- Topica (http://www.topica.com)
For mailing list topics.
I typed in "heart attack" and found a category called "Heart Disease." Clicking on that category, I found a sub-category listing 11 support groups.
- Yahoo! Groups (http://groups.yahoo.com)
for mailing list topics.
I typed in "heart attack" and found a category called "Heart Diseases." Clicking on that category, I found over 60 support groups listed.
- Google Search Engine (http://www.google.com)
I typed in "heart attack support group" and found a lot of articles on heart attacks, but only a few results mention support groups for survivors and the like.
- Psych Central Resources (http://psychcentral.com)
I typed in "heart attack support group" and found nothing of use (Psych Central focuses on mental health issues).
STARTING A NEW ONLINE SUPPORT GROUP
John M. Grohol, Psy.D.
September 22, 1997
Last updated: 2 Jan 2002
Unlike anything else in this world, the Internet offers people the ability to connect personally with one another through self-help support groups covering a wide variety of medical and mental health concerns. New groups which address concerns not currently covered by an existing online group are easily created. All it takes is a short amount of your time and the desire to create a gathering place for people with a specific disorder. This article pools together all the experience and knowledge about the Internet I've gained over the past few years, and organizes it so that you can create an online self-help support group with minimal effort.
Just three easy steps are needed to create a new self-help support group online.
1. Does a Resource Already Exist Online for Your Concern?
Just a note about language used throughout this article. When referring to a "concern" or topic," I'm speaking of topics such as "depression," "panic attacks," "cancer support," etc. These are very much _real disorders_ which cause very real pain in many people's lives.
Before venturing off into the great Internet wilderness and chopping down trees helter skelter to build your log house that will act as a refuge for all abuse survivors, you'd better make sure that: A) someone else doesn't already own the land; and, B) another house doesn't already exist for those same individuals. It's easy to overlook this step in one's haste to find or create new support groups online. Providing a simple way to determine if a support group already exists is precisely the reason I began compiling all the Pointers on my Web site (http://www.grohol.com/). The newsgroup and mailing list Pointers are simple indices of online support groups. These pointers have now been subsumed by the Psych Central Resource Directory.
The support groups that have been created on the Internet historically have tended toward the more rare conditions. Of course, some old newsgroups, such as alt.support.depression, are the exception to this. Mailing lists especially seem to be more oriented toward rare conditions than are newsgroups, because of the intention and philosophical differences between these two types of communication. I'll explain more about that distinction below.
If you've looked at my Pointer indices and didn't find any newsgroups or mailing lists devoted to your topic, it is a wise idea to look around just a little bit further to make sure nothing else already exists online which addresses this support topic. Doing your "homework" now will benefit your case and argument later if you choose to go the newsgroup route. It really makes little difference if you're creating a mailing list, except that you could be possibly duplicating the work and effort of someone else for little reason.
To ensure your proposed group doesn't already exist somewhere online, I recommend going on the Web and doing a little research on three specific Web sites. These sites are all "keyword" searchable. Therefore, don't waste any time exploring them. Go right to their respective search options and type in your keyword(s). For our example of survivors of people who suffered from a heart attack, these keywords may be things like:
heart attack support group
(Generally, you should stay away from using plurals when using a search engine.)
These are the four resources you should check:
It may also be helpful to check your local list of newsgroups (for instance, through your Web browser, if it supports such an option) to see if any newsgroup name stands out as being perhaps appropriate for your topic. I can't tell you how exactly to do this, because Web browsers and newsgroup software are all very different.
You can also check out any other search engine you may like on the Web (such as Yahoo or Lycos), just to be on the safe side, but it's not necessary. At this point, we looked around pretty thoroughly for this topic and couldn't find it anywhere. Now what?
2. Do I Want to Create a Mailing List, a Newsgroup or Something Else?
Mailing lists are discussions which are conducted entirely through one's e-mail box. Since most everyone who owns a computer also has e-mail capabilities, you can likely subscribe to an Internet mailing list with little trouble. Discussion takes place when people who are signed up for the list (or "subscribed" to it, like a magazine subscription, but at no charge) write to the "list." This "list" is nothing more than a particular e-mail address; the e-mail address points to a piece of software on a machine somewhere. This special software takes mail written to it and simply sends a copy of it out to everyone else also subscribed to the list. In this simple manner, a discussion can take place electronically. You write to the list, everyone else sees your message as a piece of e-mail in their e-mail box. Then, perhaps someone replies to it and sends their reply to the list too. The next day, you go to read your e-mail and ta-da! The reply is sitting there waiting in your e-mail box. People like mailing lists because they're very easy to use since all you need do is sit back and watch your e-mail box fill up with messages.
