Myspace page & Frappr

[Guest guest]

Thanks, . You're a good sport! I know that posting info in

cyber space is a bit like hanging out naked in your tinted glass home,

but it seems that we've made an effort to keep our PSC info reasonably

safe. Like choosing not to put our Frappr map in the Frappr directory.

I'm not feeling paranoid about the myspace thing, but just thought it

would be one more step toward privacy if we avoid putting our map out

there in the big world. --

jmhette2 wrote:

> Just a note...I removed the frapper thing from my myspace page. No

> worries, I'd just put it on there for people to see that a lot of us

> have it. Anyway, just wanted to let you know it's off. :-)

>

>

> in NE

> 24

> psc dx 8/07

> (probable pbc overlap 10/06)

>

>

>

>

[Guest guest]

I thought the myspace thing was fine - I doubt the myspace crowd cares

about psc, plus I think it's tapering off with facebook and the other

social networking sites.

Now here's why it doesn't matter - The Frappr site is linked from the

Yahoo group splash screen which is also where PSC-support.com has the

domain redirected. So if you search for "psc frappr" The link to the

frappr site is on the second search result and I can view all the names

and locations without logging in to either yahoo groups or frappr. And

yes, I deleted all my cookies first.

I could care less either way, someone looking for me searching either

"mike zaloudek disease" or "mike zaloudek" has the search results

covered with PSC medical info.

Like Arne said - if you want the info, you can get it. In reality,

someone could sign up to the Yahoo groups site, as if they had PSC,

mine all the info there on a particular person or take it and create a

website and publish all the medical info on all the members in an

organized way, so there's no privacy against a determined person.

MikeZ

Gaiatrek wrote:

....Like choosing not to put our Frappr map in the Frappr

directory.

I'm not feeling paranoid about the myspace thing, but just thought it

would be one more step toward privacy if we avoid putting our map out

there in the big world. --

jmhette2 wrote:

> Just a note...I removed the frapper thing from my myspace page. No

> worries, I'd just put it on there for people to see that a lot of

us

> have it. Anyway, just wanted to let you know it's off. :-)

>

>

> in NE