Buffalo Study

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

Buffalo Study

Postby Kuly » Tue Jan 26, 2010 12:40 pm

Does anyone know when the 1st set of results willvbe released?.....have had MS for 15 years now SPMS but am anxiously waiting to cease the progression and @ 44years of age who knows? :P


Regards,

Martin
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Postby jay123 » Tue Jan 26, 2010 1:30 pm

OK, everybody - I give up. let's turn this forum into a chat room instead of a forum with threads! lol - Then, everybody can discuss anything anytime and get different answers constantly!!!




Kuh - supposedly with the next few weeks.
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Postby ozarkcanoer » Tue Jan 26, 2010 1:37 pm

jay123, Please be kind to the newbies. We were all newbies once.

Kuly, the results of the first 500 participants in the Buffalo study will be announced at the beginning of February. We don't have an exact date yet. Just keep your eyes peeled on this site and also on the CCSVI Facebook page. There is a lot of interesting information in the stickies and other older threads.

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Postby jay123 » Tue Jan 26, 2010 1:42 pm

But couldn't you also have said to just please read, search and then ask questions? Especially in this case where another identically labeled thread is just a few threads below this one!

I vote we make it a chat room! LOL

and I did answer their question for them.
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Chat Room

Postby Kuly » Tue Jan 26, 2010 4:53 pm

Hi Jay123,
sorry to have not done a search but was @ work and they monitor internet usage guess should have waited and searched @ home.

Thanks for cutting me some "slack" ozark canoer! ..can't wait for the results.




Kuly 8)
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Postby jay123 » Tue Jan 26, 2010 5:10 pm

Kuly,
Sorry it wasn't meant personal to you at all, I thought Ozark over-reacted. I didn't 'chastise' you at all I made a general comment about the state of our forum, and I did even answer your question. We have just had a rash of duplicate threads lately and it gets annoying that 1) people don't try and find the info themselves first (which also allows them to add info to an existing thread which might be useful) and 2) that the mods aren't really doing any moderating like moving unrelated posts out of CCSVI, making stickies of posts such as 'advice to newbies' and freezing posts that are really off topic like aluminum cans causing ccsvi and blood letting!

This has been the best forum I have ever participated in (mostly due to Joan's tireless work!) and I hate to see it getting messed up.

And right after you posted that thread, someone else posted another duplicate thread right away that duplicated Cheerleader's thread!

That's why I said i give up, and talked facetiously about turning this in to a chat room!
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Postby onesickrace » Tue Jan 26, 2010 5:48 pm

if i may, the search button isnt the easiest thing to use, i still havent figured it out. according to the "search button" theres nothing on this site regarding "CCSVI" im sure im not the only non-computer savy person on here... add in the cog fog and voila... you feel like a 90 year old who has never touched a computer... just sayin...
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Postby jimmylegs » Tue Jan 26, 2010 7:45 pm

please read the search item in the FAQ sticky:
http://www.thisisms.com/ftopict-5284.html
and be sure you use the forum search (top) NOT the site search (under modules, top left)
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Postby thornyrose76 » Tue Jan 26, 2010 8:04 pm

There's a lot of info in this particular forum and it is a bit overwhelming, you'd be reading forever and a day to read everything, so if a question is repetitive, let the asker know, let them know where to specifically look, as someone did me. I thanked him and promptly followed the link. :D We're all in this boat together!
Last edited by thornyrose76 on Tue Jan 26, 2010 8:07 pm, edited 1 time in total.
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Postby sbr487 » Tue Jan 26, 2010 8:06 pm

I think both Jay and Ozark are correct ...
A newbie is likely to make mistakes (I am guilty of quite a few)
At the same time, cluttered info gives a bad image of this forum.
I came to this forum by chance and I was amazed by the technicality of discussions (for a moment I thought these are Dr's)

Anyway, I think the solution would be for admins to regularly label such threads as duplicate and probably demote their ranking. This is just in theory. I dont know how to implement. In other technical forums, admins keep moving threads from one forum to other since newbies keep posting in irrelevant forums
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Postby jay123 » Tue Jan 26, 2010 8:32 pm

sbr487 wrote:I think both Jay and Ozark are correct ...
A newbie is likely to make mistakes (I am guilty of quite a few)
At the same time, cluttered info gives a bad image of this forum.
I came to this forum by chance and I was amazed by the technicality of discussions (for a moment I thought these are Dr's)

Anyway, I think the solution would be for admins to regularly label such threads as duplicate and probably demote their ranking. This is just in theory. I dont know how to implement. In other technical forums, admins keep moving threads from one forum to other since newbies keep posting in irrelevant forums


Thanks, thats my point that the mods should get much more active here!
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Postby Johnson » Tue Jan 26, 2010 11:46 pm

jay123 wrote:
Thanks, thats my point that the mods should get much more active here!


I would always use could over should, but perhaps we need to cut the moderators some slack? After all, they are volunteers, with MS, and may be suffering their own "cog fog"...

Grin
My name is not really Johnson. MSed up since 1993
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Postby whyRwehere » Wed Jan 27, 2010 12:14 am

It seems to me, we keep having thread after thread about newbies and searches, and duplicate threads and explanations of what we meant by what we said. Just try not to read everything and the best stuff will stay at the top...
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Postby CureIous » Wed Jan 27, 2010 12:30 am

sbr487 wrote:I think both Jay and Ozark are correct ...
A newbie is likely to make mistakes (I am guilty of quite a few)
At the same time, cluttered info gives a bad image of this forum.
I came to this forum by chance and I was amazed by the technicality of discussions (for a moment I thought these are Dr's)

Anyway, I think the solution would be for admins to regularly label such threads as duplicate and probably demote their ranking. This is just in theory. I dont know how to implement. In other technical forums, admins keep moving threads from one forum to other since newbies keep posting in irrelevant forums


I have yet to see an internet forum since 1998 that didn't ebb and flow. Most of the time it's pointless to micromanage them, just gently direct and guide as best as possible. If really out of control, that's what mods are for. Otherwise I trust in people's innate abilities to "get the gist" after awhile. By constantly responding to innate comments and/or threads that are redundant, they are then bumped to the top. Kind of defeats the whole purpose. Less is more. Always. PM's are even better. Posts can be self-edited too. Bonus. Without a 36 point type at the top saying "Newbies, do NOT post without reading this first", we will keep having this discussion well into the future. Academic at best.

Btw welcome Kuly. Tell us a bit about yourself maybe now that we got us a thread going discussing your thread... :)

Mark
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 CureIous » Wed Jan 27, 2010 1:18 am

How about a search primer while we're at it, that might be a bit more helpful.

PART ONE:
Image
*********************************************************

PART TWO:
Image

*********************************************************
PART THREE:
Image


There are many more good posts to read under that one. This of course speaks to searching in general not just the buffalo study. Enjoy!
Mark.
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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