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Is anyone familiar with the site patientslikeme?

Posted: Mon Feb 09, 2009 7:53 pm
by notasperfectasyou
Just wondering. I stumbled on it and I'm wondering if anyone here has tried it out. I can see where it might be interesting, but I can also see where it might be a huge time consumer. Ken

Posted: Mon Feb 09, 2009 8:02 pm
by CureOrBust
I'm actually a member, and have seen someone else from here there (cant remember her user tag, but she has a photo with red hair I think, and is on Tysabri).

I like their "progress" tracking, however their forum appears to be a lot less organised than here. It also has a feel of more of a support group, while this site has more the feel of people looking for the unattainable answers.

Posted: Tue Feb 10, 2009 6:41 am
by notasperfectasyou
Thanks Cure. I'm in the process of learning the difference between support sites knowledge sites. You make a clarifying point for me that I need to think about. Do you feel that using that site is helpful for you or for others? I get the impression that it's just another place where folks will tell me how stupid I am for thinking antibiotics can help or even reverse symptoms. Ken

Posted: Tue Feb 10, 2009 10:58 pm
by CureOrBust
I do not think anyone will tell you, you are stupid there. It appears to be too supportive for negative behaviour like that. Not that I have read their forum all that much.

It has an almost FaceBook feel to.

I joined because I thought it may simplify keeping a record of my progress and medication in one place. I have only updated it once. When I joined I got a barrage of welcome notes from long time members. I posted the Zamboni article up there which led to a 15+ page thread here, and it originally only got 2 or 3 responses. There appears to be only 1 forum, a LOT of members and a lot of posts. So things move quickly, and a great deal are "OT" ie not about MS.

Posted: Wed Feb 11, 2009 2:02 am
by ursula
CureOrBust wrote: So things move quickly, and a great deal are "OT" ie not about MS.
Yep - and a lot of prayers there, too....