What has happened?
April 24, 2013 at 4:52 pm
In the last 4 weeks there have been 4 posts. I wonder where we have all gone? Am I missing something?
April 24, 2013 at 7:05 pm
Who are “we”? Different people who used to post move on for their own personal reasons. Some left quite awhile ago because they didn’t like the new website software. Others left because they became more interested in social networking, it seems. Perhaps in recent weeks some were preoccupied with their taxes.
April 24, 2013 at 7:06 pm
This probable should have been posted under General Questions.
April 24, 2013 at 11:20 pm
I’ve noticed that too Bill. It’s really too bad, because this was such an informational site and so helpful to many. I feel on the facebook/social media site, the social aspect is there but informative information hard to find. Here, the information is here but tedious to look for without the search feature.
the cidp/sct fb page has a nice set up that includes both—easy to find information and discussion, but the cidp fb page is mainly discussion.
Wish we could have the best of both worlds….this site, with the search feature, private messaging, and a live chat. 🙂 Lori
AnonymousMay 4, 2013 at 9:59 pm
I miss the support from the large number of former members and the many active responses this site used to have. It was wonderful when I was newly diagnosed, in need of info from other CIDP’ers and then in turn could offer support to others. I think when this site was redone so many got frustrated trying to log in and not having private messaging for asking personal questions.
There was a member posting at Northwestern who was just getting ready to under go stem cell (2010?) and then I didn’t hear from him again. Think his name was “Yehan”? I hope he’s OK.
May 5, 2013 at 10:46 pm
limekat–yes that was Yuehan, he used to give a lot of valuable info on this site. He helped me tremendously with information when i was planning my trip to the mayo clinic.
I inquired as to how he made out at northwestern too and found out he may be posting on the sct/cidp facebook page.
That is a very informative page, many posters who used to be on here but have undergone sct are on that page.
There is also a few cidp groups on facebook, if you have a fb acct and put it in your search engine a few will come up. They are open groups, you can read the posts but cannot comment and join in the discussion unless you join the groups.
i think i remember reading somewhere that there were plans to improve this site by adding messaging and a search feature. Lori
AnonymousMay 6, 2013 at 12:10 am
Thank you…guessing Yuehan did well having SCT?? Please let me know if/when Yuehan does post on FB? I’m interested in what he experienced/recovery.
Yes, we used to have an active forum. Over half the members suddenly disappeared when this site was restructured?? All the incredible info from the other site is gone?? I was helped immensely by this forum when my IVIG was stopped due to medical insurance issues and many other times too.
It would be good if this site had PM again and the fonts was more readable. CIDP has taken some of my vision. It would be wonderful if this site regained its membership because it needs it.
May 6, 2013 at 2:41 am
The old threads are still here, it’s just extremely difficult to find things without a functioning search. The display of threads or posts for a particular member does not work for me, but that may be due to my old IOS level.
The old newsletters are still here, but there is no link to them, so you need to know where they are. This is a pretty easy thing to recover — I don’t know why they haven’t done it.
May 6, 2013 at 8:17 pm
I don’t think the foundation advertises this site much. In the last newsletter, the Facebook page was mentioned but not this forum. I’m guessing they are giving up on it?
June 4, 2013 at 12:21 am
CAVanTil, to begin with, you need to start a new thread in the CIDP forum, and describe your situation or pose your questions.
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