tag:blogger.com,1999:blog-22576999.post8271844729110219197..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: New Online Groups for Teens and Parents!Sue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-22576999.post-88748631977584848422011-10-19T22:09:36.837-04:002011-10-19T22:09:36.837-04:00Same problem, at least for the HR monitor group. :...Same problem, at least for the HR monitor group. :(Suenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-47005052411701071122011-10-19T09:12:39.054-04:002011-10-19T09:12:39.054-04:00OK, I may have figured out the problem with the li...OK, I may have figured out the problem with the links. I use a secure connection for Facebook, so those links I posted start with https.<br /><br />Try dropping the "s", so ME Mums and Dads would be:<br /><br />http://www.facebook.com/groups/103865043032452/<br /><br />And ME/CFS-Pacing with a Heart Rate Monitor would be:<br /><br />http://www.facebook.com/groups/ME.CFS.HRM/<br /><br />Can someone try one of those and let me know if it works so I can correct the links in the post?<br /><br />Sorry for the problems - hope this does the trick - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-11541265318295552692011-10-19T08:44:34.560-04:002011-10-19T08:44:34.560-04:00Thanks for letting me know the links aren't wo...Thanks for letting me know the links aren't working for you. I have no idea why, but I have contacted the administrators of both groups for some help. I will post new links here (and correct the original post) as soon as I hear back from them. Sorry about the extra trouble - I was trying to keep things simple!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-10387573910540931342011-10-18T18:12:44.005-04:002011-10-18T18:12:44.005-04:00Hi, Sue
That link you posted redirects here:
htt...Hi, Sue<br /><br />That link you posted redirects here:<br /><br />https://www.facebook.com/groups/ME.CFS.HRM/<br /><br />Which has a title of "Content not found" and this printed on the page:<br /><br />This content is currently unavailable<br />The page you requested cannot be displayed right now. It may be temporarily unavailable, the link you clicked on may have expired, or you may not have permission to view this page.Suenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-23373188901236312092011-10-18T17:32:31.971-04:002011-10-18T17:32:31.971-04:00Sue-
I had the same problem with the ME Mums and D...Sue-<br />I had the same problem with the ME Mums and Dads page as Sue had with the Pacing with a Heart Rate Monitor group<br />Alice ZacariasCalicoZhttps://www.blogger.com/profile/17773509044392534779noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-46412886488238392802011-10-17T10:04:28.650-04:002011-10-17T10:04:28.650-04:00David -
Thanks for the tip! Since I'm not a...David - <br /><br />Thanks for the tip! Since I'm not a "young person", even by that definition, I didn't know about healkick.com. I did think there was another sort of online spot for young people with CFS but didn't remember what it was.<br /><br />Thanks for sharing that!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-17881828045026670082011-10-17T10:03:15.518-04:002011-10-17T10:03:15.518-04:00Hi, Sue - Here is the link again:
https://www.fac...Hi, Sue - Here is the link again:<br /><br />https://www.facebook.com/profile.php?id=1487167317#!/groups/ME.CFS.HRM/<br /><br />but maybe because it is a "Secret" group (i.e. doesn't show up in searches) it won't work. I thought it would, but please let me know if it doesn't, and we'll try it from a different route.<br /><br />Thanks - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-57944660411330100582011-10-17T00:48:59.714-04:002011-10-17T00:48:59.714-04:00Thanks Sue. I actually started setting up a Facebo...Thanks Sue. I actually started setting up a Facebook page too but got sidetracked...and I'm not even ill myself and only have one sick kid! So thanks and I'm off to check it out...Anniehttps://www.blogger.com/profile/09677903765123497474noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80502358147129824802011-10-16T22:48:56.036-04:002011-10-16T22:48:56.036-04:00you didn't mention healkick.com -- it's a ...you didn't mention healkick.com -- it's a full social networking site for "young" people (40 y/o or younger) with neuroimmune diseases (Lyme, CFS, etc).Davidhttps://www.blogger.com/profile/10778342601996392913noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-45986248905798190442011-10-16T22:48:03.689-04:002011-10-16T22:48:03.689-04:00Hi, Sue
The link to the Facebook HR monitor group...Hi, Sue<br /><br />The link to the Facebook HR monitor group goes to some kind of "page not found" type page... Typo? Or do you have to join the group first, or??<br /><br />SueSuenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-18141508501963200162011-10-16T17:50:27.513-04:002011-10-16T17:50:27.513-04:00Hi Sue - thank you so much for creating these Face...Hi Sue - thank you so much for creating these Facebook groups. Your timing is perfect as we have been totally stressed out here with our daughter and her illness. I know what you have been going through because we are just as devastated here. You know you have to do something different but just don't know what because it seems like everything makes her worse. So, anyway, it will be so nice to really be able to connect with others that get it! I do use other fb groups but mostly for POTS and fibromyalgia. Thank you for everything!!!!! Kim DraghiKim Draghihttps://www.blogger.com/profile/02947021725490291585noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-72254601236054175842011-10-16T16:09:53.339-04:002011-10-16T16:09:53.339-04:00Hey Sue!
I thanked you in an email, but I just wa...Hey Sue!<br /><br />I thanked you in an email, but I just wanted to thank you again for setting all of this up!!!<br />I'm excited about it. <br /><br />I'm so, so, so sorry that things have been so very hard lately. But, I am VERY happy that you have such wonderful support around you!<br /><br />Goodness, my heart aches for Jamie. I can understand what he felt when he wrote that. <br />For me poetry has become a powerful form of expression and way for me to work through the good and the bad of life.<br />I hope that writing is therapeutic for him too. <br /><br />I'm praying for you both.<br /><br />*hugs*Sarah Dawneéhttps://www.blogger.com/profile/07705550127874942327noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-27554180221798784422011-10-16T13:07:12.551-04:002011-10-16T13:07:12.551-04:00Oh wow - looks like my fonts went crazy in this po...Oh wow - looks like my fonts went crazy in this post! Too much cutting and pasting, I guess. I hope it doesn't bother anyone too much - no energy left to fix it!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.com