Hi Fellow F.M.s (a gold star to whoever guesses what this means)!
I have been thinking all day (uh oh, look out!) and I am ready to start developing some materials for newbies. Anyone else care to join me?
We have an incredible opportunity here......a large core group of initial members who can put together our collective experience in private before we allow the world to read it. I know that this will be THE best MC website ever!
Here's what I am envisioning for starters. A "Welcome to Newbies Room" that contains perhaps some of the following....... an introduction (a paragraph or two about us and how we got here......i.e refugees from Sally's board when she closed it down (we could even give credit to Sally for providing the opportunity for us to meet and learn so much about MC), our interest in sharing our collective wisdom, some stats about us (like the poll Mike is doing on LC vs. CC - we could look at all kinds of data....how many years we've had MC, geography, anything we want).
Secondly, for this newbie room, maybe we could develop some "one-pagers" on different topics. A good start might be a topic titled "What We Have Learned About MC....or What We Wish Our Doctors Had Told Us". This could be things like the fiber issue, gluten connection, medication issues, probiotics, practical suggestions (Depends, Gatorade, how to travel). Maybe Gaea will dust off/update her "treatment" article and move it here. Of course, we'll need a good scientific overview of MC. What other thoughts do you have?
I may regret this, but I am volunteering to try to put the topic ("What We Have Learned About MC") together. It will be developed by consensus. If each of you would please toss out your ideas - either on this thread or by private email if you'd rather, I promise to pull it all together and paste it here for your review. Everyone's comments and suggestions for revisions, additions, or deletions will be incorporated into the final document.
Thirdly, I am wondering if it might be easier for newbies to have a place to introduce themselves right in the newbie's room. It is probably formidable to break into the General Board the first time, especially since we all know each other so well and act like family much of the time. Remember how newbies kept posting on the "Welcome to Newbies" thread on Sally's board, even though requested NOT to post there?
Hey, none of the above is written in stone. I hope you don't think I'm taking control or anything. I'm just anxious to try out this consensus process. Anyone who wants to write or poll or express the opinion about anything is more than welcome. I see this a one huge GROUP project (just like Joanna's group hugs!) LOL!
So, if you think it's a good idea, send me your thoughts on the "What We Have Learned" topic, please. We don't even have to ever use this topic - it can just be a test for the group process.
Love,
Polly
OK, is anyone ready to roll up their sleeves?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gold star!
Forum Moderators...do I get one? 
Gaea's article
I have Gaea's article saved from when she first sent it to me for proofing and any thoughts I might have - you and Sally were involved in that, too, as I recall. It's in a Word doc. Let me know if you want me to send it to you.
Peg
Peg
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TendrTummy
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*Founding Members*
we are the *Founding Members* of this board... :)
Polly, I volunteer to be an "editor" of whatever material is put together. I have spelling and grammar pet peeves and it comes in handy sometimes..
Christine
Polly, I volunteer to be an "editor" of whatever material is put together. I have spelling and grammar pet peeves and it comes in handy sometimes..
Christine
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harvest_table
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Polly, great ideas!
Polly,
These are great ideas and with the collectively experience, knowledge and motivation of the members here I'm sure you can come up with something great. I like the idea of a newbie room too, and yes I noticed alot of newbies posted in that section on Sally's board. Thanks for offering your time, and Christine for editing. I'll put my thinking cap on the next couple days.
I hope we will all stay excited as we are now and really put on our thinking caps to come up with more creative ideas for other rooms and good things to add to this board. It's very exciting and I'm so glad to be a part of such a great group of MC'rs who in turn have become such good friends. Love, Joanna
These are great ideas and with the collectively experience, knowledge and motivation of the members here I'm sure you can come up with something great. I like the idea of a newbie room too, and yes I noticed alot of newbies posted in that section on Sally's board. Thanks for offering your time, and Christine for editing. I'll put my thinking cap on the next couple days.
