Wow, has this forum gone everywhere lately?

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

Postby Johnson » Sun Jan 03, 2010 3:17 am

Brainteaser wrote:Didn't escape anyone, I think Johno - but we're all involved in this unbridled proliferation of threads. Good on Jay for raising it.

Andrew - can't speak for others, but no-one seems to want censorship; just a bit of order.

Phil

Hey Phil,

I wasn't knocking Jay. Take the Aussie tongue-in-cheek, throw in some British understatement, add some Canada Dry, and... oh hell, never mind. Grin

I agree with Phil and you about censoring, Andrew. And order.
My name is not really Johnson. MSed up since 1993
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Postby LR1234 » Sun Jan 03, 2010 3:18 am

Maybe if we have a newbies board in the CCSVI section that would solve the problem. We could call it new to CCSVI post questions here! or something

If the mods feel that the question/topic raised in the newbies board is good enough to be posted in the main board then we can do that afterwards!

(hopefully all the kind of irrelevant stuff will be contained then to the newbies board then)
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Postby patientx » Sun Jan 03, 2010 9:06 am

tazma wrote:I saw that post on another site, I wouldn't pay him much attention, he's negative on almost any new idea and spews opinions without facts.

If he or others share that opinion, well not much you can do. You can't mold this site to make people like that happy.


You're right. I just thought people might like to see how this is being perceived elsewhere, because that particular poster is not the only one. On the specific question of the "kookiness" of bloodletting, yes, bloodletting is an accepted treatment for hemochromatosis and other causes of iron-overload (I was amazed when my sister mentioned a case using leeches where she was doing some clinical work). But this is used for excess serum iron levels. I am not aware of MS patients commonly having raised serum ferritin levels.

True, my comments lately can be perceived as inflammatory. But as I have read some of the CCSVI papers more carefully, I have noticed things that don't explain the pathology of MS, or things that don't always add up. And that is why I continue to post; to convince myself that this theory is viable.

Since the CTV news program, many new people have joined and that is good. But some, I think, are what might be called "trolls." Some haven't even been diagnosed with MS, and are telling members here that they are too passive for not picketing hospitals to get CCSVI treatment. I took exception to this criticism, because, as I have learned over the last year and a half, most members here are anything but passive. Just look at the number of people willing to participate in clinical trials, or try their own treatment programs.
Last edited by patientx on Mon Jan 04, 2010 6:43 am, edited 1 time in total.
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Postby tazma » Sun Jan 03, 2010 10:22 am

Yes, that was a good example of how some perceive this site. I actually thought the poster was a troll on the other site!

You're all doing a great job here and I wouldn't want this site to become heavily moderated. So many forums have lost members because of "rougue, Sarah Palin" moderaters. Cracked myself up with that one.
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TIMS is like enjoying enjoying an excellent Tennis Game!

Postby Ruthless67 » Sun Jan 03, 2010 10:29 am

Hello TIMS,

Since stumbling onto the TIMS (Court) forum in 10/09, I’ve enjoyed watching and participating in quite a few (Matches) thread discussions. I have never believed we should just take someone’s word as the definitive answer without doing our own personal research. (That’s how I fell in here in the first place!) I, personally want the questions, friendly disagreements and discord as well as the answers, explanations and tolerant agreements we sometimes form. That’s how we learn, move forward and come up with answers!!
I respectfully agree we need to disagree to move forward! That’s why Zamboni lobbed out the first ball across the court and said “Research, research, research!”

Respectfully,

Lora
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Postby Lyon » Sun Jan 03, 2010 10:50 am

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Postby ozarkcanoer » Sun Jan 03, 2010 2:30 pm

This is a forum open to the general community, not a closed scientific ivory tower. I think it is kinda nice that everyone gets their say, "right" or "wrong" (let's debate "proof" and "right and wrong" for another hundred posts, LOL).

It's also nice that we are presented with links to scientific papers here that we can read and mull over. It's fun to be amused at different people's foibles and all the excitement and speculation and even the anger. We are a forum, a crowd, and a mob.

Most of us know that there is real research going on right now about CCSVI that will confirm the hypothesis or not. All I can think about is Buffalo, Buffalo, Buffalo. For other people it's Poland, Poland, Poland !!! BTW, "How many Pollacks does it take to fix CCSVI ??". No disrespect intended... much respect intended... Chopin was Polish and Lech Walesa, bless his heart, was Polish !!!

Let Chaos reign !!!!!!!
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Postby Lyon » Sun Jan 03, 2010 3:17 pm

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Postby ozarkcanoer » Sun Jan 03, 2010 4:11 pm

Lyon,

Believe me I understand desperate hope.

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Postby Lyon » Sun Jan 03, 2010 4:40 pm

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Postby ndwannabe » Sun Jan 03, 2010 5:23 pm

tzootsi wrote:I agree with Fiddler - yes this forum has gone off on a few tangents in the past few months, but it's still the best reading on the web. .


I love the fact that I came across this particular forum. I learned in three days more than I would have learned in weeks, thanks to the pool of knoeledge and personal experience on the subject.

That's from the newbie's perspective :)
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Postby patientx » Mon Jan 04, 2010 7:02 am

Just for the record, I am against censoring of posts, and I wasn't suggesting this be done.

From what I have seen, I think the moderators have done a great job, balancing the need to delete some posts that haven been completely inappropriate.
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