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Thursday, 21-Aug-2003 03:15:41 EDT by Ed Anderson
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
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:
This guide is not a Frequently Asked Question (FAQ) file. Please see the
Psoriasis FAQ and Newsgroup Resources at:
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
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.
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:
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
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
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
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.
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.
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
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:
If anything here needs an update, please contact:
(but no html email, thanks)