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Medical Forum / Diseases and Disorders / Cancer / May 2004

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Creating a Leukemia Newsgroup

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Peter M. Brown - 14 May 2004 14:40 GMT
There are a lot of newsgroups for particular forms of cancer but none of
which are for Leukemia. How do I go about creating such a newsgroup?

Thanks

Pete
Lance - 14 May 2004 18:31 GMT
> There are a lot of newsgroups for particular forms of cancer but none
> of which are for Leukemia. How do I go about creating such a
> newsgroup?

There are two ways to create a newsgroup. The formal way to create a
newsgroup in the comp, humanities, misc, news, rec, soc, sci, talk
hierarchies. This involves announcements, discussion, votes, etc. Guidelines
for this procedure are described here:

How to Create a New Usenet Newsgroup
http://www.faqs.org/faqs/usenet/creating-newsgroups/part1/

The second way is to start an alt newsgroup (alt.support.cancer.leukemia
perhaps?). alt newsgroups don't have formal procedures, but there are
suggested methods to improve the acceptance of your newsgroup by other Sys
Admins:

So You Want to Create an Alt Newsgroup
http://www.faqs.org/faqs/alt-creation-guide/

Lance
*****
bj - 14 May 2004 18:47 GMT
There are some leukemia lists in yahoo groups.

> > There are a lot of newsgroups for particular forms of cancer but none
> > of which are for Leukemia. How do I go about creating such a
[quoted text clipped - 18 lines]
> Lance
> *****
J - 14 May 2004 19:36 GMT
> There are a lot of newsgroups for particular forms of cancer but none of
> which are for Leukemia. How do I go about creating such a newsgroup?
>
> Thanks
>
> Pete

Hi Pete,

Assuming you are looking for a support newsgroup.
Is there problems (or complications) with the ones (for leukemia) at
http://www.acor.org ?
I see there's at least 7 there (maybe more) AML, CLL, ALL-L, ALL-KIDS,
CLL-CN (Canadian), CML, HAIRYCELL
(3500 subscribers +/-)

or were you aware of (and tried to confirm that they are still active) the
ones here (and polled them to see if they thought a newsgroup would be used
(or not)
http://www.fcco.org/resources.html
HEM-ONC is a mailing list providing support for Leukemia, Lymphoma, and
Multiple Myeloma.
or A.L.L. DISCUSSION LIST

The main purpose being that you want to get as many people together, not
splintered out in various resources, yet meet a need (I guess) that is not
already addressed elsewhere.

and I see what Lance posted, reads in part, as follows:
http://www.faqs.org/faqs/alt-creation-guide/
* Not Proposed in alt.config:
Some newsadmins will not create any groups that haven't been discussed in
alt.config (and after waiting several days for the responses). Posting your
idea for a new group to alt.config is a very good idea anyway. Someone may
have already created the group you proposed, or something similar. They may
also point you to a mailing list that you might not have known about. They
also will probably tell you if your group is poorly named.  Eric Ziegast has
this to say about alt.config: [end quoted material from that web page]

If you are looking for discussions where doctors (specialists) *might* be
(or *might* go to discuss) you might want to create a hematology newsgroup (
sci.med.hematology )? Which might cover all blood diseases/conditions? and
would perhaps start with sci (instead of alt).  However, I see on sci.med
and sci.med.pathology they're not very active and/or not very keen on
answering patient questions.

If you decide to go ahead (and use alt.config), a poster named Hawk on
alt.config has 3 or 4 very good links in his signature.

Just thoughts,
J
Peter M. Brown - 14 May 2004 20:20 GMT
> > There are a lot of newsgroups for particular forms of cancer but none of
> > which are for Leukemia. How do I go about creating such a newsgroup?
[quoted text clipped - 8 lines]
> Is there problems (or complications) with the ones (for leukemia) at
> http://www.acor.org ?

The reason for a newsgroup is that many people prefer one medium over
another. I.e. some people who used a web based discussion forum have a
tendancy not to use newsgroups. People who use newsgroups have a tendancy
not to use web based discussion forums. When there is a person seeking a
quick answer to a serious Leukemia problem/question then it would be better
to have a newsgroup for it in addition to the web based forums. Especially
since I believe more technical people/scientists might tend to the
newsgroups rather then the web based forums.

I didn't care for the acor forum. Its setup is clumsy. I love the Leukemia
and Lymphoma Society's discussion forum over all other forums.

> The main purpose being that you want to get as many people together, not
> splintered out in various resources, yet meet a need (I guess) that is not
> already addressed elsewhere.

It is my experiene that different people have different preferances and as
such there will never be one place where everyone goes. For some reason I
don't understand, some people just won't use both.