I hope we will all stay excited as we are now and really put on our thinking caps to come up with more creative ideas for other rooms and good things to add to this board. It's very exciting and I'm so glad to be a part of such a great group of MC'rs who in turn have become such good friends. Love, Joanna
Hey FM's
My mind was really traveling with those letters. Aren't you the ambitious one Polly? Since I'm actually a "newbie", I'll be happy to help any way you think. Lots of info on Fibro & pretty well versed on psychotropic meds. Could also do a "newbie" view. What do you think about the whole sponsor idea that came up on the old board? Not sure how that would work but it Luce & Wayne emailed me w/warm welcomes & suggestions & it really made me feel like I belonged here. Did Barbara ever make it on? Love & light, Rita
My mind was really traveling with those letters. Aren't you the ambitious one Polly? Since I'm actually a "newbie", I'll be happy to help any way you think. Lots of info on Fibro & pretty well versed on psychotropic meds. Could also do a "newbie" view. What do you think about the whole sponsor idea that came up on the old board? Not sure how that would work but it Luce & Wayne emailed me w/warm welcomes & suggestions & it really made me feel like I belonged here. Did Barbara ever make it on? Love & light, Rita
Thanks for your great ideas and offers of help. WOW! Do we ever have lots to share! Peg, yes, please send me the treatment document. Thanks. TT - thanks for your editing offer. But send your ideas too - you are an expert on C. diff and GB disease, don't forget. And you win the gold star! I don't see a star emoticon, so I'll just have to owe you one.
Love,
Polly
PLEASE FORWARD IDEAS AND/OR WRITEUPS TO ME. We're on our way!
Love,
Polly
PLEASE FORWARD IDEAS AND/OR WRITEUPS TO ME. We're on our way!
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moremuscle
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Hi Polly,
I am ready to roll the sleeves up. I couldn't believe my eyes when I opened the board tonight and saw all the different topics in a list on the home page. Every day the board takes more and more shape; thanks to Wayne in large part for working tirelessly behind the scenes. With such creative minds as his and yours, Polly, the board will soon be an unmistakable reality.
You excused the fact that you are taking control, but Polly I feel like encouraging you to do that; we all trust your judgment and appreciate you taking the lead. Thank you.
I can't think of anyone who I would rather have write about "what we have learned so far" than you. I have said it before but I will repeat it here: You have a gift for being able to summarize and draw clear lines. I will be looking forward to reading your drafts and giving my input in response to it as it takes shape. Please email me or post it here as you progress if you would like to get feedback. I am sure TT will be a great editor as well - awesome, TT!
In relation to your thoughts about a newbie room I have some not so well defined thoughts. I will try to put some of them to the paper here - they are by no means written in stone.
Some of the things that came to my mind when I read your post was:
a) An introduction to Dr. Fine and Enterolab and the tests.
Introducing newbies to Dr. Fine and his work this way will enable us to give the newbies a relatively informative (I did not say objective) and balanced first impression.
b) A brief history of Microscopic Colitis - when was it first diagnosed, how does it differ from Crohns and UC, treatment methods then and now, the number of people afflicted, the possibility that many IBS are actually MC sufferers that are misdiagnosed.
c) Mention of the medications that are commonly used for treatment of MC; how they affect people, the pros and cons of each; perhaps a rating of the most commonly used meds.
I think it is an excellent idea to have the newbies introduce themselves in a newbie room. I agree that the GMB can be intimidating at first when you see the kind of relationships and bonds that we have already formed with each other - it should not serve to exclude anybody.
Love,
Karen
I am ready to roll the sleeves up. I couldn't believe my eyes when I opened the board tonight and saw all the different topics in a list on the home page. Every day the board takes more and more shape; thanks to Wayne in large part for working tirelessly behind the scenes. With such creative minds as his and yours, Polly, the board will soon be an unmistakable reality.
You excused the fact that you are taking control, but Polly I feel like encouraging you to do that; we all trust your judgment and appreciate you taking the lead. Thank you.
I can't think of anyone who I would rather have write about "what we have learned so far" than you. I have said it before but I will repeat it here: You have a gift for being able to summarize and draw clear lines. I will be looking forward to reading your drafts and giving my input in response to it as it takes shape. Please email me or post it here as you progress if you would like to get feedback. I am sure TT will be a great editor as well - awesome, TT!
In relation to your thoughts about a newbie room I have some not so well defined thoughts. I will try to put some of them to the paper here - they are by no means written in stone.
Some of the things that came to my mind when I read your post was:
a) An introduction to Dr. Fine and Enterolab and the tests.
