A Guide to the Psoriasis Support Group

Welcome to the news:alt.support.skin-diseases.psoriasis newsgroup. Please also visit the http://pinch.com/skin site. This guide was compiled from experiences in the psoriasis support group. Even so, most of the info applies to the other alt.support groups. These tips and pointers are offered by members of the group to help folks find the support they are looking for, while avoiding the pitfalls that have trapped even the most experienced among us. They explain some of the customs and taboos that have evolved on Usenet, plus a few lessons we have learned. Please read this carefully through to the end at least once before posting. For the benefit of others, please point them to the original document at http://pinch.com/skin/guide.html or send them a copy by email. There are many helpful links that will work within a web browser, but it is also designed to be readable when printed. Read the 1995 charter for the group to understand why it was founded: http://pinch.com/skin/docs/newsgroup/ This guide is not a Frequently Asked Question (FAQ) file. Please see the Psoriasis FAQ and Newsgroup Resources at: http://www.psoriasisFAQ.com Psoriasis is a non-contagious, inherited, autoimmune disease that can appear in many forms. It is most commonly seen as thick silvery flakes especially around the elbows and knees. Sometimes it shows up as a raindrop spattering of lesions, or invades the scalp. In severe cases, it can cause complete disability, form painful pustules on the palms and soles, cover the entire body, or like arthritis, attack the joints. While no cure has been found, there are many treatment options available. (Some of them even help.) Visit the National Psoriasis Foundation website at http://psoriasis.org for descriptions of the disease, traditional treatments, research, kid's pages, local support groups, and much more free info. Become a member for a donation of any amount to receive their newsletter and educational brochures. getinfo@npfusa.org Archives Because postings expire in just a few days on most systems, the messages are archived via the web. The non-commercial group archive at http://pinch.com/skin/ provides tools that make it easy to search the full text of previous messages. Many other useful resources at the pinch/skin site can be used for finding answers outside of the group. The huge Usenet archive at http://groups.google.com (formerly Deja) can be easily searched from the pinch/skin page. http://pinch.com/skin/newsfeed.html has more info on reading and posting to the newsgroup. It is a good idea to search the archives before asking what might be a Frequently Asked Question (FAQ) in the group. You will get instant answers and avoid the frustration of having your question ignored. The range of topics that have been discussed since 1995 is truly boggling to the new arrival. There are over 70,000 messages in the pinch.com archive. Compare that to maybe one or two welcoming responses to most FAQs. You might be surprised at what you will find. Filtering out uninteresting results is easy to do with a search engine. Start with a broad search by entering one specific term you are interested in. Narrow down the search by adding more words. If you don't have access to a web browser, you are truly missing out on a wealth of information. If you're using one right now, there's a search form at the bottom of this page. No promotion allowed! If someone is offering a diagnosis or a treatment, be very careful. There have been many faked product testimonials and other scams. Even assuming the author is genuinely offering help, it is well known that what works for one person can be useless for another. Someone's convincing advice might be very accurate for a milder or more severe form of the disease than you have experienced. They might have a very high tolerance for the side effects of a particular treatment. Any new treatment should be well researched, and the risks and benefits should be discussed with your dermatologist before taking any chances. Asking for tips on getting an accurate diagnosis is quite safe. Describing new symptoms and asking for a general diagnosis is not a good idea. Even a qualified dermatologist can only make an accurate diagnosis by direct examination, not over the net. It is presumed that this has already been done when discussing treatments. If you recommend a treatment, be careful that a misinterpretation of what you suggest won't put anyone at risk. Don't try to be too convincing. You may be doing more harm than good if someone follows your advice rather than seeking professional help. Cite generic ingredients rather than brand names whenever possible. Beware of pushing a particular brand, or you might be seen as a shill. If there are any known risks, be sure to mention those too. While it is tempting to seek support by telling the world that you have finally convinced yourself to try the latest treatment, it would be more helpful to others if you could describe your results. If you aren't sure whether something is safe, by all means ask. Don't feel like you need to offer a solution just to say hello. Nearly all treatments for psoriasis have side effects of some sort, they should be listed along with the ingredients. Beware of any treatment where this information is unavailable. Many potent drugs and poisons come from "natural" sources. Most drugs are marketed in the US only with FDA approval, but the majority of OTC (over the counter) drugs are not closely scrutinized. Only when the FDA receives serious complaints do they take action, and often rather slowly. If you run across an abusive or inappropriate post, please refrain from responding. Usually the author isn't listening, or is trolling to see who will take the bait. In extreme cases, a complaint to their service provider (ISP) may be in order. Many have an Acceptable Use Policy (AUP) that specifically prohibits SPAM and disruptive acts, with fines and account termination as penalties for abuse. Many ISP's also filter the newsfeed, and a biting reprimand can end up being cross-posted to many groups while the original message was silently