Reply To: Denver CIDP Specialist

September 1, 2017 at 5:37 pm

JK – Yes, facebook profiles do require your real name, and it took me months to join the groups for that reason. But the groups are closed, so no one can see your posts unless you are accepted into the group. Also, the part of your profile that shows the groups you’re in does not include closed groups. So to see that I am in the group, you’d have to pull up the group, and it seems unlikely any of my casual acquaintances would do that since most people don’t even know what CIDP is. However, I think this forum is searchable by non-members from search engines, and listing an email address or full name would make that searchable on the internet, would it not? Let’s say I applied for a job and someone googled my email address. Maybe my thinking isn’t 100% logical, but I guess I don’t feel comfortable listing an email here. It’s too bad you can’t opt into private messaging on this forum. I have found the 3 facebook closed groups to be very active and helpful.