Board index » lasik-eyes » Support groups

2004-04-09 10:16:04 PM
There are support groups on the internet for a great many things.
These groups can be very helpful to people with a variety of physical
ailments because they are enabled to exchange notes and experiences
and advice with others who have similar experience. In many cases this
kind of exchange would not be possible in any other way than the
internet because of geographical distances, the difficulties of
locating other patients, time commitments, desire for anonymity and so
on.
I know that many people here have specific beefs with specific
individuals or organisations and I do not want to enter into that
discussion at all - frankly, it bores me.
But stepping outside of the specific people and places, it is a matter
of concern for me to see indiscriminent viciousness inhibiting people
from establishing support groups for RS patients. What will work? Will
anything?
It seems to me that if there is a bulletin board which is open for the
public to see, it will be forced to censor itself heavily (although I
hope not indiscriminently) because of unkind attacks on hurting
patients - attacks perhaps motivated by the fact that the exchanges
are available to the public and therefore to potential candidates for
surgery. Fine. Whether right or wrong, it's a fact and it means that a
publicly available support group cannot permit non-patients to
participate - and such a group would need to weigh its perception of
the value of it being public against the disadvantage of being subject
to ridicule and verbal abuse in other forums.
On the other hand, if a private bulletin board requiring registration
and perhaps some basic information about the patient (which is NORMAL
for a great many types of private online support groups for people
with physical ailments) were to emerge, I rather anticipate that once
it became known, the more persistent of the individuals who take
pleasure in this type of activity would find a way to get in and post
unkind things. That they might also, in this forum, ridicule it as a
cult is fine, that's their right and I don't care. But active
interference by determined people is serious, and can only be dealt
with basically by a fulltime caretaker. I do believe that that is a
primary factor inhibiting people from starting private forums to help
patients and enable them to support each other. Caretaking is
necessary, because active ill-intended interference would otherwise
wipe it out, but caretaking is difficult because in order to retain
any shred of respect, one has to be professional and adopt rational
and consistent standards and be openly communicative about those
standards and their application. Who's got the time to do all that?
Hence, no forums and patients don't have anyplace to go.
I have only limited experience of participating in other private
forums and I do not know how much active management they require.
Obviously, some subjects are so simple, non-controversial, and
unemotional that there is very little incentive for anyone anywhere to
interject themselves; RS is not one of them.
Does anyone have thoughts on how inter-patient support can
successfully be provided online without the patients being browbeaten
on their own "home turf" and without beating off the browbeaters
becoming a fulltime job?
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"Rebecca" <rebeccaNO_SPAM@lasermyeye.org>wrote in message
instances involves a few very specific people and a couple of very specific
websites. I should think it would be not very difficult to wipe the slate
clean, but you cannot do it with some of the current personalities. And
maybe posting doesn't have to occur in real time. A lag would be helpful.
being adequately and professionally addressed. People should be rewarded
for good behavior and ignored for bad behavior.
this group and SE can be traced back to a handful of people, and it had its
origins in SE whether you choose to admit it or not. I was there, I was
here, and I saw how it occurred.
any self-destructive behavior. Learn from the failures.
DrG
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I forgot to add: If there isn't a need for another anti-RS forum, then it
won't succeed, no matter what. However, I think there is a need for a good
forum on rehab...sans the politics, but this doesn't necessarily require a
bulletin board.
DrG
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lasik-eyes

