NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Welcome Expired refugees
- This topic has 8 replies, 3 voices, and was last updated 11 years, 5 months ago by
MattiesMom.
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April 27, 2012 at 9:19 pm #169
PalominoMorgan
ParticipantWell, I am guessing I wasn’t the only person to have enough of the Inspired BS. So, welcome refugees. Feel free to discuss most anything here. The moderator is (ahem) is very accommodating.
April 28, 2012 at 1:23 pm #2069Beth
ParticipantI have pointed a few people this way in the fallout of that mess. I am not the only one who will be missing you and Dr. D on Inspire. I am pretty sure my snarky attitude was responsible for getting yet another thread closed down after you left – and I was even being restrained at the time! I would be banned for sure if I said what I really thought!
I will be staying on Inspire, unless I get myself banned. And I will continue speaking about Dr. D’s work – if it annoys anyone there, so be it. This is too important to be silenced, although I understand why you both left.
I am glad I can talk about it here without being censored.;-)
Beth
April 28, 2012 at 8:23 pm #2071PalominoMorgan
ParticipantI have no idea what their problem is, but they really don’t want to look in the mirror. It’s a shame too that they come down hard on those who do try to promote awareness and direct people to their website. If it wasn’t for the other bendies and amazing drs (though I wish Dr. D wasnt shunned) I would boycott conference. Instead I think I will go and do my own idea for connecting people since EDNF seems to disorganized to get anything done. I can tell you though it will be hard to listen to them beg for volunteers again after they did jack squat with people who offered to help last year.
I also need to get off my arse and get my thirst designs out there. I have some REALLY good ones. Proceeds to go to MY service dog’s training and awareness projects that I have ideas for.
I have also considered coming back to Expire under a pseudonym. Not sure it’s worth the hassle though.
April 29, 2012 at 9:40 pm #2079MattiesMom
ParticipantI was kind of shocked by some things that seemed very harsh going on over there. I am new to all of this, trying to get information, and I was glad to have another forum that Dr. Diana was reaching out on. Now, I am sad with what I read on threads, and realize there are politics even in these small online communities. I was sad that Dr. Diana left. Her threads were the best. I haven’t removed myself from that forum, but I certainly prefer to hang out here where the info seems most relevant to me and my daughter. 🙂
April 29, 2012 at 9:45 pm #2080PalominoMorgan
ParticipantWell, I am wondering what politics you are referring to. I simply gave my opinion here. I’m sorry if you feels that is a “political” agenda. I have been around long enough to see the game that is being played and who is on what side. I don’t discuss that though because THAT would be a nightmare.
The point was to welcome folks here and to let you know we can have honest, frank discussions about things as we see fit. There is no big brother here. Big brother I’d Dr. D here. So, please feel free to share openly.
April 29, 2012 at 11:16 pm #2083MattiesMom
ParticipantI wasn’t referring to your opinion or politics here. I was talking about threads on Inspire, and I was in agreement with you. I was sad to see people treating Dr. D harshly (on Inspire). I was referring to their politics (on Inspire), trying to hush her from spreading awareness. I saw several threads (a mast cell thread), the thread you started to get Dr. D to speak at the EDNF conference, etc. I was shocked that people were accusing anyone of trying to “steal” people to her forum, etc. I was shocked that people were saying that she shouldn’t speak at the conference or discounted her theory because she is an optometrist etc. I was saying I was sad to read things like that because I admire her and her research. I followed those entire threads, and I did feel it became political. (On Inspire)
Wow, I think you took what I said wrong. Maybe you should re-read my post.
I was not talking about this forum. I said I prefer to hang out here, as opposed to Inspire.
April 30, 2012 at 12:30 am #2084MattiesMom
Participant@PalominoMorgan, When I originally chimed in, it was because I was trying to accept your “welcome”. Now I am afraid to speak here on the this (pretty ill) forum because I fear you or someone else may interpret what I say the completely wrong way. That really bums me out. :/
April 30, 2012 at 11:19 am #2087PalominoMorgan
ParticipantNope, MM. Feel free. The mistake was all mine. I read “over there” as “over here”. Stupid cognitive issues. SO SORRY! I knew my brain was off, but that was bad. I did re read your post several times, but it didn’t sink in.
April 30, 2012 at 4:30 pm #2091MattiesMom
ParticipantThanks Palomino, Makes me feel much better. I have major cognitive issues myself, and sometimes can’t get out what I want to say in the right words, so I truly thought I need to just not type on forums because I don’t get my point across correctly. I am glad we are good now. 🙂
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