I have been on the forum for almost 9 years now, had over 1500 long posts on the old forum before it crashed around 2005 or 2006. The new people here today cannot begin to imagine how active that forum was. People like Jethro, Gene, Brandy, Jerimy, Liz, Dick S, Marc M, etc. commenting on all of the new posts daily. There was no arguing, just constructive & helpful comments on each post. Kelley, back then the CIDP children’s forum used to be very active as well.
I have continued to read & post periodically, but not like I once did. I was part of that time frame when Alice got pretty beat up & I stood up for her, as my cytoxan protocol back in 2003 was so similar to the SCT & I believe that these two protocols do arrest CIDP. I have been off of all treatments since Sept. of 2003, & am stable. I received many private messages during that time, some not so nice. But I hold no grudges, we would not come here if we had all of the answers or needed no help. I don’t know why the forum has been so inactive… maybe with better treatments people are now recovering better & getting on with work, raising a family, etc.
But this is a place people come to for support, so let’s all keep it a nice & welcoming site. Besides, I don’t feel well enough to argue, LOL!