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Newsgroups and mailing lists that provide support and information for people with particular disabilities or illnesses are one of the great blessings of the internet. They are a way of finding out more about treatment, asking questions about symptoms, or just feeling a bit less alone. As most of the participants give their real email addresses, you can also write privately to people whose messages, or "posts", strike a particular chord. Many friendships have started this way. They are not necessarily international email-pal type friendships either - you may well find someone locally whom you would not otherwise have met.
What is a Newsgroup? + What is a Mailing List? + Which
Getting Started: Newsgroups + Getting Started: Mailing Lists
Now you're a "newbie"! - some tips
Newsgroups exist in a special part of the internet called Usenet. The name is misleading, because they are really discussion or special-interest groups. There are newsgroups for computer programmers, pet owners, Star Trek fans, scientists . . you name it, there is probably a newsgroup for it. You can find a newsgroup about a topic that interests you, and join in the discussion.
Mailing lists serve the same purpose as newsgroups, but they are conducted by email. Instead of just joining in, you have to subscribe by sending a specially worded message to a robot computer called a List Server (a computer server that runs the mailing list). Mailing lists are therefore more private. They are also moderated and people can be refused membership, or banished, if they break the rules.
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Many people like the privacy of a mailing list. They know that only other subscribed members are reading their posts, and they also know that the discussion is not going to be interrupted by nuisance posts from people advertising miracle cures and get rich quick schemes, by chain letters, or "flames" from malicious people who just want to annoy. (These kind of posts are the bane of Usenet newsgroups.)
Usenet newsgroups aren't private at all. Not only can just about anyone read what you've written, they can read it long after you've written it, because newsgroup posts arearchived and searchable on Deja News - with your name and email address.
People who participate in newsgroups usually get junk email. Unscrupulous marketing firms have special software to collect email addresses from newsgroup posts. These are then sold to unscrupulous advertisers, who believe that bulk mailing news of their product to thousands of people who aren't interested, is a cheap way of finding a few customers.
So as far as privacy goes, mailing lists win hands down. However, mailing lists have one big disadvantage: the volume of messages on a busy mailing list can be quite overwhelming. Every time you log on to check your mail, you get seemingly hundreds of emails, and unless you have a fairly sophisticated mail program that can sort your mail automatically, emails from your friends can get lost among them if you're not careful.
With a newsgroup, you get the message headers first, and you can look at them and choose which ones to download and read (with some newsreaders you can even choose to ignore certain "threads" or discussions completely); on a mailing list you have no choice, the posts just arrive in your inbox - in full - every time you check for new mail.
Most mailing lists do have ways to help their subscribers with the problem of volume; most, for example, give you the choice of getting a Digest version, which is basically one or two long posts a day containing all the posts stuck together one after the other. And lists that have topic headers will allow you to subscribe to some and not others, cutting down on the number of emails you receive. Still, it can be expensive to get a lot of messages, and people who are only allowed a certain amount of email on their account can find themselves in difficulty.
One of the benefits of belonging to a mailing list is that because your posts are sent and arrive by email, they arrive more quickly. Usenet news postings travel around the internet in batches, take roundabout routes and are low priority, so they can take varying times to arrive at your news server. That's the reason the posts you get from your news server are sometimes several days out of date, or you see the response before the original post. Remember that the post and the reply usually get sent from different places, which adds to the uncertainty of which will arrive first.
In the end, your decision about whether to belong to a newsgroup or a mailing list will probably depend on what's available. It is only with mailing lists that are gatewayed to newsgroups (eg CFS-L) that you have the opportunity to make a decision about how to participate. (As of October 1997 the Fibrom-L mailing list is no longer gatewayed to Usenet.)
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Here are some instructions that may help you once you have chosen a newsgroup or mailing list from those available for people with Fibromyalgia and Chronic Fatigue Syndrome/CFIDS/ME.
You need a newsreader application. You may already have one of these on your hard disk as part of your internet software. Newer versions of Netscape have a built-in newsreader (choose Window\Netscape News), but you may prefer a dedicated newsreader with more features.
You can download software, using your browser, from all sorts of places on the World Wide Web. If you have Windows 3.x be sure and download the 16 bit version not the 32 bit version (and vice versa if you have Windows 95). Good software sites areStroud's or "The Ultimate Collection of Winsock Software" TUCOWS. Forte's "FreeAgent" is a very good Windows newsreader, and as its name suggests, it is free! It is available from Forte's own web site, If you live outside the United States, it is advisable to look for it at a software site nearer to you that may be faster. This could be one of the sites mentioned above, your own service provider, your PC User's Group, or a university. You can, of course, also download software by FTP (file transfer protocol) using your FTP "client", but I'll assume that if you want to do this, you already know how, and where to go to do it.
