Informal statistics of our own

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

Informal statistics of our own

Postby JoyIsMyStrength » Thu Feb 11, 2010 2:53 pm

I had an idea. :idea: It may have been mentioned before but a search for statistics turned up hundreds of responses so if I'm duplicating efforts please feel free to delete this, ok moderators? :-)

I know we have a tracking project thread but I am not convinced that it is complete. There could be many reasons for this including the possibility that people fail to post negative experiences as often as positive ones, or they find the questions intimidating. Who knows?

What about something far simpler, not to replace the tracking thread which is awesome, but just for the purpose of doing an informal count of how many folks have been tested, where (ie, according to protocol or not), and the results -- positive for CCSVI or not? It could be a poll even.

One danger is that trolls could come in and try to skew it. However I can't help thinking that the numbers here on this forum are higher than the Buffalo results and I would like to know if I'm right. This will never be seen as scientific of course.

If we're going to do it we may as well do it right so chime in with any thoughts for or against.

Thanks,
Pam
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Postby cah » Thu Feb 11, 2010 4:01 pm

Pam,

we discussed this idea (for the german forum) and came to the conclusion that this is not a good idea. Because if there are non-scientific statistics they can easily be mixed up with real science (incomplete quotes etc.). The effect would be either that one comes to the conclusion that if a part is not scientific, the whole thing isn't science at all. The other effect could be that someone considers our statistics as representative and reliable, which they never will be, and maybe draws wrong conclusions of it either way.

I understand your demand, but there's already enough misinformation out there. The posts in the tracking thread are real, and they show some info that statistics never will.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby JoyIsMyStrength » Thu Feb 11, 2010 4:04 pm

Oh not a demand, just an idea. :)

Your points are well taken, thanks very much. Makes sense.
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Postby cah » Thu Feb 11, 2010 4:09 pm

Perhaps demand is wrong. I meant a wish... the wish of knowing more NOW. It's oh so strong in me, too! But I think there's nothing we can do but being as patient as we can and supporting the research.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby thisisalex » Thu Feb 11, 2010 4:16 pm

please go to Andrew's topic to fill his poll first, because he would like to write an article about the postural connections of MS! :)

http://www.thisisms.com/ftopict-9774-postural.html

thanks
alex
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Postby Vonna » Thu Feb 11, 2010 4:44 pm

Hi Joy,

This video is slightly off your subject, but then again, it’s not.
I posted it on YouTube a few weeks ago. This is only the beginning of the story.

http://www.youtube.com/watch?v=G5XEILALKws

I studied in depth who pays for MS research. By the time I was done, I was disgusted. This video only tells a tiny portion of the truth. I plan to share more ASAP, but I realized that we need to be our own advocates, and started working on the website called CCSVI Worldwide Victory.

How this relates to your post is that in the video, I talk about NARCOMS. It’s a database of information about MS patients. Guess how gets to access it. Basically, anyone benefiting from MS patients. Otherwise known as “members”.
MS patients are NOT given this privilege.

I understand the argument that the data would not be “accepted” and all that, but I believe it is EXTREMELY important that we have our own numbers. If for no other reason than that we have the information.

I have started collecting a database of people with MS from around the globe. I am getting real names and e-mails. This system could easily work very much like NARCOMS, except we get the information, not a pharmaceutical company. All we would need to do, is send out an e-mail asking the questions we would like answers to. The database only has about 40 names so far, but it was only started a few days ago! It could grow very quickly if people showed an interest in it, and began to spread the word.

http://ccsvivictory.club.officelive.com/Important.aspx

Vonna
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