Central MS Info Repository...

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Central MS Info Repository...

Postby ikulo » Sun Mar 20, 2011 10:32 pm

Since my diagnosis in 2009, I've put in a lot of time researching MS. At times it's almost an obsession, and not a day goes by that I don't do some research about MS. Whether it's treatment, etiology, nutrition, mainstream treatments, etc., there is a wealth of information out there. However, when I sit down to find information, I have to cross various sites... I go from Google, to PubMed, to TiMs, MsWorld, DirectMs, etc. After a while, I have 20 windows open and I'm trying to cross reference everything. This gets frustrating.. and it got me thinking...

Would it be a good idea to try to set up some sort of central site where MS information could be posted? I'm envisioning a Wiki type website. It would be maintained by this well-educated community.

So, for example. Let's say you're a PwMS and you want to learn about helminthic therapy as it relates to MS. Currently, there is a wikipedia entry for Helminthic Therapy, but that only has a one liner about MS. Googling HT give you a list of various websites, some of which lack credibility. You can find some stuff on PubMed, and some information here. But it takes forever to search through everything.

Anywho. Some of you know how frustrating it can be to learn about a topic.

Does anyone think it would be a good idea to start a wikipedia type website strictly for MS? Each page within could contain general information about a topic, list all studies, completed trials, current trials, background information, maybe even some personal experiences. So, for example, there might be one page on helminthic therapy. The page could give a background on helminth, the theory behind why such a therapy would benefit MS, the up-to-date results on studies, and much more.

I have limited web knowledge and have some space online to make this happen. What do you guys think?? Good idea, bad idea, thoughts?
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Postby Bender » Mon Mar 21, 2011 8:39 pm

I certainly don't think it would be a bad idea, but I think it would be hard to use since MS acts so differently person to person. In general I always like more information but I can tell you from my own research after my diagnosis that I'm not sure having more general information will be as helpful to people as one would like. That said something wikilike could be a great boon to researchers.
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