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A Guide to the Fibrom-L Email Discussion Group


The Introduction and the Tips sections were written by Moira A. Smith. The information about how the list operates, topic headers, list server commands etc., has been adapted from the group's Welcome message and other official ADMIN posts written by the Fibrom-L list owner/managers.

We have made every effort to ensure that this information is correct and up to date. However, if anything in this page conflicts with official advice from the list owner/managers, you should assume that they are right. We hope that this page will be a useful reference for Fibrom-L mailing list members.

On this website we also have some general information about newsgroups and mailing lists for people with CFS/FM, and how to use them. Go to the Online discussion groups contents page to see what's available.


CONTENTS

Introduction to the FMily by Moira
A brief history of Fibrom-L
FIBROM-L Managers
How to subscribe

Welcome to Fibrom-L

1. Vital Importance Of TOPIC in the Subject Line

2. TOPICS

3. Key Commands

4. Our Expectations Of You

5. Penalties!

6. Asking The Doctors For Advice or Looking for a Doctor

7. Technical

8. Information papers (FAQ's) and how to get them

9. FMS-CHAT group

10. Acronyms

Other helpful stuff

Now you're a "newbie"! by Moira
Fibromyalgia acronyms and abbreviations


Introduction to the FMily

by Moira

I can't remember how it was I first came to meet the FMily (as discussion group members call themselves) but I do know it was during the first half of 1996 when I was going through a very difficult period of my life, trying to keep working in spite of being constantly tired and in pain, and getting more and more depressed. Reading about other people's experiences and hearing what they had to say about living with FMS was very helpful and comforting.

Almost immediately I learned that I was not alone in having memory lapses - something that had been worrying me a lot - but that it was in fact a common symptom of FMS and known as "brain-fog" or "fibro-fog". What a relief! This sort of relief at having symptoms validated or explained is a very common experience when people first discover the group.

Most of the people on the mailing list are PWFM (people with fibromyalgia). They have a wealth of experience, advice and support to share (with the odd argument as in any family), and for many of the participants the mailing list is an essential part of their lives.

The discussion group also has its resident experts, past and present notables include Dr Devin Starlanyl, co-author of Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual; Miryam "Mickey" Erlich Williamson, author of Fibromyalgia: A Comprehensive Approach ; Dr David Nye, a sleep medicine expert who treats PWFM in his practice; and various other health professionals who are often able to help by answering members' questions.

If you are new to the world of mailing lists, you will find the tips about posting conventions helpful.

HELP PAGE CONTENTS


A brief history of Fibrom-L

The Fibrom-L mailing list for fibromyalgia was begun during November of 1992 at the request of Molly Mack, Associate Professor in Division of English as an International Language and the Department of Linguistics at the University of Illinois at Urbana-Champaign. Molly had fibromyalgia (FM) for a number of years but - as is the case with many FM patients - she spent several frustrating years attempting to find a diagnosis that fit her symptoms (i.e., a correct diagnosis).

Individuals with fibromyalgia, their family members, health-care professionals, and any other interested persons are welcome to join this group. It is hoped that, through their interaction with the group, subscribers can better understand their symptoms, discover how others have coped with FM, and perhaps even avoid some of the frustrating "doctor-hopping" so common among FM sufferers searching for answers and help.

Fibrom-L is presently not funded by any source and is managed by volunteers who all suffer from fibromyalgia. The mailing list is presently located at MIT.

For a while, Fibrom-L was gatewayed to the Usenet newsgroup alt.med.fibromyalgia, but the gateway was disconnected at the beginning of October 1997. This was done due to the large number of spams, advertisements and other non-fibromyalgia postings originating in the news group, that had to be filtered out by the moderators; and also the fact that many mailing list members were finding themselves the target of email spanners who collect email addresses from Usenet newsgroups.

Fibrom-L is now a subscriber-only mailing list.

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FIBROM-L Administrator


List Owner/Administrator:
Mark London - MRL@PSFC.MIT.EDU

The Hosts at Fibrom-L:
Audrey Liebl, Barb Z., Chip Davis, Jane (Turnip), Linda S., Rita Shaw and Bill Hartwell

If you have questions or suggestions, they would be pleased to hear from you.

Send your request to: fibrom-l-request@mitvma.mit.edu

If you have a printer, please print these instructions and keep them by your computer for future use, either by you or someone assisting you.

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How to subscribe

To subscribe, send an email message to the Fibrom-L Listserv at LISTSERV@MITVMA.MIT.EDU with the following command: SUB FIBROM-L FIRSTNAME LASTNAME. For example, if John Doe were a new subscriber to the Fibromyalgia Discussion Group, he would type this one-line command: SUB FIBROM-L JOHN DOE.

Once you have subscribed to Fibrom-L, you become part of an online discussion group. All email messages sent to Fibrom-L will be copied to you, and you can send your messages or replies to the group's mailing address which is: FIBROM-L@MITVMA.MIT.EDU . (Note that the mailing address is different from the Listserv address that you use when you subscribe. The Listserv is a computer and it only understands commands about subscriptions. There is no point chatting to it. Equally there is no point sending list commands to Fibrom-L members via the mailing list address!)

