So, I heard some of you were still having trouble accessing some of the existing ME/CFS groups on Facebook that I included in my first post on the subject. I think we have worked out the problems now!
People said they couldn't find the ME/CFS - Pacing with a Heart Rate Monitor group, so I worked with the administrator of the group, and he decided to change it from a Secret group to a Closed group (with the current members' agreement) - this will still protect the privacy of its members (posts are visible ONLY to members of the group) while making it possible for people to find the group. So, if you are interested in joining the Heart Rate Monitor group, use this link - it should (hopefully!) work now to take you to the group's page - all you will see is the group's name. Just click on the "request to join" button, and the administrator will add you to the group.
As for the ME Mums and Dads group (for parents who have ME/CFS), the administrator decided to keep the group classified as Secret which means it doesn't show up in searches (and apparently, the link I provided doesn't work). So, here's what we'll do. She made me another administrator for the group. If you are a parent with ME/CFS who wants to join this group, e-mail me at jacksonde at comcast.net (I wrote it out that way to avoid getting spammed), and we will work together to help you find the group and get added to it.
So, hopefully, that will solve the problems - sorry for the inconvenience!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I have emailed you.
ReplyDeleteIs there some kind of setting in the HR group whether you want your membership in the group publicly known? Lots of my "friends" on Facebook are customers and I am not out to those folks. Or would it be better to just create a separate Facebook identity? Does your group membership appear on your profile as well?
ReplyDeleteRocalisa -
ReplyDeleteI have not received an e-mail from you, and it has been quite a few hours since you left this comment - maybe check to be sure you typed the address correctly.
Anon -
ReplyDeleteThe only way someone would know you are in this group would be if they went to the group's page. It's highly unlikely that someone you work with would even find that group unless they also have ME/CFS.
As far as I can tell, the groups you belong to do not show up on your profile. I don't see mine listed anywhere, at least.
Hope that helps -
Sue
Hi all,
ReplyDeletePlease feel free to check out the facebook page:
http://www.facebook.com/#!/WHAT.ABOUT.ME.THE.FILM
Or there is a community over at:
http://vimeo.com/groups/whataboutme
Many thanks