Is anyone familiar with the site patientslikeme?

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

Is anyone familiar with the site patientslikeme?

Postby notasperfectasyou » Mon Feb 09, 2009 8:53 pm

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
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Postby CureOrBust » Mon Feb 09, 2009 9:02 pm

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.
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Postby notasperfectasyou » Tue Feb 10, 2009 7:41 am

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
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Postby CureOrBust » Tue Feb 10, 2009 11:58 pm

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.
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Postby ursula » Wed Feb 11, 2009 3:02 am

CureOrBust wrote: So things move quickly, and a great deal are "OT" ie not about MS.


Yep - and a lot of prayers there, too....
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