When you join you will get a "Welcome" message giving you important instructions about participating in the mailing list. This web page contains the same instructions.

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1. VITAL IMPORTANCE OF THE SUBJECT LINE

All messages posted to FIBROM-L need a properly written subject line. If you are sending a new message, you must fill in the subject line. If a subject line is correctly written, people will be able to easily find messages which interest them by glancing at the subject line. Because of this, it is of vital importance to correctly create the subject line of a message.

The subject line should contain a topic followed by the subject of the message. As soon as you receive messages, you will see how people insert topics. You will also see that we do not always do it properly! Please become an example to us all when you start to write. The proper format is "TOPIC: subject". For example:

FMS: Water retention

Note the placing of the colon immediately after the TOPIC, and a space after the colon. This must be done this way. Otherwise, if a person is subscribed to receive only certain topics, they will not receive a message with an improperly specified topic.

If you feel it is essential to write under two topics (best to try to avoid that), then place a comma between the two topics, i.e.

FMS,VENT: Water retention

A message without a topic is considered as being a message with the topic OTHER.

When you create a reply to someone else's message, your reply message will automatically have the subject line of the original message. However, if the content of the messages has changed so that the subject line - is no longer appropriate, please modify the subject line so that it better describes the messages. You might also want to indicate what the original subject line was. For example:

SUP: How do you handle your children? (was MED: headaches)

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2. TOPICS

You can reduce mail volume by asking the server to send you messages which contain only certain subjects. The quality of this service will depend on how well you and others place TOPIC headings in the subject line when you write messages.

The mailing list software recognizes the following TOPICS:

(The topics DIS, SPIR, and SUP can be specified in full if you prefer, i.e. DISABILITY, SPIRITUAL, and SUPPORT.)

Any message without one of the above topics will be sent to the default OTHER, which you may deselect if you don't wish to receive the mixed bag of orphans and strays.

You can limit your subscription (and the amount of mail you receive) by removing particular topics. This is done by sending a message to LISTSERV@MITVMA.MIT.EDU . For example, if you send the following message: SET FIBROM-L TOPICS -HUM it would cause you to stop receiving messages which have the HUMor topic.

The same command can be used to add a topic by replacing the - with a +, i.e. to start receiving HUM messages, the command is: SET FIBROM-L TOPICS +HUM

More than one topic can be specified, for example:

Note: Please don't remove the ADMIN topic. Otherwise you won't get any advice and will at some time be in trouble.

New subscribers are set up to receive all topics except SPIR.

To see your current 'topics setting' you can send a message with the following text to LISTSERV@MITVMA.MIT.EDU

QUERY FIBROM-L.

Note: These instructions don't apply to Digest subscribers - they receive all messages regardless of topic.

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3. KEY COMMANDS

To post a message for distribution to other subscribers, send it to:

FIBROM-L@MITVMA.MIT.EDU


Use this address ONLY for sending messages to the mailing list. Do NOT use this address to change your subscription options.

Below are the commands for controlling your subscription. Whenever you read in this document "send this command to LISTSERV", it means to send the specified text as a message (with no subject) to:

LISTSERV@MITVMA.MIT.EDU


SUB FIBROM-L [first and last names] - Gets you on the list

SIGNOFF FIBROM-L - Gets you off the list

Quick addresses for subscribing and unsubscribing:
FIBROM-L-SUBSCRIBE-REQUEST@MITVMA.MIT.EDU
FIBROM-L-UNSUBSCRIBE-REQUEST@MITVMA.MIT.EDU
These commands use the address on the message to set the user name or delete them.

SET FIBROM-L NOMAIL - Stops FIBROM-L mail, but you stay on the list of subscribers, with the same topic settings.

SET FIBROM-L MAIL - reverses the last command and starts sending you mail again.

CHANGE FIBROM-L newaddress - Change  address by user FROM currently subscribed address.

You can reduce mail volume by asking LISTSERV to send you messages which contain only certain TOPICS. The facilitators have no control over messages with a missing or inappropriate TOPIC. The quality of this service will depend on how well you and others place TOPIC headings in the subject line when you write or reply to messages. For example, to remove a TOPIC from your subscription, send the following message:

SET FIBROM-L TOPICS -VENT

You would stop receiving messages which are under the VENT topic. The same command can be used to add a topic by replacing the - with a +, i.e., to start receiving VENT messages, the command is:

SET FIBROM-L TOPICS +VENT

To overwrite your existing TOPICS and start from scratch, leave out the - or +, and send a message to LISTSERV stating only those TOPICS you wish to receive, i.e.:

SET FIBROM-L TOPICS ADMIN, FMS, HUM, SUP

New subscribers are set up to receive all topics except SPIR.

Note: Don't remove ADMIN. Otherwise you won't get any messages from the facilitators and will at some point need them.

