Purpose of Alt.Support.Lupus (A.S.L.)

What is A.S.L.?

A.S.L. is a Usenet group called alt.support.lupus which welcomes anyone who has - or suspects they have - Lupus or a similar disease and anyone related to, caring for, or supporting them.

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What does this group provide?

It provides support in the form of commiseration, cyber-affection, information about treatments or treatment claims, help in understanding symptoms, lab results and legal/financial issues that are common to many Lupus patients.

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What Content is Appropriate for ASL?

ASL's purpose stated above should imply content. However, the following are the basic rules of Netiquette that members are asked to follow.

  1. No Flaming: i.e., Please do not harm the group or others with harsh criticism.
  2. No Peddling: Groups that support persons with chronic illnesses are often the target of "snake oil" salespersons. Though the members of the group do not mind suggestions for alternative treatments or supplements, posting advertisements for products of any kind is generally frowned upon.

    Guide to Live by on Usenet including This Group: If you earn a commission in money or in kind by advocating an item, do so elsewhere.
  3. Use appropriate Notations: Off-topic posts are welcome on ASL with the exceptions of advocating religious groups, political ideals and similar "flame-prone" topics. If a post is Off-Topic, that is not directly related to SLE, please indicate this by putting the proper notation in the Subject line. Examples: OT: My Dog is Sick. or OT: I'm Getting Married. This is not a hard and fast rule as threads often degenerate into humorous parleys or other OT discussions.

    If a post is OT but contains profanity or is a rant, than please try to remember to indicate such on the subject line. Again, this is not carved in stone. The group is dynamic and friendly and generally takes little issue, if any, with OT or Rant posts. These are, after all, parts of our lives and Lupus affects our lives in every way.
  4. Text Only: No pictures, video clips, music, etc. Try not to have a file attached to your signature and do not use "stationery". Stationery may look pretty but many of us just get dozens of little pictures in our attachments directory or other artifacts of little or no use.

    Try not to post in HTML, even if you also post in plain text (you may need to alter your news-posting software's settings.) If you would like to share pictures or other large documents with others in the group, please post only a website address where the file can be viewed or ask individuals to contact you for the download in private email.
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Who can be a part of this group?

You can! This is Usenet - so anyone who wants to be here, can be here. Our members consist of lupus patients (both SLE and DLE) as well as patients still in the throes of what you could call "diagnostic limbo". Other members of ASL include support persons who have family members, friends or co-workers that have some form of the disease. Still other members are folks who have similar diseases but not precisely the same as SLE or DLE and yet find that their symptoms are sufficiently similar to get information from this group. Physicians or Researchers are encouraged to participate in the group as long as they are not advocating their practice or a specific product. Advocating (for profit) in general is considered bad netiquette where support newsgroups are concerned. ASL is no different in this respect.

As this is an open (unmoderated) Usenet group, people will sometimes post material which you may find abusive, upsetting, indecent, offensive, etc. Please ignore it. Don't reply to such postings as it only encourages those who post them and may subject you to personal email that is equally offensive. These posts might be cross-posted, that is posted to several unrelated groups, either by accident or deliberately. For more on this topic, KC highly recommends Dianne's Patented Magic Flame Retardent

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To Suggest Links, Data, or Corrections

If you have links, data, or a correction you would like to suggest be added to these pages, please contact me directly with link name and description or with text you think would be relevant to these pages. Please include the area of this document for which the data would best be suited.

You may contact me KC at kcattx@gmail.com or Andy at andy@kitzbuhel.demon.co.uk if you have suggestions.

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