I believe that people also like mailing lists because they tend to cater more to smaller groups of people. A "small" group in this context may consist of between 30 and 500 people, and very rarely over 1,000 individuals. In contrast, the average readership of a newsgroup (explained in greater detail below) ranges anywhere from 15,000 to 100,000 individuals daily. While 300 people may seem like a lot for a support group, it's not nearly so bad when you take into account that all the people who subscribe to a particular mailing list don't write (or "post," as they say online) something to it every day. In fact, only 1 out of every 20-30 people on a mailing list post to it on any given day. Ten to fifteen messages per day can be expected from a 300-person mailing list.
Mailing lists are also more private than newsgroups. Whereas anything written on a newsgroup is out there for the whole world to read and reply to, mailing lists exist only in people's e-mail boxes. A person has to specifically go out of their way to find a mailing list, and then send a specific command to be able to subscribe to the list. This means a mailing list can be relatively more intimate and feel more private.
The disadvantage to setting up and running a mailing list is that it can be time-consuming and frustrating. The system you use to access the Internet (whether it's through a university, a local Internet service provider (ISP), America OnLine or Prodigy, a free-net, or some other service) must be able to support the creation of mailing lists with special software. If the system doesn't currently have that software, it is easily obtained. You will, however, have to convince the people who administer your Internet service that it would be beneficial for them to get it. Then you'll have to learn how to use it (it comes with instructions). Each piece of software is different, so again, I cannot offer many specifics here. Some examples of popular mailing list software are Majordomo, listserv and listproc. Mailing lists can be easy to set up and maintain, or they can be the hardest thing you've ever done online; much depends on the helpfulness of your system administrators and your own familiarity and comfort with computers.
Newsgroups, on the other hand, are relatively hassle-free once they've been created. Their creation, however, is their main drawback. Whereas it only takes a willing system administrator and the right software (usually already installed) for a mailing list to be created instantly today, newsgroups go through a strange, archaic process of creation which varies dramatically depending upon the type of newsgroup you'd like to create.
Newsgroups is the term for the Internet's public discussion forums or "bulletin boards," and they are collectively known as Usenet. When people speak of Usenet, they're talking about the newsgroups part of the Internet (just like there's also a Web part, a gopher part, an ftp part, etc.). Newsgroups are arranged into hierarchies. For instance, the newsgroup sci.psychology.misc resides in the meta-hierarchy of sci (for science), and the sub-hierarchy of psychology. The misc. stands for miscellaneous, or a catch-all group for any scientific topic related to psychology. There are two main types of newsgroups: Those that are in the "Big 8" hierarchy and those that are not (for instance, "alt" newsgroups). The Big 8 is a term to describe the original, basic seven hierarchies that evolved (recently an eighth was added) over the years: sci, news, misc, comp, rec, talk, soc, and humanities. Newsgroups that exist in one of these hierarchies are only created after a standard set of guidelines are followed, a vote is taken of anybody who cares to vote online, and the group passes or fails its vote. Since this is a whole culture unto itself, I cannot go into the details of how to do this (or, more interestingly, why it exists at all). If you're really brave and interested in this sort of thing, read the following newsgroups: news.groups and news.answers and anything else in the news.* hierarchy. There are many FAQs (Frequently Asked Question files) which exist online that answer any questions you may have about this process.
For this article, we're more concerned with are newsgroups outside of this Big 8 hierarchy, and specifically, those in the "alt" hierarchy. Alt was conceived as an alternative to the rigid creation guidelines of the Big 8, allowing people to virtually create new newsgroups at will. Of course, even this has its own culture and set of informal guidelines.
