| Alt.Support.Thyroid | |
by Mary J. Shomon Next page > Ready to Start? How To Do it! > Page 1, 2, 3, 4
Continued from Part 2
Mary Shomon: What do you feel are the downsides or weaknesses of Alt.support.thyroid?
Most of the members didn't really feel that A.S.T has any significant downsides.
Both Lucy and Lois would like to meet more of their fellow newsgroup members. Says Lucy, "It would be nice to perhaps have to opportunity to meet some of the people on the newsgroup."
For Lois, "I'd like to meet more people in alt.support.thyroid. Some of us have become friends, and I've met a few of
them, but I want to reach out and connect with more people in a more tangible way. An online group has its limitations."
Mag's main concern has been "a few experiences with very angry people who used the group to vent their frustrations. Fortunately, the measured answers to their rants have always led them to go elsewhere within a short period of time."
For John, "we can deal with spammers. The thing that bothers me most is the occasional person trying to be helpful and putting out bad or scary information. This is where I shine. I try to correct the error, if I can, and do so without insulting the person trying to be helpful."
According to Elaine, "We could use a good 'starter page.' Several of us have gotten together backchannel and put together a document that serves as our FAQ. We decided that we did not want a true FAQ. As you know, the page is our "Welcome and Reading for FAQ". It gets posted once a month by John Riggs and in between we'll e-mail it to people on request, or show them how to find it on deja.com It would be easier to
point to a URL. Thanks to you it looks like we'll be able to do that." The A.S.T "Welcome and Reading for FAQ" is online at the About site.
Mary Shomon: What suggestions would you make to people who are newly diagnosed with thyroid disease, or who suspect that they have thyroid problems, when they come to alt.support.thyroid for the first time?
Elaine suggests starting with the "Welcome and Reading for FAQ". She also recommends that new visitors "systematically get through thyroid.about.com, which is on the top of the resource list. And, when posting lab results to get opinions, always post the lab ranges."
Sara also recommends that the first step be to read a.s.t.'s FAQ, plus "as much other information as they can get their hands on. I usually recommend Mary Shomon's book, and Dr. Arem's book. I have also begun to recommend, especially to women, that they become informed about their overall hormonal picture by reading Dr. Elizabeth Vliet's new edition (Dec. 2000) of Screaming to be Heard. The endocrine system is so complex and I've found by hard experience that it is really best to begin treatment only after one's hormonal picture has been assessed. I also am now a firm believer that including a mind/body approach to one's health challenges is essential to true healing. This is a lot of information, but I wish someone had presented this to me 2 years ago when I began so that I didn't spend that time trying the shotgun approach to finding treatment. Taking all of this into account at the beginning would have saved me a lot of money, setbacks, and stress."
Lois too stresses that new visitors read the 'Welcome & Reading for FAQ,' and read some of the posts. "If you have questions, or just want to make contact, post to the group with a subject line indicating your specific concerns. Tell us about your symptoms, and if you have recent lab test results, include them in your post, along with the lab ranges. We'll provide our opinions (not medical advice), and perhaps make suggestions and list some relevant web sites and books. Sometimes the problem isn't the thyroid. We try to help identify what the problem probably is or isn't, and if it isn't the thyroid, chances are that someone in the group will know something about the condition and be able to discuss it with you."
Lucy advises that new users "post any questions they feel they need answers to, and also to suggest that they stick around and read some of the posts to learn a little about the disease."
Mag also suggests "don't assume every doctor knows or cares what is best for you."
And finally, from John, "Relax. Take a bit of time to read what others are saying. We are there to help. If you have a question, ask it. Someone will answer you, even if they don't have an answer for you ( but most will bring it to the attention of someone that does...usually Ted)."
Mary Shomon: Sometimes people are intimidated by newsgroups because they hear about flame wars, or off-topic spammers and such. How is this typically handled on alt.support.thyroid?
The a.s.t. newsgroup is not as subject to flame wars and spam as other newsgroups, thanks to the general spirit of the group, plus the efforts of its regulars.
Sara feels that the group is lucky in that they very rarely see much of this. "In comparison with any other list I've been on, we're a very congenial, helpful, and close bunch of folks. Once in a while someone comes in ready to battle and this usually is handled by one or more members rationally replying to them and finding a way to work things out. I can only think of a couple of memorable problems in the 2 years I've been around."
Says Lucy, "Luckily at A.S.T, we don't have many flame wars, we tend not to rise to the bait - you can usually tell a 'flame post' when it starts. I think flamers are handled in a quiet, confident manner - very often, nobody responds to the flame post, they get bored and move on. If the poster has a genuine reason for getting angry, they usually get a good response - but in a way which seems to dampen the flames - not fan them!"
When it comes to problems, John is frequently the one who steps in to help. "I try to ward it off or warn others of someone trolling for a flame war. Some people actually think that a flame war is good entertainment (sick puppies, the lot of them ). A lot of the time I can keep the individual from bothering others by diverting their attention to myself. If they become abusive we can always warn them off with a note on how to report abuse. That generally gets them to back it down a touch. Seldom has a flamer ever been successful at getting the group at each other. Usually the group attention is focused on the flamer and their bad manners."
Lois explains the philosophy further. "We have a core group of caring people who enjoy interacting with each other as well as talking to new people. Flamers don't fit in at all. If they try their tactics, we gently but firmly explain to them that this is unacceptable behaviour in our newsgroup, and we suggest how they can participate, steering them to the subject at hand. Having several regulars do this is usually effective. These people may be used to newsgroups where flaming is the norm, and when they see the tone of our group, they either change or slink away. We've never had one stay around for long. Our subjects are sometimes off-topic, but we usually mark these posts (jokes and other subjects) with 'OT' in the subject line so that those who want to read only on-topic posts don't have to read the other ones to find information. To me, the OT posts contribute to the connectivity of our group."
Elaine says she's always impressed with how the group handles spam, flamers, and trolls. "In some cases we've had angry people join in discussions with the potential for flame wars that were calmed down and who became active participants. I think a.s.t. is unique in how well this is handled. Usually one person points the flamer to our 'Welcome and Reading,' which has guidelines for etiquette. It is usually pointed out that we are a support group and flames will not be tolerated. We don't all jump on that person (that's a flame war in itself). A lot of time flamers have an underlying legitimate question or point, and this is addressed. The
poster often responds to this positively. A big problem with spam on other news groups is that a lot of people respond to it. We tend to ignore it and it goes away."