cancelled. http://spam.abuse.net details why SPAM is a real problem on Usenet. It is especially inappropriate to be promoting any products in a support group. Don't even think about doing it. It's a sure-fire way to lose all credibility and get a mailbox full of complaints. You might even lose your account for violating your provider's AUP. The only reasonable way is to join in the discussions and leave a pointer to a web site in your signature. Even this requires some tact, and due to past excesses, a simple signature is often seen as a red flag if it is health related. Imagine that you are handing out your personal card as you finish a conversation at a dinner party, rather than arriving with flashing lights, bullhorn blaring, and leaflets flying. Leave all of that on the web sites. Business propositions of any kind are seen as inappropriate. Those who participate only to promote a product can expect only scorn. Here are a few more netiquette tips that will have you posting like a pro: http://pinch.com/skin/docs/usenet-primer.txt http://pinch.com/skin/docs/emily-postnews.txt Please don't cross-post to the old alt.support.psoriasis group. It was removed from most servers shortly after it was created and now collects mostly spam. If you discover a site that lists it as active, links to it, or you find a sincere post in the old group, please tell that author about this guide. Quoting Minimizing "bandwidth" has come to mean being considerate of not only the space required for your message, but the time required for other people to read it. Please spend an extra moment of your time composing, so you aren't wasting thousands of seconds of everyone else's time trying to decipher your message. Please keep all the "fluff" to a minimum. Don't post any attachments, HTML, MIME, VCARDs, etc. Many new browsers unfortunately have options set to post styled text by default. This might be fine for emailing coworkers, but it just soaks up bandwidth on Usenet. Please go into your browser options and make sure that HTML and VCARD options are turned OFF. Many newsreaders don't handle HTML or even automatically wrap long lines on the screen, leaving an unreadable mess. The convention is to set the line length shorter than 74 characters wide, to leave room in case someone quotes your message in response. AOL'ers, please set your options to use "Internet quoting" style. Check the archive to see how your post looks. If you want to share a page that you found on the web, please post the URL with the full http:// prefix rather than pasting in the entire content. Often the formatting is lost and extra characters get inserted making it difficult to read. Nearly everyone has a browser and it is often only a click away. There's an art to quoting. Trim off any lines that distract from what you are responding to. If that isn't practical, then just summarize the context so everyone will know what you are referring to. The original message often arrives at some sites long after the responses so be sure to reference the author of the quote. When summarizing, be careful not to rephrase someone's words into a different meaning. They might feel it necessary to rectify the error. >> Many newsreader programs use the special characters at the beginning of >> a line to show quoted text in color or italics. Multiple characters >> mean that previous quotes are being quoted. > > Leave an extra line or two after the quote or your message might be lost > in the quote. This can be a real puzzle when someone apparently posts a > quote without comment. Accidents happen, but often the response is found buried in the last line, or even in the middle of quoted text. Please don't put the quotation at the end of your message. This is the mark of a newbie, and it's a sure sign that you're quoting too much. It gets hard to decipher when more than one person does it. If you usually post this way but then add something after a quote, it might get missed because people will be in the habit of skipping to the next message as soon as they see your quote. There is an epidemic of bottom-posting or 'tail-quoting' caused by the default settings of MS Outlook and Netscape. They quote the entire message and leave the cursor at the top. The assumption is that this makes it easier for the user to trim quotes. The problem is that new arrivals dont bother to trim, and they see everyone else doing the same, so they think that's the accepted style. This is frustrating to folks who have participated in the group for years, and try to keep up with all the messages. Putting a concise context quote at the top is a show of consideration for those who try to read every messages. There are only rare occasions when a full quote is required. Quoting someone else's signature or blank lines at the end of a message is another sure sign that there's trimming to be done. Please don't quote an entire message just because you agree with it and think it bears repeating. This irritating practice is called a "mee too" response. Sometimes the subject heading of a thread has little to do with what is actually being discussed. It's a good idea to at least check all of the threads before posting. If you are following up someone else's message, please don't change the subject line or start a new thread unless the topic has drifted too far from the original subject. It might be impossible for some to read all of the messages, but many of us try. It is frustrating to see the same questions in multiple threads. If you want people to read your new topic, give it a precise subject heading that will make sense in a reply. Don't put anyone's name in the subject line. Starting a topic with "A question for so and so" should be sent by email, rather than an open forum where everyone is welcome to respond. Email It is polite use a valid email address. Many people only reply privately and won't notice an antispam address until it bounces. If you do forge a fake return address, make sure that it doesn't direct mail to an innocent site. Be aware that this convenient tactic penalizes the people within the group who might contact you, rather than actually protesting