Introducing newbies to Dr. Fine and his work this way will enable us to give the newbies a relatively informative (I did not say objective) and balanced first impression.
b) A brief history of Microscopic Colitis - when was it first diagnosed, how does it differ from Crohns and UC, treatment methods then and now, the number of people afflicted, the possibility that many IBS are actually MC sufferers that are misdiagnosed.
c) Mention of the medications that are commonly used for treatment of MC; how they affect people, the pros and cons of each; perhaps a rating of the most commonly used meds.
I think it is an excellent idea to have the newbies introduce themselves in a newbie room. I agree that the GMB can be intimidating at first when you see the kind of relationships and bonds that we have already formed with each other - it should not serve to exclude anybody.
Love,
Karen
Along similar lines I wonder if an introduction to testing food intolerances might be a good one as well. Both self and laboratory.moremuscle wrote:a) An introduction to Dr. Fine and Enterolab and the tests.
Introducing newbies to Dr. Fine and his work this way will enable us to give the newbies a relatively informative (I did not say objective) and balanced first impression.
And furthermore...
I like the idea of putting the introductory stuff up front in a very professional, yet understandable form.
If we look like we know what we're talking about, and are well-organized, newbies and searchers will stay around.
Actually, I think that often times when people first get a diagnosis, they're looking for GOOD information in an organized format that's written by folks who really know what they're talking about as opposed to what we like to do once we get to know and like each other -- chit chat, ya know.
Soooo...perhaps the order of these things should be such that it's progressive learning from the intro. on. Thus, the reader could be encouraged from the git-go to write down any questions as they read along, and that at the "end" of the tutorial stuff, they'll be given an opportunity to ask these questions.
Somehow I just think, as I'm fairly certain you're thinking, that we should go from the more formal intro stuff with the general message stuff more to the back. Birthdays, jokes, etc., might even be behind the general message board. We don't want to scare anybody off, now do we?
Polly, is there any way you could use any of the introductory letters that have been written to newbies individually on the board? Just bet if you looked at a number of the most complete ones, that you could compose a good composite from them.
Is anyone collecting copies of all the recipes and products?
Whops, do ya think that we could have separate recipe/product lists for each of the various food intolerances?
That way, when a new one pops up it's ugly head, one doesn't have to read through all the ones that no longer apply.
One thing that I think would lend LOTS of credibility would be to do the intro, topics, etc. sort of like a scientific paper with references in parentheses which would refer the reader to the specific papers in which these ideas are located. There might be times when they would come from OUR discoveries as a group, and that could be explained in the body of the paper, perhaps.
Another thing that I think would be reallllly nifty would be to have as many of the KEY researchers as we could get to do it, write a few words describing where we're at in terms of research, and what to look forward to in the future. They could even include where the disagreements lie if they so chose.
I was thinking of people like Drs. Fasano, Fine, and Green, for instance, for the gastro part. Their intro's could state the various positions that they have held, there accomplishments, etc., but very briefly.
Then there's that neuro guy with the long name that Peg found for me the other day.
It would be nice if we could have a really good list of the BEST sites for related diseases as so many seem to have the other AI things.
Guess what I'm thinking is that there might need to be a "scientific" discussion room for those who like to speculate which would naturally refer to all kinds of research from the net, but there also needs to be a "controlled" list up closer to the front which would only contain the most pertinent information, and which would be maintined and updated by the moderators, perhaps with Polly's oversight, for instance.
Do you suppose that you could get Ty to do a little write up on AI disease/s, including Type I diabetes?
Maybe he could even get his boss lady to do it -- isn't she supposed to be a biggie in the insulin dependent diabetes research?
Perhaps Dr. Fasano would like to keep us up to date on Zonulin research and related GI topics, etc.
Wow, wish I wasn't so sleepy. Hope this makes a little sense.
Yours, Luce
If we look like we know what we're talking about, and are well-organized, newbies and searchers will stay around.
Actually, I think that often times when people first get a diagnosis, they're looking for GOOD information in an organized format that's written by folks who really know what they're talking about as opposed to what we like to do once we get to know and like each other -- chit chat, ya know.
Soooo...perhaps the order of these things should be such that it's progressive learning from the intro. on. Thus, the reader could be encouraged from the git-go to write down any questions as they read along, and that at the "end" of the tutorial stuff, they'll be given an opportunity to ask these questions.
