the arguing.
I will not justify my what, why, when or where. don't have to. Tho I do wish EVERYONE would have the wonderful results I have had.
So many that write here do not want to venture forth without more data and then diss those of us who WANT to be the data.
I am data. Hear me roar.
;)
Rose


Hear, hear!

I still come here for most up to date news though. And even when people have something negative to share - it's a great resource!
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FACEBOOK

Postby concerned » Thu Aug 05, 2010 9:35 pm

OKAY!!!


Because of all your insane facebook based allegations, tomorrow, I shall create a facebook account and interact with my peers so that you conspiracy theorists can't use that ridiculous line anymore.

Furthermore, I can bet anyone here that stalking and threats on my life or some other similar silly behavior will occur as well.

In the mean time, if anyone wants to see my shitty bands myspace, go to myspace.com/humansoffplanetearth

I have a better band, but only that one is silly enough to engage in the online world.



EDIT: Today is my girlfriends birthday and tomorrow there's a secret show in the woods so maybe sunday I'll make a facebook.
Last edited by concerned on Fri Aug 06, 2010 10:24 am, edited 1 time in total.
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Postby elyse_peace » Thu Aug 05, 2010 9:57 pm

Nicko -
I'm sorry you are taking your leave from TiMS. I will miss your thoughtful input. I found this site late in my ms journey, and it's unfortunate that some folks here seem to be hellbent on bringing things to a standstill.
I wish you healing, wellness. Good fortune on your journey.
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