Wayne

What would you like to see added, removed, or changed, concerning this site.

Moderators: Rosie, Jean, CAMary, moremuscle, JFR, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

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TendrTummy
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Wayne

Post by TendrTummy »

LOVE Mike's suggestion about having journals. If we could have a way to track dietary and symptomatic changes on HERE, it would be SO nice :) Then the info would be right at our fingertips and anyone else's we cared to share with.

Also, I wanted to suggest we have a medical survey of sorts, consisting of a long list of medical questions, such as one you get before going in to see an allergist. They want your complete medical history. We could designate certain answer "fields" and use this information as a way to gather statistics, if needed, or a wide range of information involving ALL of our members. I think this is something that should be part of registering, i.e. you have to do it in order to post, so that everyone WILL fill it out; otherwise, they'll probably be too lazy to do so..

We could use it to QUERY for information, such as how many of us contracted MC between the ages of 20-30? And which users are using Asacol to control their symptoms? Etc.. This information would ALSO be very handy should a GI such as Dr. Fine ever be interested in gathering data from our group. You never know, we could grow to exceed the size of Sally's board!!!!

Christine
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TendrTummy
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ALSO!!!

Post by TendrTummy »

I wonder if it's possible to set up a "tickler" file to let us know when it's someone's birthday! they have "sticky notes".. you'd think they'd have a tickler file.. this would give us a "message" when it was someone's birthday just to give us a heads-up. Makes the PROGRAM do the work of reminding, not us. Just a thought..
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tex
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Post by tex »

Christine,

I'm not sure that I see the distinction between "Journals", and "Medical Profiles". Can you 'splain that to me in simple terms?

I think a survey should be voluntary. I realize that I'm not a typical MCer, surfing for a place to find suport, but I can guarantee you that when I first found Sally's board, if I had encountered a place that required me to fill out a long-winded, nosey survey, (or even a short-winded, unobtrusive survey), as a prerequisite for registration, I would have moved on in a heartbeat, (no matter how great the site looked otherwise).

This is just my opinion, but I'm also opposed to asking a bunch of nosey questions in the responses to a first post that a newbie makes to the board. There's plenty of time for that later. I've noticed a number of newbies who never posted again, on the old board, after being hit by a barrage of intense questioning. I would feel the same way, if I were in their shoes. Get to know them first, answer any questions that THEY asked, and ask only a few essential questions, if we need more information in order to answer their questions. They will be happy to reveal all that information to us once we become friends, but personally, I start getting nervous, when a bunch of strangers start grilling me right of the bat.

Peggy has agreed to handle the Birthday Room, just as she did on the old board. I believe that she will be happy to be the "tickler".

Tex
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Post by moremuscle »

I agree with Wayne about the questionaire. I don't think it should be something that is required. Somehow, I don't know why, but somehow I do not want to share my medical profile on the internet. I have never posted my medical profile even on the old board. There is something there that bothers me - the ability of strangers (and I don't mean you fellow board members) to gather that kind of information about me does not appeal to me. I am otherwise not holding anything back LOL!!

I think Peggy will do a super job with the birthday room, just like she always has!

Love,
Karen
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Post by starfire »

I think Peg enjoys being the Birthday "Tickler". :grin:

I wouldn't have filled out a questionaire to join either. I won't even fill out a "visitor's card" if I go to a new church. Guess I'm hard headed that way.

Since I know everyone now, etc., I would be willing to fill out a questionaire as long as the questions weren't "out of line".

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
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Post by mle_ii »

tex wrote:I'm not sure that I see the distinction between "Journals", and "Medical Profiles". Can you 'splain that to me in simple terms?
A journal is just that a journal. Something you write in on a day to day basis. This can contain medical info, what's going on in your life, how your feeling, what your eating, etc. Maybe with that people can see stuff in their profile that might match up with their symptoms or others might see it. Or they might even just say hi in your journal or give you a high five a pat on the back, etc.

Just a way of sharing with each other and it also allows you to see a history of a person.

A medical profile just sounds so well... medical. Doesn't sound like a live and living document like a journal does.
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barbaranoela
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Post by barbaranoela »

well I am getting closer to being smarTer(almost like HarTer) -- :razz: :lol:

think I shall get it soon---

luv Barb
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tex
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Post by tex »

Mike,

Ok, you mean a diary-type journal. Yeah, that's sufficiently different from a medical profile that we probably should have both options, so people can take their choice when they feel like writing. Some individuals don't like to add to their stories on a daily basis, and obviously, some do. Thanks.

Wayne
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Post by Babci »

Hi all
Just noticed (duh) that we now have post reply instead of locked. Thanks Wayne. What a great job you are doing. I also would love an annonymous questionnaire about food intols, meds, age, age @ DX, etc., but agree that I would not like it to be mandatory. It would be helpful to me still to see "foods that most of us avoid" & "foods that most of us do ok with". Thanks agian to you all for your loving support & help. Norman every day, yeaaaaaaaa!! :grin: Love & light, Rita
Gluten, Dairy, Eggs, Soy & borderline yeast
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