Questions on site privacy

Hi Guys,

Since broadcasting the reminder on site privacy we have had several questions. To reiterate, while LWE is a closed 'members' only site, discussions, blogs, content in general and user names are 'out there' in the public domain. This means that if you use your real first and last name when posting, someone who searched your name could access a Ben's Friends EM discussion about your latest pains complete with your photo. That is why we encourage all of our members to create a unique user name at sign up. If you missed the small print and that opportunity when you registered, please feel free to change your user name at any time.If you need help, contact Alina, Nel or myself (mads) by chat and we can walk you through the steps.

So, to clarify:

1. What is private? To restrict viewing on your profile pages, blogs, photos, and videos- click "Settings" and then "Privacy". Note that your profile and comment wall are only available to members . Inbox is confidential and just for your eyes :-)

2.What is public? Postings in discussion forum and blogs are all 'out there' in the public domain. Your user name is also 'out there' and searchable.

3. Tools?

Use settings and privacy option - members, just my friends or just me are your options for profile, blogs, photos,

You can always edit your post before and after uploading.

You cannot hide your profile photo from the discussion forum, but you can change it, or decide to put an avatar or leave it blank.

99% of us found our way to LWE by putting symptoms, treatments, conditions etc. into a Google search. If we stop this signposting many EM'ers, medical profession, caregivers, and relatives will never find us or receive the support, information and friendship they desperately need. Signposting is imperative if we want to help others and raise awareness of this miserable syndrome .

Thank you all for sharing.

Moderator team