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Posted: Mon Jan 12, 2009 12:50 pm
by Miss_Feisty
HarryZ: I understand your point completely.
The battle of the revenues is why the competition strikes. It is a pleasure to hear from someone who has watched the cause for so many years. :)

Notasperfectasyou: regarding Accelerated Cure
We are making the samples and data available to researchers studying the causes of MS and building a database of the experimental results obtained in these studies.
It is a good study and a good project. But what is key..... researchers.
Their amazing work could possibly, maybe, hopefully benefit us. This is great and wonderful, but in the mean time I will use the "search" function on TIMS.

I found this site after looking through a myriad of crap online (pardon my lack of a better word). Sponsored crap that is. I had been reading for awhile before registering. While dealing with my official dx (in 07), I have come to learn I benefit more from the experience of others than the grandiose corporate output of ms treatment material.

I believe a site like this is beneficial because we can read, share and plainly feel that we are not suffering alone.

The imaginary database I would like to see may not be a reality, but that is acceptable. Just because I can put on a crown, doesn't make me a princess. In a perfect world, no one would suffer from ms or anything else for that matter.

Posted: Tue Jan 13, 2009 1:26 pm
by mrhodes40
There is already a huge data base being collected at the NARCOMS..North American Research committee on MS. They are assembling data on people with MS and have been for a long time now.

I fill out a huge detailed data link 2 times a year. They ask every kind of question you can imagine.

If you join and also add your information you get the MSQR, the MS quarterly report which keeps you up on new research and lets you know what sort of number crunching has been done in the NARCOMS data base recently.

See this data base and information here
http://www.mscare.org/cmsc/CMSC-NARCOMS ... ation.html

There's alink there to read the MSQR to so you could see what it happening in the publication. I find it refreshing vs the NMSS--no ads.

Recent research findings from the data base can be read here
http://www.unitedspinal.org/publication ... -findings/

Notice that the data base has 32,000 MS patients in it. I am one of those.
Notice that they recently looked at birth month to come up with some interesting data about how that impacts MS risk.

It sounds like this might be something you'd like to paritcipate in!
marie