In article <120ffab4.0404090616.61cd1f16@posting.google.com>,
rebeccaNO_SPAM@lasermyeye.org (Rebecca) wrote:
I have a few ideas. It seems to me that the downfall of certain BBs has
been due to the personality of the owner who sets a certain atmosphere
or culture for that particular board.
For example, I don't know much about SE except that the BOD has taken
the position to ban members and erase messages rather than dealing with
criticism, dissent, and debate in an open forum. There appears to be a
history of lawsuits or threatened lawsuits which has seriously detracted
from a free flow discussion. There are a good deal of secret messages
sent behind others' backs. I think that if people were allowed to speak
their mind on that board that people wouldn't complain about it in other
forums. For example, the BOD should have directly warned Minarik to quit
railing on the RS industry rather than couching it in an open letter
about "the community." When you have someone as self-absorbed as
Minarik, direct approach is best. He was obviously too wrapped up in
himself to get it.
Now DoctorMyEye has chosen to have itself characterized by a homepage
that equates the site owner with Martin Luther and its mission analogous
to the creation of protestantism. Rather high standards, no? If you
want to buy into all that divinity stuff, great. So far, except for
Raj's slide show, it's a site where Minarik can play at being god,
archive his sermons, and collect a congregation of "tortured souls."
(and pass around a collection plate).
I think that both you at LaserMyEye and Glenn at USAEyes.org have laid
the ground work for adding a successful BB. You both are rational
people. You take the time to explain. Respect that people are free to
make choices, but make it clear that choice has a responsibility that
goes along with that freedom. You are very knowledgeable about RS and
want that knowledge disseminated. At the same time, you have strong
opinions and aren't worried about voicing them. But you listen to the
arguments on the other side as well and are willing to debate them.
That's what I think would make a successful BB.
It may get messy sometimes. You definitely need a moderator who is good
a resolving conflict and reminding posters to stick to the rules of
common decency (something that cannot be done on a google forum).
Respect is earned, it's not a given. The best way to earn respect is
through example.
--
"The truth lies somewhere between Ragnar and Flap Melt"
~RT
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RT <RTMD24nospam@yahoo.com>wrote in
DrG
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In article <Xns94C6A127A3251DrLeukoma@207.217.125.206>,
"Dr. Leukoma" <drg@leukoma.com>wrote:
basically agree.
--
"The truth lies somewhere between Ragnar and Flap Melt"
~RT
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"Dr. Leukoma" <greggem@ix.netcom.com>wrote in message news:<wYCdc.3432$A_4.428@newsread1.news.pas.earthlink.net>...
message, I was speaking of a private online support group of patients
helping other patients, not an anti-RS forum.
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rebeccaNO_SPAM@lasermyeye.org (Rebecca) wrote in
DrG
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A bulletin board operated by USAeyes.org has been discussed, but is
really unnecessary. We link to the BBS created by Dr. Gerald Horn
(with his permission, of course) for our USAeyes.org website, and link
to the BBS created by Dr. William Trattler (with his permission, of
course) for our ComplicatedEyes.org website. Between these two BBS,
it appears that all needs are met.
Then there is alt.lasik-eyes newsgroup...
8^)
Glenn Hagele
Executive Director
Council for Refractive Surgery Quality Assurance
Email to glenn dot hagele at usaeyes dot org
www.USAeyes.org
www.ComplicatedEyes.org
I am not a doctor.
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Trattler? Isn't he one of SE's docs? Does he have permission to
have his own bulletin board?
On Sat, 10 Apr 2004 17:04:35 GMT, Glenn - USAeyes.org
<glenn.hageleSTOPSPAM@USAeyes.org>wrote:

RT <RTMD24nospam@yahoo.com>wrote in message news:<FuDdc.49568$EP5.2628@newssvr25.news.prodigy.com>...
Rebecca
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In article <120ffab4.0404101616.3384327c@posting.google.com>,
rebeccaNO_SPAM@lasermyeye.org (Rebecca) wrote:
--
"The truth lies somewhere between Ragnar and Flap Melt"
~RT
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I spoke with him several months after this announcement, he confirmed
that he had accepted that position, but had no idea what would be his
responsibilities or when they might start. I do not know what his
current involvement is with SurgicalEyes, if he actually continues to
hold that position, or if he every actually did anything for
SurgicalEyes other than lend his name to the group.
Dr. Trattler established www.AskLasikDocs.com long before he became
affiliated with SurgicalEyes. He has a very good bulletin board that
is to the point and quite helpful for patients. Generally, none of
the politics found here or at SurgicalEyes is present.
Glenn Hagele
Executive Director
Council for Refractive Surgery Quality Assurance
Email to glenn dot hagele at usaeyes dot org
www.USAeyes.org
www.ComplicatedEyes.org
I am not a doctor.
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