What are the differences to a newsgroup which resides in one of the "Big 8" hierarchies and one which exists in the "alt" hierarchy? The advantage to a Big 8 newsgroup is that once one of these newsgroups passes its vote, it is created virtually world-wide as a legitimate newsgroup which most people can easily access. The disadvantage to creating a Big 8 group is that it takes at least 2 to 3 months to go through the process, and it helps to know the process intimately (by reading news.groups and becoming familiar with the newsgroup creation guidelines) to ensure passage. The advantage to the "alt" hierarchy is that a newsgroup can usually be created within a week or two after being proposed, but its propagation throughout the world is more limited. This is because many sites don't carry every newly-created "alt" group anymore unless specifically requested by one of the their users, because there are so many new ones created every week.
Many sites, regardless of the worth of certain "alt" groups, reject the entire alt hierarchy outright because of some of the negative things found within it (e.g., the "alt.sex.*" sub-hierarchy). This means that some users may never be able to see or read your new newsgroup. It's a tricky decision to make, but most people go with the "alt" creation anyway because it's so much easier and quicker.
While newsgroups can also be moderated (where an individual is designated to screen all articles before they get sent to the newsgroup), this is again a complicated process which I cannot go into here. Moderation is a great idea for low volume newsgroups, but it doesn't make much sense in most support groups, since they tend to be of higher volume.
Unlike mailing lists, newsgroups are open to the whole world. While this is good in terms of reaching more people who might need the group's help, it's also bad because it attracts some rather unpleasant people from time to time. These individuals often think people need to "just get over it," whatever "it is. Others want to sell the readers of the group stuff. Others will offer a miracle cure. Others will suggest turning to a cult. Newsgroups attract all sorts of people, but they can usually be handled with some finesse. Some of these things also occur on mailing lists, so this reason alone shouldn't deter you from starting a new newsgroup.
There are additional forms of support online you should be familiar with, but which I won't discuss in detail here. Discussion groups that occur exclusively on Web sites that anyone may access are becoming more popular nowadays, but you need to have a Web site (or know someone who will start such a forum for you) to be able to take advantage of this. An interactive, real-time chat is also popular for some topics, but it usually takes some publicity and a fair amount of planning to achieve "critical mass" (e.g., enough people in the chat to make it feel worthwhile to the participants). These live chats usually come from a mailing list or newsgroup, not the other way around. HealthyPlace.com is a large Web site which hosts both Web-based discussion groups and Web-based chats.
3. Create It!
Mailing lists are simple to create because most systems already have the software necessary to run them. All you need to do then is contact someone in charge at your Internet service provider's company (a system administrator, customer service representative, etc.) and explain that you'd like to create a mailing list for other survivors of people who suffered from a heart attack.
They will assist you in setting up the mailing and will provide you with the necessary instructions to run it. If the service representative does not know how to help you, you can either: A) nicely harass the people in charge to get the mailing list software and install it on their system so you can set up this list; b) find a willing service provider online who can set up a mailing list for you. Two such free commercial services are:
After you've gotten it created, there's a mailing list devoted to disseminating only announcements of new mailing lists. You'll want to place an announcement on this mailing list to get the word out about your new group. Send an e-mail message to: [email protected]; the subject should read: Name of list - Short description. Include a fuller description of the list, its purpose, contact information, and subscription information in the body of your e-mail. Many system administrators already know about this list and will take care of posting your announcement to it. Don't forget to choose a name for your mailing list. It can be anything, but something simple yet descriptive is usually best. For our example, we may choose something like "Heart-Attack Survivors" and the subscription name might be shorter than that, such as simply "heartsurvivors." The full name of the list and the subscription name can be different, but the subscription name should be one word and easy to associate with your subject.
The following pertains only to the creation of "alt" newsgroups found in the "alt" hierarchy. It doesn't pertain to any other type of newsgroup or hierarchy.
First, make sure you can subscribe to the newsgroup called alt.config. This newsgroup is where discussion takes place about creating new "alt" newsgroups. You're not going to get very far if you can't read this newsgroup for at least a few days. Read the newsgroup for a few days and look for a FAQ (Frequently Asked Questions file) that has a title of "So You Want To Create an Alt Newsgroup" (also currently available on the Web at: http://www.cis.ohio-state.edu/~barr/alt-creation-guide.html). Read it carefully.
