Alex wrote :

"I wonder if people with cancer are finding other internet portals for
support. The postings are half was what they have been last year while
internet usage is up.  Going to a secured web page where people can use
their real names.   Usenet is known for being a free area and trying to
impose rules here ( even though they are not enforceable or endorsed by many
of the cancer patients here)."

Hi Alex,

It would be very interesting to know more about the "demographics" of who
uses this group, and who doesn't. I have not been around "here" long enough
to have a sense of what the usage patterns are and what influences them. I
suspect that somewhere, in some University or Teaching Medical Center,
someone is doing a thesis on forum use by people with cancer.

I would assume there are other forums for cancer patients or families on the
internet that are moderated and verification of "identity" is required ? The
thought occurs to me that I've never really looked to see if ACS at any
level (national, state, local chapters) sponsors moderated forums, or any
forums.

Many intelligent friends of mine have never heard of "usenet" still even
though they use the internet everyday for e-mail and for browsing web sites.
And many intelligent friends of mine, if they were in any form of medical
crisis, would never think about going on-line to discuss it. Well, okay,
yes, my friends and I are not of the IPod generation, or even GenX :)

An interesting arena for research :  are health care professionals in the
cancer "arena" actively informing people and/or encouraging them to use
interactive resources ? If I imagine myself a medical social worker once
more :) : I would certainly prioritize bringing cancer patients into "live"
support groups if possible, but for the isolated, the disabled, with access
to computer resources and the ability to type or someone to read or type for
them, I would definitely consider that a potentially valuable resource.

One hypothetical factor  : some people come here because of the relative
anonymity offered by the group. Often in crisis where they are desperate to
"tell their story" and connect with "friendly ears."

Another hypothetical factor : some people come here with a sense of "social
mission" for reasons they may or may not explain to the group. They want to
contribute because they've had cancer, or their spouses, relatives, friends
have had cancer, and they have learned a lot about it and want to help
others.

And like many other groups, networks form here, friendships develop,
polarities develop. I think that people coming here who observe the obvious
camaradie of some of the friends may be encouraged to view the group as a
"friendly" open place. Well, okay : make that another hypothesis. I think
it's been easy to see in this group where open conflict disturbs some of the
group members greatly. "Open conflict," by contrast in my experience in a
group like soc.culture.thai often led to valuable arguments that benefited
everyone ... when they didn't degenerate into the usual name-calling and
baiting : and some of these conflicts were actually praised by some group
members for the depth of the discussion.

The ACOR mailing list for Head and Neck cancers often has only a few
messages in it, but I read the bulletins "religiously" because there are
some great posts in them, particularly from "our very own" highly respected
Janet aka "Kellie Poodle." I think the ridiculously messy formatting of the
ACOR H&N list is a factor that would turn off many people : multiple
redundant ACOR signatures that distract you from the real content. When the
post about the esophageal ACOR list was made here, recently, I was surprised
by the extent of participation the poster described.

The most "successfull" moderated usenet group I know of is
rec.crafts.jewelery where the moderator has been performing a "labor of
love" for years, keeping the peace and screening posts. And the interests
craftspeople share in common is, imho, a powerful bond, and makes it
relatively easy (compared to a group like this) to distinguish between
what's on-topic and off-topic.

What's delightful to me is that this group is not over-run by trolls.
Soc.culture.thai used to be a really fun group for me to participate in :
about ten people really "made" the group : now it's so over-run with trolls
and flame wars it's not worth my time to visit and spend more time
kill-filing trolls than reading messages, and many of the old-time expat
posters, some of whom had mastery of the Thai language written and spoken to
a very high degree, have quit in disgust. Hope that doesn't happen here.

One thing for sure : if a usenet group is a "horse" : it's a horse that you
will never bridle. And that horse will change over time, guaranteed.

regards, Uncle Sally