To see your current settings, send a message to LISTSERV. In the body of the message type:

QUERY FIBROM-L

If you are using a web browser to send your commands, you will be sent a message asking you to confirm your command. This is similar to the confirmation request when you subscribed to FIBROM-L. When replying to it, the text should be a single line which contains ONLY the message "ok".

After signing off or setting NOMAIL, it is possible that you will continue to receive messages for a short period of time. This is because messages sent prior to your command are waiting to be picked up.

FIBROM-L also can be received in DIGEST form. In this form, you will receive many messages condensed into one large message, rather than individual messages. Digests are mailed out whenever there are 1000 lines of messages to be sent out. The digest form is useful if you don't want lots of separate messages. However, you cannot limit topics if you receive the digest form. You will always receive all topics.

NOTE THAT THERE ARE CIRCUMSTANCES WHEN THE LISTSERV WILL AUTOMATICALLY SWITCH YOU TO DIGEST (see No. 7 below).

The following commands can be used to turn digest mode on and off:

Digest flavors -- plain, MIME, HTML

Command:

SET FIBROM-L DIGEST option - turns digest on.

Options: HTML, NOHTML, MIME, NOMIME

SET FIBROM-L MAIL - turns digest off and individual messages on

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4. OUR EXPECTATIONS OF YOU

We feel we are a 'FMily'. Please enter in that spirit. Treat each other with respect. Know that maybe a thousand people will read your words - seek their support, respect our mutual illness. Presume that a person whose words you may not understand may be at least as sick as you are. You cannot use the REVIEW command that in some discussion groups will give you a list of participants. Privacy comes first here.

People share remarkable confidences here. Don't betray that trust. What a person writes belongs to that person. By whatever means you receive a message, don't pass it ANYWHERE else without the consent of the author.

"Flaming" - shouting and screaming and putting other folks down - does break out occasionally, because people feel a lot of stress at times. When it does, try not to join the yelling - PLEASE. Don't compound the folly. There must be mutual tolerance, and as a support group we must look for reconciliation. No swearing please - we run on tolerance but also on respect; don't use boring words, we've all heard them.

Many of us have days when it is hard to be coherent but we are here together on good days and bad days and there is no test of good writing, just a need for every FMily member to show respect all round.

New subscribers are welcome to jump right in, although it might be helpful to read other messages for a bit to get the flavor of the group. If you want to introduce yourself, the place for that is under the SUPPORT topic.

Please try to limit discussion to fibromyalgia and to accentuate the positive. Sharing what you have done is positive and makes more friends.

If you would like advice on a problem, set out enough background for replies to be relevant to you - and remember that other people will tell you their own stories which may or may not be relevant to you.

Please don't be judgmental. Don't psychoanalyze another person on the basis of their messages or try to tell them what to do. Members of the group have already heard enough from others about how this fibromyalgia is all in their head or that they are complaining for attention. Since we only have the printed word to convey our messages, we have to be careful of what we type.

Please read your messages carefully before pressing "send". If in doubt, put your message aside and think about it tomorrow.

Use brief quotes only. Please don't post entire pieces from periodicals or long documents that are available elsewhere. Instead, quote the www address (the URL) or offer to send a message privately, giving your email address.

If you just want to say "me too", it’s best to write directly to the author, where you may actually feel able to say more and strike up a conversation. But we do want extra thoughts posted! Don't hold those back.

If you want people to write directly to you about something, add your e-mail address to your signature.

You can make a ‘hot key’ (by clicking on it, others will be able to bring up a new message with your email address already in it) using the syntax mailto:youraddress@yourserver.com

When replying to messages, it is best not to quote the entire original message. A little cutting and <snip>ing (you insert the word <snip> yourself) here and there will leave a general idea of the history to which you respond. Put your words at the top of the message in plain sight when the message is opened.

When you write with an opinion of the effectiveness of a particular approach to treatment, please try to indicate what source you have for a particular view. "My experience is...", "My doctor says...", "According to the author of ....", "I am coming to the view that..." - such expressions strengthen your point.

Signatures must be as short as possible and cannot contain advertisements including pointers to web pages that are commercial.

Don't send a message to FIBROM-L which you are also sending to other addressees at the same time. Those others might use the "reply to all" function and accidentally post to FIBROM-L. Please do not write to the list if you have left it or if you are set to NOMAIL. The only appropriate time to enter into discussion is when you are here with us. And please remember, all of the co-facilitators and administrators on Fibrom-L have FMS too. We try to keep this list running smoothly, but we have days just as bad as yours. We need your help to ensure that the list is as easy to read as possible. The ball is in your court in that regard.

**REMINDER**
The co-facilitators are not permitted to give advice about questions of copyright and do not condone the posting of material which contravenes the rules of copyright. It is the responsibility of anyone posting anything to this group to satisfy themselves regarding any relevant copyright issues.

HELP PAGE CONTENTS


Help Page continued ...

[Go to top of this page] [Go back to Online discussion groups contents page]


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 (masmith@spirit.com.au) - Canberra, Australia


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