Somehow I just think, as I'm fairly certain you're thinking, that we should go from the more formal intro stuff with the general message stuff more to the back. Birthdays, jokes, etc., might even be behind the general message board. We don't want to scare anybody off, now do we?
Polly, is there any way you could use any of the introductory letters that have been written to newbies individually on the board? Just bet if you looked at a number of the most complete ones, that you could compose a good composite from them.
Is anyone collecting copies of all the recipes and products?
Whops, do ya think that we could have separate recipe/product lists for each of the various food intolerances?
That way, when a new one pops up it's ugly head, one doesn't have to read through all the ones that no longer apply.
One thing that I think would lend LOTS of credibility would be to do the intro, topics, etc. sort of like a scientific paper with references in parentheses which would refer the reader to the specific papers in which these ideas are located. There might be times when they would come from OUR discoveries as a group, and that could be explained in the body of the paper, perhaps.
Another thing that I think would be reallllly nifty would be to have as many of the KEY researchers as we could get to do it, write a few words describing where we're at in terms of research, and what to look forward to in the future. They could even include where the disagreements lie if they so chose.
I was thinking of people like Drs. Fasano, Fine, and Green, for instance, for the gastro part. Their intro's could state the various positions that they have held, there accomplishments, etc., but very briefly.
Then there's that neuro guy with the long name that Peg found for me the other day.
It would be nice if we could have a really good list of the BEST sites for related diseases as so many seem to have the other AI things.
Guess what I'm thinking is that there might need to be a "scientific" discussion room for those who like to speculate which would naturally refer to all kinds of research from the net, but there also needs to be a "controlled" list up closer to the front which would only contain the most pertinent information, and which would be maintined and updated by the moderators, perhaps with Polly's oversight, for instance.
Do you suppose that you could get Ty to do a little write up on AI disease/s, including Type I diabetes?
Maybe he could even get his boss lady to do it -- isn't she supposed to be a biggie in the insulin dependent diabetes research?
Perhaps Dr. Fasano would like to keep us up to date on Zonulin research and related GI topics, etc.
Wow, wish I wasn't so sleepy. Hope this makes a little sense.
Yours, Luce
All great ideas!
Luce, I will try to get something about research from the horse's mouths from Drs. Fine and Fasano. Can you get something from Dr. Green?
Anyone else know of new research we should include?
OK, I will start to draw up an introduction. Does anyone want to preview it and comment before I post it here for comments? Let me know.
Please keep in mind that whatever I post will be an early DRAFT. Anything can be changed.
Love,
Polly
Luce, I will try to get something about research from the horse's mouths from Drs. Fine and Fasano. Can you get something from Dr. Green?
Anyone else know of new research we should include?
OK, I will start to draw up an introduction. Does anyone want to preview it and comment before I post it here for comments? Let me know.
Please keep in mind that whatever I post will be an early DRAFT. Anything can be changed.
Love,
Polly
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moremuscle
- Rockhopper Penguin
- Posts: 706
- Joined: Wed May 25, 2005 6:16 am
- Location: South Carolina
Polly,
I am looking forward to seeing your early draft. You are welcome to send it in an email but if you don't I will read it here.
Love,
Karen
Lucy.
I think your ideas are interesting. I am certainly in favor of getting some scientific references written up. It would be great to get something directly from the horse's mouth like Polly suggested. Is Dr. Greene the Celiac specialist in Atlanta? Or who is she/he? I would love to see something from the doctors in Italy that are working with stool testing. Anyone speak Italian? Tessa?
I am looking forward to seeing your early draft. You are welcome to send it in an email but if you don't I will read it here.
Love,
Karen
Lucy.
I think your ideas are interesting. I am certainly in favor of getting some scientific references written up. It would be great to get something directly from the horse's mouth like Polly suggested. Is Dr. Greene the Celiac specialist in Atlanta? Or who is she/he? I would love to see something from the doctors in Italy that are working with stool testing. Anyone speak Italian? Tessa?
Will send on Monday...
Sorry Polly - the doc is at work so it'll have to wait until Monday.
Dang, that TT gal took me gold star!
Dang, that TT gal took me gold star!
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TendrTummy
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