My Nonprofit Reviews

I joined this group initially because I suffer from chronic cluster headaches. On November 30th, 2015 at approximately 5pmish, their "president" made a post about another Facebook GROUP, (not a non profit) alleging that they were purposely posting bad reviews on this site. Out of 46 reviews, 43 reviews were 5 stars. But the 2 non 5 star reviews were enough for him to post negatively about the other FB group, and added a link to this site to encourage members post reviews. Since I thought 43 out of 45 reviews were 5 stars, I simply asked what the big deal was, considering most businesses cant obtain that kind of high ratings. Once I asked, I was questioned, questioned about why I was in their group (had been for years). I was accused by their president of having "issues"...I was immediately told that they had no obligation to me or me to them and immediately was accused of having s bad opinion of them (which I did not at the time). I explained I had had a bad experience with one of the admins, and you know, everyone is human. I asked why we ALL couldn't come together since Cluster Headaches is such a debilitating disease. I thought, the more people, the more ideas, would lead to a better treatment approach.
When I stated I had shared my story (within this group, which everyone does) before, and my only issue was the pain, the president replied with "I was never made aware of any issue you had before now, but you seem to have many." He was on my friends list on my personal FB page and he and I had talked briefly in the past. I felt insulted and that he was attempting to discredit me. I also asked why a non profit support group would get so bent out shape over 3 negative reviews. At that point, other members were responding and trying to deflect by explaining how a non profit works. Since I'm the Vice President of a non profit youth sports organization, I do know how it works. I was trying to get answers as to why the president was so upset over 3 bad reviews? Their were several exchanges, mine were cordial, his not so much. I went to reply and i couldn't. That is because he removed me from the group without warning. If asking legitimate questions, gets you booted from a FB group, a) I really don't want to be there, and b) I feel badly for all the other members that may be to afraid to ask a question.
Their president was very rude, as was on of the female admins who sent me a private IM warning me to watch what I say...what??
Apparently, this is still happening to many individuals...individuals in pain looking for answers. I should have reviewed last year, but I'm tired of seeing people get harassed and hurt feelings.
Just as a disclaimer, I am in SEVERAL Facebook groups dealing with cluster headaches and facial pain. I am not an administrator of any FB group, I am not an administrator for ANY non profits dealing with cluster heads....I was just a regular person, a patient per se.
I still suffer from Cluster Headaches....since the age of 4, so about 37 years. All I want is a cure, or an effective treatment option.
I've nothing to hide - Candi L

CHSG closed Facebook page allows the admins to heavily censor information and dissenters. If you do not tow the line and wish everyone "pain free hugs", they either PM you and remind them of their policies (even if you haven't violated them), or they publicly shame you. I personally gained no valuable knowledge from them. There are several different groups on Facebook that are 100 times more helpful. If you ask a legitimate question (especially one they can not answer), they respond and make you sound like an idiot, then they kick you out. Doesn't that sound like a wonderful support group? For individuals with CH, it is hard enough to find support...but to find a group of Cluster Headache sufferers that intimidate and bully anyone's who dares ask a non-threatening, non-provoking, legal, just out of curiosity question....is disheartening. Please do your research, homework before which group you decide to join.