MPD-SUPPORT-L as a resource from MF [00490] Medicine On Line


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MPD-SUPPORT-L as a resource from MF



Dear Sara, 

Please consider subscribing to our mailing list MPD-SUPPORT-L and 
posting your questions to our other patients with MF. There are two MPD 
mailing lists. 

MPD-SUPPORT-L is the original mailing list for polycythemia, essential 
thrombocythemia, and myelofibrosis. We have 130+ subscribers from 9 
countries. The listowner of MPD-NET was originally a subscriber to 
MPD-SUPPORT-L, had a squabble, and then with one or two other 
MPD-SUPPORT-L subscribers stared her own list called MPD-NET, which she 
certainly was entitled to do. I personally feel however that it was to 
the detriment of ALL myeloprolific disorder patients to start a second 
mailing list, since many patients now feel compelled to subscribe to 
both mailing lists. 

MPD-NET practices censorship. For example, as a polycythemia patient, I 
can not freely post on MPD-NET. All of my messages are intercepted, 
reviewed, and censored. Consider that you might be the next patient 
censored on MPD-NET.  There is NO censorship on MPD-SUPPORT-L and there 
never has been any censorship on MPD-SUPPORT-L. 

Regards, 

Robert Tollen
List owner, MPD-SUPPORT-L
mensabrain@aol.com or mensabrain@smart.net
MPD-SUPPORT WEB PAGE: http://members.aol.com/mpdsupport

***

MPD-SUPPORT-L@LISTSERV.AOL.COM 

A myeloprolific disease medical mailing list focusing on polycythemia 
vera, essential thrombocythemia, agnogenic myeloid metaplasia, and 
myelofibrosis. 

Anyone - patient, family member, or health professional, is welcome to 
join. 

Our web page is at http://members.aol.com/mpdsupport

Our group started out about 2-3 years ago when just
two of us, myself included and using America on Line,
met after reading each other's inquiry posts in the
health section on AOL while looking for someone else
with polycythemia. Over the following months, we
added more and more people and grew into a group of
about 40 from around the world but mostly in the
United States, that would write to all by writing to
one and carbon copy the others. Because of size it
eventually became unmanageable, and we requested and
received help from AOL to start a myeloprolific
disease mailing list focusing on polycythemia vera,
essential thrombocythemia, and agnogenic myeloid
myelofibrosis. Our mailing list MPD-SUPPORT-L was
started around February, 1996. As a mailing list, many
more people know about us. Although our automated
software is on AOL, we now have 130+ subscribers from
9 countries all around the world and from all the major Internet
service providers.

To subscribe to MPD-SUPPORT-L, do the following:

Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: Anything you want but not blank.
Body: SUBSCRIBE MPD-SUPPORT-L John Smith
(Substitute your first and last name for John Smith's)

Or, you can simply navigate your web browser to:
http://cure.medinfo.org/x/EZ-Commands/MPD-SUPPORT-L
Our archives are located at
http://cure.medinfo.org/lists/cancer/mp_search_sl.html
for fast access and
http://cure.medinfo.org/lists/cancer/mp_search.html
for a more graphical one.
The general interface is at
http://cure.medinfo.org/lists/cancer/index_fs.html

Once subscribed, if you wish, send us a little
introduction explaining who you are, your
myeloprolific disease and your treatment history or
your professional interest, along with any questions
or comments you wish to post to our group.