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On Wednesday Natalie Shaw posted her summary beginning with the following
quote:
"The overwhelming response to my post was positive: people are getting tired
of singular opinions being posted as fact."
Following this was a summary of 10 posts for her proposal and one against.
I did not think I should leave this discussion with the impression that the
feeling of the list was "overwhelming" in favor of restricting posts, so
following my post, which was for allowing list members to post whatever
they want and leaving the policing up to the listowners (whom I believe do
an excellent job) I received one post in favor of list police and 22 for
leaving it as it has been in the past. I have included some from each post,
though I left out two which were anti policing, but too personal to include.
***thanks again for your voice of reason. In addition, I think
that one's personal experience, from a life lived with celiac and/or with
celiacs, should be given due weight. Who knows one's body better than
oneself- certainly not a physician who sees you once a year for 15 minutes!
Or a researcher who looks at one aspect at a time, but not the holistic
experience. Cheers-
***Bravo. One thing I've learned from having a child with a disability and
then discovering both of my kids and myself have CD is that physicians and
scholars sometimes don't see the forest for the trees. If CD had only one
symptom, then we as people with the disease wouldn't constantly see links
between it and other variables. However, since its symptoms run the gamut
depending on the individual, then only those with no form of free thought
wouldn't wonder. I'd rather have a list full of "wonderers." By the way -
I'm Irish and not the least bit offended by your humor - if we can't laugh
then who can?
***Thank you for taking the time to express so clearly exactly what
I have been thinking. I am 54 years old and was diagnosed in 1971.
I have learned over the years to do exactly what you suggest. And
I joined the listserv so that I may continue to learn about the
experiences of other celiacs as well as learn new information on
our disease. And to enjoy a little celiac humor!
***Very well said, I hope someone reads this and listens and reacts. I
thought this is getting to be the Abagail list which I don't like. Even the
so called specialist Dr can be so very wrong. I want to put my story on
this list but I can already see that it won't be believed, maybe I don't
care if it is.
I think the scientific proof is in each person with celiac disease.
***I'm with you all the way. I'm French speaking and wouldn't have been able
to explain my thoughts so beautifully and succinctly.
***I agree completely. And I am not even Irish.
***Thank you. That was much needed! And I'm not even Irish... :-)
***Kudos, Vance. I do believe we lose our collective sense of humor at
times. Perhaps it is the heat or frustration with the diet. I fear that
posts such as the one requiring documentation, can scare the "newbies" and
people who are timid right off the list. What a shame this would be for all
of us. Our support group has over 40 members; only two subscribe to the
list. I know that if one person would be scared to voice a problem, opinion
or question, others would follow - perhaps that would leave thee and me and
our illustrious list owners who do such a terrific job and others who
"stand and wait."
***Thank you, Vance! I'm part Irish, too. :) J.
***Thanks,
***I agree with you totally. We can learn from many sources in many ways. I
agree that one should not state something as fact without evidence, but I
wonder where I would be if I went along merrily with the medical
profession. (I must qualify that also, because I have had some good doctors
in my life too.) What if I had never wondered, never challenged and
examined "what ifs". What if l discarded the other thoughts that I have had
about links to my problems before learning that I had the CD without the
usual symptoms that the medical professions and research (or lack of it)
proclaimed I should have.
It is the "what ifs" that sent us to the moon and practically every other
innovative thought that mankind has had! My most exciting projects are the
what if I put this with that, etc. When I don't think a statement is valid,
I read, decide and hit the delete button. It is so simple to do in the
privacy of our own home. No need to fuss. The biggest sin is discouraging
those who may not have the education about CD by being haughty or holier
than thou. As a special ed teacher I know even with the other educated
teachers, some just don't have computer savvy or enough internet experience
to find what they are looking for - I know I have days like that. Now what
about those stricken with this problem who are really limited? Do we help
them or do we put them down and add another blow their fragile self esteem?
Oh well, I guess I am getting myself worked up. Thanks for the logical and
understanding attitude.
***Thank you for putting so eloquently your point.
I also think that putting across what you understand to be the raison d'etre
of the forum is important, mainly because it is one that I agree with.
***Here! Here! Polite and to the point- Thanks for speaking up for so many of
us who enjoy the open forum and typically friendly nature of this list.
Keep them jokes a coming,
***Three cheers from me also Vance!! It is good that you try to get people
to maintain some sort of balance on this listserve. I have learned much
from your posts myself, and it seems that too often we wind up with witch
hunts instead of discussion. Too bad the spirit of informal information
gathering and sharing can turn to the negative so quickly. Thank you again,
***Thank you so much for your post.
Our family is fairly new to CD -- only a few months -- and this list has
served as a lifeline to us. We live in a rural area and information is
limited. Between the internet connections to CSA, etc., and this list, we
have been able to put together a GF diet and my husband is getting better.
In fact, his follow up bloodwork was negative and his follow up biopsy showed
his intestine is healed. We appreciate the questions about connections to
other conditions and what ifs and find them thought provoking and
enlightening.
***Thank you for your comments. I agree with you and appreciate that you
expressed so well exactly my thoughts about the subject. It doesn't work to
tell people what to say and how to say it or dictate preferences for
whatever...we must let people speak freely and the readers can use their own
judgment about what to accept or reject. The delete key is available to all.
All topics, even the ones off course, quickly run their course and
respondents help to keep people on track. Responding to the individual who
wrote a questionable post is the best way to respond....don't try to censor
or criticize for everyone else. We all read and search for answers....once
in a while we encounter a sentence buried somewhere that makes a light bulb
go off and we have one more tiny piece of the puzzle......don't try to stamp
out those obscure tidbits of information and opinions...you never know when
it might be very significant to just one person who reads it!
***As usual, thank you for a balanced look at our "sometimes, somewhat
unbalanced" members.
I, too, look at this webring as a support group where anyone, within reason,
should be able to express their opinions, thoughts and feelings. Only a
celiac can understand some of our questions, concerns and humor - we need to
be able to connect with others "like us".
***To corroborate -- The trouble with email is that we lose the lovely
subtext of intonation, facial expression, and body language, and so are prone
to misunderstanding.
Thanks for another lovely post!
***I spent a good part of last evening trying to word an appropriate response
to Natalie's post. Thank you for doing it for me. Since there is still
so much to learn about Celiac Disease, I like to hear about experiences
and theories that people have. I don't mistake these posts for fact and
I'm surprised other people can't deal with them.
***YOU GO VANCE!!!
No conclusion needed. But I do wonder why some would restrict certain kinds
of discussion because they believe others (not so intelligent as they?)
will be misled. Such a tenor begins to feel a little too elitist for my
comfort. -vance
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