You need to choose a name for your proposed newsgroup. Read the "How to Name a Newsgroup" file (http://www.tezcat.com/~haz1/alt/naming.html) to find out how to pick an appropriate name for your new group. Our sample topic has been survivors of people who suffered from a heart attack. That's not all going to fit in a newsgroup name, especially when most newsgroup names are nothing fancier than "alt.support.depression" or "alt.support.cancer." The name should not contain any abbreviations or any part longer than 14 characters. The only really accepted punctuation used in a name is a dash. Periods should not be used to spell out a sentence or a term. So alt.support.survivors.of.people. who.suffered.from.a.heart.attack isn't a valid name (and will be laughed out of alt.config if you suggested it!). Neither is alt.support.survivors-of-people-who- suffered-from-a-heart-attack because that last part with all those dashes is definitely more than 14 characters.
Now, post your first message to alt.config describing your desire to create a new "alt" newsgroup:
Subject: Proposal: alt.support.survivors.illness
I would like to propose the creation of a new alt.support group for the discussion and support of family members and individuals who have suffered through any type of illness, such as heart attacks or strokes. I already looked extensively online for a support group which covers this topic and found nothing which was specifically designed to help survivors of general medical and mental health conditions. I think this group, then, would fulfill this need.
I'm not sure whether the name should be alt.support. survivors.illness or alt.support.illness.survivors. Suggestions and comments are appreciated.
I decided to go with a broader category in my final name, because one of the things I learned in alt.config is that broader general categories such as this one are more likely to gain broader general support from the readers of alt.config. In the body of your message, you should again state the name of the proposed group and a rationale for wanting it created. This can include "Because there's nothing else out there for people looking for support as survivors of loved ones who suffered from a heart attack." This is where your previous research really pays off big time, because nobody can contradict this argument. You may also wish to explain why this topic is not better suited for a mailing list. It's usually sufficient to say that you don't have mailing list resources available to you (if that's true), or some other similar reason. Encourage others to voice their support about the topic and/or the proposed group name.
Someone will usually reply to your article in the newsgroup within the next few days. One of these replies is usually from one of the alt.config "regulars" who helps guide the creation of new alt groups. These people change from year to year, as some get tired of doing it and others take their place. I try and read alt.config on a regular basis and reply to any alt.support.* or alt.psychology.* proposal. Usually such replies are going to be supportive, with suggestions for a slightly different name being the most common reply. Be flexible! Don't get so hooked on a newsgroup name that you let this nitpick sink your proposal. If you find another name you can go with in this discussion, repost your proposal after about a week with the new name specified.
Once discussion has ended (if it's not a particularly controversial newsgroup topic or name, which most support groups aren't), it will take another week or two before control messages, which actually create the newsgroup, are sent out. Again, regulars of alt.config, including myself, regularly do these as well without needing to be asked. It takes another few days for that control message which creates the newsgroup to reach your particular site, and even then, as discussed previously, your site may still not automatically create the new newsgroup. You may then have to send a polite e-mail to your Internet service provider's news administrator or customer service representative (again!?) and ask them to create this new newsgroup at your site. This communication may not be necessary, but if you haven't seen your new support group at your site a week or so after discussion has ended, then you might have to do it. This e-mail might look like:
I recently suggested that alt.support.survivor.illness be created on alt.config. After discussion had ended, it was agreed that this would be a beneficial group to create, and so some people created it two weeks ago. Unfortunately, I haven't seen it show up on our site here yet, so I was wondering if you could create it locally so that I may be able to access it and the support it offers to me and thousands of other people around the world.
Thank you very much.
Your support group has been created!
You can now also hopefully access it at your site to read messages and post to it. You should post an introductory message in it and if you wrote a charter for the newsgroup, post it now too. A charter -- which is not necessary for alt groups, but might be beneficial nonetheless -- is just a short description of what is and is not appropriate for posting to the newsgroup. Introduce yourself and invite others to post something in reply.
The wonders of self-help support groups online await you. These guidelines will hopefully make it a little bit easier for you to accomplish what seems at first to be very difficult, but in reality is relatively simple. There are no guarantees here, though, and your support group, whether a mailing list or a newsgroup, still may fail if nobody reads it or posts messages to it. It helps to advertise it around on other newsgroups and mailing lists, let other people know it exists, and encourage people to join in the discussion. Sometimes it just takes one person to make all the difference in the world. You can be that one. Good luck.
Last reviewed: By John M. Grohol, Psy.D. on 15 Apr 2015
Published on PsychCentral.com. All rights reserved.