against spam. Try using one of the many free email addresses for posting to Usenet, and your regular service only for private communication. A name of some sort is much more personable than a string of numbers. It's best to put it in the headers too, if possible. If you want to maintain your privacy, choose a pseudonym (Mark Twain did.) Please don't post from multiple accounts, especially to answer your own posts. When you follow up to a public message, don't email a copy to the original author unless you make it clear you have done so. Most people check email and respond to private messages first. When the person later finds out that the message was also publicly posted, don't be surprised to find that the public response is not as sympathetic the second time around. If someone sends you a private message, it is a breach of confidence to announce it or post a public response. An exception to this might be an informative response from a company and manufacturer that clarifies an issue for the group. Even so, it isn't likely to inspire trust. Interaction Give a message time to propagate. Don't repost becasue you can't immediately see your own message. Many servers are connected to the backbone of the net and messages can sometimes take days to arrive if a server goes down or gets blocked for some reason. For those who crave interactivity and immediate response, there are chat boards, IRC, email, and live conferencing tools. Those channels may provide instant gratification, but they never have the quality of content that is possible when someone takes the time to consider a question and provide a well reasoned response. It shouldn't need to be stated, but support groups are not the right place for insults, racism, name calling, character attacks, product promotion, tantrums, tasteless jokes, spelling lessons, fantasies, fetishes, test messages, international politics, editorials on current events, ranting, sarcasm, reposted jokes, investment tips, theological manifestos, etc., ad nauseum. There are plenty of Usenet newsgroups that specialize in each of those areas. Tolerance is important for building any community. Please leave controversial and off-topic subjects outside the group. This isn't a joke group. In this group we specialize in support. If we want this disease to be taken seriously, then we need to have an open forum where serious topics can be discussed. That does not mean that we can't joke around and be lighthearted as we help our fellow flakers. Keep in mind that what might be outrageously funny to one person may be seen as a cruel attack when delivered publicly without all the subtle visual clues. Adding a smiley face to a harmless insult may not erase the resentment for everyone who sees it. Laughter may be the best medicine, but annoying ridicule does nothing to develop a positive mental attitude. If you get upset because someone has attacked you, take a break from your computer. If you're still angry, sleep on it. If you STILL need to clear the air, try to find a constructive solution to the problem. Resist the temptation to have the last word or respond with more insults. It's better just to let some things slide. Let them think they have prevailed. Others will know better. If you MUST continue the dialog, please spare the rest of the group and do it by private email. It can take a long time to gain back the respect lost by publicly defending yourself with a few insults. Even a polite debate between two people should be sorted out privately. If you take issue with what someone has said, don't respond by attacking them as a person. Stick to the issues. Calling someone names only reflects badly on the person who is attacking and opens the door for more insults. Stereotyping anyone or attacking their entire culture is guaranteed to generate a lot of hostility. No matter how offensive your attacker, limit your defense to the flaws in their behavior or their ideas, not their soul. This can't be emphasized enough as it is the fuel that feeds the endless flame wars. Many members of the group have learned English as a second language. While some have become fluent Anglophiles, please allow for a wide variation in the language. Anyone seeking support is welcome and multilingual members generously provide translations whenever necessary. Regional discussions related to psoriasis are fine, but please be considerate of those on the other side of the globe. It's easy to forget that there is a large silent readership (fondly known as lurkers) that for a variety of very good reasons prefer to merely observe the discussions. There might be ten or twenty people reading for every author that posts to the group. It has been said that there is no such thing as a stupid question. Thoughtless responses are not so easily forgotten. They may be rediscovered indefinitely by people searching the archives. Don't hesitate to bring up anything you would like to discuss, but please try to keep on-topic and be compassionate of others. Chronic diseases often have profound emotional and psychological effects. We all get frustrated and depressed at times. This can range from mild to devastating for some people. It is not healthy to supress these negative emotions, but raging in public only insures that everyone gets a taste of it. The anger doesn't go away. Realizing that we are not alone can help us through these difficult times. We are more than just friendly info about the treatment of the day. If you're worried about not being able to manage your psoriasis, give us a chance to help. If you just need some cheering up, feel free to jump right in and let us know what's troubling you. You might get a belly laugh or a confirmation that someone else has gone through the same ordeal. There's a lot of experience here waiting to be shared. If you are up on what's going on in the group and want to provide a helpful pointer rather than reposting an old file, try using this shortcut script: http://pinch.com/skinny
Last changed [an error occurred while processing this directive] Thursday, 21-Aug-2003 03:15:41 EDT by Ed Anderson
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