Internet Cystic Fibrosis Support Group(s)

CRTRUEWO at MAIL.OPM.GOV CRTRUEWO at MAIL.OPM.GOV
Fri Aug 11 19:14:08 EST 1995


* * * WHAT INTERNET CYSTIC FIBROSIS SUPPORT GROUP(S) EXIST?

     CYSTIC-L has functioned for the last couple of years as an email support
group for people with Cystic Fibrosis and their friends, families, and
health-care providers.  It includes both casual banter about the varied
impact that CF has on our lives, as well as technical and medical information
exchanges that help us to overcome the more unpleasant factors that this
silly little gene imposes upon us.  Currently, membership is 200-300, mostly
parents and patients, and some health care professionals.  Most subscribers
are in the USA, some are in other countries (most in countries where English
is a primary language).  Everyone with an interest in CF is invited to join;
we'd be glad to have you!  To start a free subscription send an email message
to LISTSERV at yalevm.cis.yale.edu -- do *NOT* send this note to CYSTIC-L! --
that says only:

               SUBSCRIBE CYSTIC-L your-first-name your-last-name

* * * SO WHAT'S NEW?

     A Call-For-Votes (CFV) recently posted to this group proposes that a new
Usenet newsgroup -- sci.med.diseases.cysticfibrosis -- be established with a
duel aim:

     The proposed newsgroup, sci.med.diseases.cysticfibrosis is intended
     for discussion about the many different aspects of CF as
     experienced by patients, their caregivers, friends and family
     members, doctors and other medical professionals, or anyone
     affected by or involved with CF, as well as those who wish to learn
     about its symptoms, latest treatment options and its prevention.

     (This is the first sentence of Charter of the proposed newsgroup
     sci.med.diseases.cysticfibrosis.  PLEASE SEE THE CFV POSTED TO THIS
     GROUP FOR THE COMPLETE PROPOSAL.  To receive a copy of the Call For
     Votes (CFV), send mail to cfv at syra.net and request the CFV for
     sci.med.diseases.cysticfibrosis).

* * * IS THERE A PROBLEM?

I have discussed my concerns about the effects on the Internet CF community
of having two Internet groups serving as CF support groups with the
votetaker, and he has approved my sharing these concerns with you.

I don't think anyone objects to the establishment of a vehicle for the
exchange of scientific/medical information and opinion on CF.  I for one,
would expect to be an avid lurker on such a group.  However I strongly feel
the establishment of a rival CF support group is not in the best interests of
those needing such support.  I believe splitting patient support venues
dilutes the invaluable sense of community necessary to a discussion/support
group (e.g., when someone has a question about others experiences with a
given practice, the question would have to be posted to both the mailing list
and the newsgroup to reach the entire community; likewise when emotional
support is needed during hard times).

Simply put, the support fuction of the proposed newsgroup duplicates the
function of another Internet resource -- CYSTIC-L.

* * * SO WHY DOESN'T CYSTIC-L SHUT DOWN IN FAVOR OF THE NEWSGROUP?

Everyone with any level of Internet access has email, and can therefore fully
participate in a mailing list like CYSTIC-L; not everyone has access to the
Usenet.  Some subscribers feel that the additional step of subscribing to a
mailing list helps deter unhelpful, non-supportive messages.

Frankly I'm surprised that the support group traffic would be welcomed by
those seeking exchange of scientific/medical information and opinion on CF;
it seems to me it would get in the way.  I am certain the scientific/medical
exchange would tend to chill the support function.

* * * WHY DID YOU WAIT UNTIL NOW TO BRING THESE CONCERNS UP?

M. Johnson (who is proposing the newsgroup) proposed this idea to CYSTIC-L
some weeks ago, and asked permission to mirror CYSTIC-L on his proposed
newsgroup.  After some discussion, CYSTIC-L rejected the notion.  Many of us
on CYSTIC-L formed the impression that M. Johnson had agreed to drop the
support group aspect from his proposed newsgroup.  The CFV revealed that this
did not happen.

* * * WHY ARE YOU TELLING ME ALL THIS?

I hope you will be persuaded to vote against the newsgroup as presently
proposed.  Please follow the instructions for voting in the CFV very
carefully to ensure that your vote counts.

Once the support group aspect is actually removed from Mr. Johnson's proposal
I'm sure we can all support the establishment of his newsgroup.

Thank you for reading this.  If you have any questions please email me at
crtruewo at mail.opm.gov

                    - Ron Trueworthy




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