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Improving our endometriosis forumFrom: Roberta (anonymous@obgyn.net)Wed Jun 24 23:14:43 2009
Hi Everyone, For those of you who have been around a long time you know me. For the benefit of new members I'll introduce myself. I'm Roberta Speyer and with my husband Bruce we founded OBGYN.net in 1996 and EndoZONE.org in 1997. I do not have endometriosis. I am beginning to think my oldest daughter might. I have had, many years ago in my teens and twenties, debilitating panic attacks, so I know what it is like to have something horrible that no one understands or seems to be able to treat. To suffer and hide something because of my own ignorance of the existence of a disorder and the medical communities utter lack of understanding. Then they invented Xanax. It saved my life. But it wasn't until a pharmaceutical company came up with an effective drug for treating panic and agoraphobia that I even knew it existed. I remember the day I saw it on Sally Jesse Raphael. WOW! There were a whole bunch of us out there. I was not alone. And I had wasted 15 years of my young life thinking I was crazy! That is when I realized, "That which does not kill us...MAKES US MAD!" Why had no one ever told me about this before? It is easily treated with a little medication and a lot of behavior modification. But I guess there was no interest until there was money in it. But I digress...Back to OBGYN.net: In the beginning it was with a group of doctors and was only for medical professionals. Pretty soon we started getting a lot of women coming and the doctors said, "Let's encourage them to help educate patients and women to get better care.". So we got into the consumer healthcare business quite by accident. To this day we are still a very small company that we run from home in Texas, with a few long time contractors and a lot of volunteers. What we mostly do to make money is medical education projects for surgical and diagnostic companies, to educate doctors about new procedures. We also run Google advertising. Here are links to some of our latest projects if you guys are interested: http://vaginitis.obgyn.net/ http://www.obgyn.net/gyrusacmi/hysteroscopy/pasic/ http://www.obgyn.net/SpeculumEducation/ http://www.obgyn.net/pretermbirth/ffn/ Sorry for being boring (Bruce will probably pull my post). I just wanted to let everyone know who I am. The "boss = chief cook and bottle washer" of this tiny company, and hubby Bruce does the tech stuff. He is the one that comes in and spends hours ripping out threads when they get ugly and hurtful. Lately there has been some real mean stuff happening on this Endo Forum and it is a real worry to a lot of people. I have been getting emails from members I know about it. Bruce has been getting admin complaints to remove literally dozens of threads. We just got back from our son's wedding in Minneapolis. Waiting for us was a registered letter from a doctor who has been spoken ill of on this Forum. It was not a mean letter, or a threat to sue us (which I was expecting as I opened it with trembling hands). It was just pointing out that this doctor devotes their life to treating this terrible disease, and doesn't want to be coming up in Google with bad things being said about them and their practice. Fair enough, I think. This doctor offered to help by answering questions if we could arrange it. Many others I have spoken to... all specialists on endometriosis...all very caring and involved individuals are willing to help too by answering questions for women with endo. For all of you, on endometriosisZONE.org and OBGYN.net, for free. I think that would be so cool!!! But frankly, none will step foot on this forum because they are afraid in its current unmoderated state, they might not find it an experience that makes them feel like they are helping anyone. It might actually hurt themselves, their patients, their ability to support their families, give good advice in a caring supportive environment, etc. Who can blame them? So it is up to us to change that. Because getting free advice from experts would be so helpful to so many people who do not have access in their lives to endometriosis experts around the corner. I have given this a lot of thought. It has been very much on my mind. It is hard to do everything we want to do with limited resources. We do not make a lot of money, so we don't have a lot of options. But we do care about keeping this forum going. So here is what I propose: 1. We need some volunteer moderators. Not one, but a group of seven (to be tie breakers) who have been active on the forum for at least a year. If you are kind hearted enough and care about this forum's survival email me personally at roberta@obgyn.net and tell me why you are willing to do it. Send me some links to some posts you have done in the past that have been helpful to others. Messages will go by moderators before they get online. If they are augmentative they will be rejected before they ever appear. First moderator to approve and it flies. With seven this should not slow things down much. 2. No more anonymous posting. We did that back in the day, because we used to make everyone use their real name, then people complained when they found their personal life coming up in Google. But we need to make everyone pick at least a screen name in order to post. 3. Zero tolerance for breaking the rules about being kind and nice, and not putting other posters or doctors down. Do it once and the moderators, not me or Bruce, will block the person's posting privileges. If there is a question about it they will vote among themselves. Four to 3 and the person gets blocked. It will be out of my or Bruce’s hands. Poor Bruce, sometimes I have to smile, because he really spends more time on this forum some days than on the stuff he gets paid to do. He is a 52 year old computer geek guy, and running the endometriosis forum…you’ve got to admit that is funny! 4. We set up a forum for women to ask doctors and nutritionists, and lay-experts, and insurance coding experts’ questions. This forum is for day to day friendship, advice and support. The new “Ask the Endometriosis Expert Forum” is to ask a question from a professional and get an answer. Not a continuous dialog. People can participate in both this and the new forum or just one as meets their needs. But won’t it be way cool to have both? If you would like to volunteer to be a moderator and believe you have the time and temperament for it, we all would all be eternally grateful. As I said before, email me off line directly at roberta@obgyn.net. You could do it for awhile to try it out or longer if you decide you like it. Let me know if you are just interested in this forum or also in the new Ask the Endometriosis Expert Forum too. I realize that being in pain is sometimes makes it very hard to be patient or pleasant. I blew an ulcer last year and I was a total jerk, and the pain meds made me a crazy lady to boot. But really...we need to whip this endometriosis forum back into shape. It is one of the oldest and longest running, and has helped tens of thousands of people. I don't want it snuffed out by a few mean spirited people. Then everyone can run off to some new forum on some big corporate venture capital funded website, and abandon all the good work we do here. If I was paranoid (and of course like any good woman I am) I would almost wonder if some of this mudslinging was caused on purpose so people could recommend other forums. Well not on my watch! Most everyone here is wonderful, and helping a lot of people all over the world. We are going to sort this speed bump out and make the Endometriosis Forum even better than ever. I'm really excited about the addition of the Ask the Endometriosis Expert Forum!!! No other website besides ours has access to so many experts in the field of endometriosis from all over the world to draw from. We can do something world changing for the disease if we all pull together. It takes some time to implement these things because we have to do it around all our day jobs. But we can do it together. I have made plans to improve this forum in the past but always have gotten sidetracked by other things. Well #5 of the five Speyer kids is off at Rutgers. So I have more time on my hands (they are all only 10 years apart) and this is my mission for this summer. GET US SOME EXPERTS AND HELP WITH THIS DISEASE!!! Thank you for reading this far. I hope this helps everyone know where we are coming from and I hope you all approve. Best to you all, Roberta
-- Roberta F. Speyer President and CEO MediSpecialty.com Home of OBGYN.net The Universe of Women's Health http://www.obgyn.net
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