The software you download generally comes as a self-extracting zip file; to install it, you unzip it in a temp directory and then click on setup.exe or install.exe. With most modern software, this initiates a fairly automatic installation and setup process, all you have to do is answer a few questions when prompted, for example about where on your hard drive you want the new program to go.
Once you've installed your newsreader, you have to configure it. First you have to tell it where to get the newsgroups from. This will typically be your service provider's "newshost". You will also have to fill in some details about yourself - your email address, your name, your organisation (as a private user, you can leave this blank). This process is similar to what you went through with your email program. When you have done this, you are ready to begin. There are also various options to choose about how you want the application to display newsgroups and posts, but you really don't need to bother with those until you have become more familiar with how the application works. The default values should be OK for now.
Next, ask your newsreader to list or show all available newsgroups (it is likely to be a HUGE list) so you can find the one(s) you are interested in. Then "subscribe" to it or them, which merely means highlighting, marking or whatever your application wants you to do (in Netscape News it's a little yellow tick in a box beside the newsgroup's name). When I first started trying to work out what newsgroups were about, I was afraid to do this as it seemed to imply some sort of notification or commitment from me to the newsgroup. Not at all! only your newsreading software knows you are subscribed, and you can unsubscribe any time you want. The reason for subscribing is that you can then tell your newsreader to "show only subscribed newsgroups", all the others will miraculously disappear, and you will never have to look at that big long list again, until you want to choose a new newsgroup. (Note though, that subscribing to a mailing list is different - you do have to register with the list by email.)
A quicker way than scrolling through the whole list to find the newsgroup you want, if you know its name, is simply to tell your newsreader to select it (in Netscape do this by choosing File/Add newsgroup). Don't forget to subscribe to it though, or next time you open your newsreader the newsgroup won't be there, and you will have to go through the process of finding it all over again. Also, all the posts will be likely to be marked unread, whether you have read them or not.
When you read a newsgroup, there is no central place or particular location to go to - not like a web page with its own address. You are reading the articles off a server, probably your service provider's. Because there are a zillion newsgroups, your particular service provider may not get them all. If they don't seem to have one you want, you can always ask if it's possible to get it.
Each time you open your newsreader, you ask the server to send you the available "headers" (that's the titles, with author, date and time) of the "posts" (messages, articles). You need only retrieve the "body" (text) of the message if you think it looks interesting and you want to read it. Some newsreaders will let you browse the headers while you are offline, mark the interesting-looking messages, quickly go online to retrieve the bodies, the go offline again to read them, saving you time and money. (This is possible because when you retrieve article headers and bodies they are copied from the newshost onto your own computer's hard drive.) New article headers may appear automatically when you open your newsreader, or you may have to ask the server to send them ("get more messages").
Your service provider decides how long the articles stay available on the server. Their hard disk would soon get full to overflowing unless older articles were deleted. This could be after a few days or weeks depending on their policy. That's why, when you try to retrieve the body of an article, you sometimes get "this article is no longer available".
When you first open your newsreading application, you will probably find it has already subscribed to some newsgroups for you - eg news.announce.newusers, news.newusers.questions, and news.answers. There is a good reason for this. These newsgroups contain are general information about Usenet and articles that new users should read to find out what they are doing. See Learning about Newsgroups, Etiquette and Mailing lists for an explanation of what you should be looking at here.
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To subscribe to a mailing list, you have to know the address of the mailing list's Listserv, and the proper form of words, or "command", for joining the list. These have to be exactly right or the Listserv (the robot computer server that runs the mailing list) won't understand your message.
If you do get it right, you get a message confirming your email, and then you get one or more documents describing the purpose and rules of the list, the address for sending messages to (different from the Listserv address), the topic headers you should use, and the commands for signing off, temporarily stopping the mail (for when you are away from home for more than a day or two) etc, plus other information like the names and email addresses of the list's moderator(s).
You should keep all these documents, as you will inevitably need to refer back to them later. It is very frustrating if you want to sign off a mailing list and you can't find the instructions! Sending an email to the Listserv saying "please take me off the list" will have no effect, neither will sending a similar message to the list itself.
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Here are a few tips to help you when you first join a newsgroup or subscribe to a mailing list. I find that people in groups for people with CFS or FM are welcoming and generous towards new members. But there are some things you can to help yourself learn the ropes. Some of these tips may sound a bit schoolmarmish, and on groups like Fibrom-L and CFS-L everyone appreciates that you are sick and brainfogged as well as new to this newsgroup stuff. But then so is everyone else sick and if you can observe them it makes life a bit easier for everyone.
Don't jump in both feet first. Read the messages for a while and get a feel for the group before you start posting. Note which posts are easier to read and seem well-composed, and why. And in the meantime:
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PLEASE NOTE: The original concept, content and design of this page from Moira A. Smith's Canberra FM/CFS Page: http://www.spirit.net.au/~masmith/ and has been moved to its new home here with the kind permission of the author: Moira A Smith (firstname.lastname@example.org) - Canberra, Australia
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