> and I see what Lance posted, reads in part, as follows:
> http://www.faqs.org/faqs/alt-creation-guide/
[quoted text clipped - 6 lines]
> also will probably tell you if your group is poorly named.  Eric Ziegast has
> this to say about alt.config: [end quoted material from that web page]

Thanks. I'll check into it.

> If you are looking for discussions where doctors (specialists) *might* be
> (or *might* go to discuss) you might want to create a hematology newsgroup (
> sci.med.hematology )? Which might cover all blood diseases/conditions? and
> would perhaps start with sci (instead of alt).  However, I see on sci.med
> and sci.med.pathology they're not very active and/or not very keen on
> answering patient questions.

Too specific I think.

> If you decide to go ahead (and use alt.config), a poster named Hawk on
> alt.config has 3 or 4 very good links in his signature.

Thank you

Pete
J - 14 May 2004 22:42 GMT
> The reason for a newsgroup is that many people prefer one medium over
> another. I.e. some people who used a web based discussion forum have a
> tendancy not to use newsgroups.

Possible but not necessarily but I realize asking the same question (or
belonging to) in two different mediums can be a time-consuming process.

> People who use newsgroups have a tendancy
> not to use web based discussion forums. When there is a person seeking a
> quick answer to a serious Leukemia problem/question then it would be better
> to have a newsgroup for it in addition to the web based forums. Especially
> since I believe more technical people/scientists might tend to the
> newsgroups rather then the web based forums.

Well, it's my understanding that (some) ACOR groups do have technical people. I
don't know which.

I don't know how they handle legal liability.

It's a problem here for some doctors who've left. (Americans)

Here's a quote from one.
"The warning came from my liability insurer, as part of a malpractice course.
They specifically noted that any doctor -- patient communication establishes a
relationship; and made a specific warning NOT to participate in usenet groups or
provide "electronic advice."
I subsequently asked about my "disclaimer" and was told that was NOT sufficient.
The fact that I might offer advice without a full evaluation was fealt to
increase my potential liability. I was specifically told NOT participate. I
don't think an anonymous service would shield me since a court order to provide
my name/location would be fairly easy to obtain, at least an American lawyer
could probably obtain my name, and given that I live in America a lawsuit could
then follow. It should also be noted that the legal department of the Hospital
of the University of Pennsylvania (home of one of America's finest law schools,
as well as medical schools) gave them the same advice.

If I participate, I lose my malpractice coverage. Disclaimers, and even the
support group purchasing malpractice wouldn't relieve me of that liability.

As you know, due to medical liability issues I no longer participate in  the
group. You may, however, post any of my prior responses in the FAQ  section.
Better yet, fix medical liability so I can return."

So what I'm saying is you may have problems getting scientists/technical people
answers here or any newsgroup (unless they're in other countries AND time is a
factor for many of them, they have their own work-related responsibilities.

FWIW

J
PS I'm not sure where he got the idea of a "newsgroup" paying his liability
insurance. That wasn't my idea, nor would it be practical.
J - 14 May 2004 22:49 GMT
> "J" <jarretière@example.net> wrote in message
> <snip>
[quoted text clipped - 4 lines]
>
> Too specific I think.

I see what you mean, on the other hand, it would included non-cancer blood
health issues, which would have made it not specific enough, but possibly more
chance of drawing teckkie poeple.

> > If you decide to go ahead (and use alt.config), a poster named Hawk on
> > alt.config has 3 or 4 very good links in his signature.

Peter, if you decide to go ahead, please be aware of the alt.support.cancer
newsgroup Charter
http://www.cancersupporters.com/asc/charter.html
Crossposting to related newsgroups is permitted but there are certain subjects
(or posters or behaviours) who are discouraged or in some cases reported. So
something to keep in mind and read so you can warn your readers and posters
about cross-posting.

Do let us know. In the FAQ part (Links I think) we put names of other cancer
newsgroups and/or someone here or on the alt.support.cancer newsgroup can refer
to "your" newsgroup or you can post yourself (at regular intervals) under the
subject of Leukemia, once it's up and running and many servers are carrying it.
J
Pmb - 14 May 2004 23:04 GMT
> > "J" <jarreti?re@example.net> wrote in message
> > <snip>
[quoted text clipped - 25 lines]
> subject of Leukemia, once it's up and running and many servers are carrying it.
> J

I think the Leukemia-Lymphoma Societies Discussion Board needs more
visibily. See http://www.leukemia.org  - click on "Discussion Boards". Who
better for a Leukemia-Lymphoma discussion board than them? :-)

Thanks

Pete
J - 30 May 2004 21:22 GMT
> I think the Leukemia-Lymphoma Societies Discussion Board needs more
> visibily. See http://www.leukemia.org  - click on "Discussion Boards". Who
[quoted text clipped - 3 lines]
>
> Pete

Well, why is there duplicate websites (please)?
http://www.leukemia.org/hm_lls
http://www.leukemia-lymphoma.org/hm_lls
J
 
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