Re: News Articles & Studies

December 5, 2006

I just caught up on some of the e-mails regarding articles. Barb, I have always been impressed with your resourcefulness in finding these wonderful tidbits. I totally support having them included in the regular support group messages. I get to see things that I otherwise would never come across. It only takes a second to zap an e-mail so I hope you'll continue what you've been doing. I haven't read everyone's emails on this topic so I hope I haven't blabbed on about the wrong thing. I just wanted to be sure that the articles don't stop coming.

Joan

News Articles & Studies

Barb, I don’t think this is about you personally. It’s about the varying needs and interests of our group as a whole. You are one of our most meticulous housekeepers here – your stuff if always well labeled and appropriate to the group’s goals and interests.

Research is obviously an important aspect of the PSC-Support group. On the other hand, our individual needs and interests are variable. This group is getting huge and so when someone doesn’t want to read research or doesn’t want to read humor, the number of posts can seem overwhelming. We have to all remember that we have a DEL key and to use it. As a group, we also need to watch and label our Subject lines more carefully. We are already instructed to use OFF TOPIC when posting things not related to PSC. Why not use RESEARCH to label those posts that are strictly research related? There is so much to be shared and valued within this group. We just need to work together as a team so that all members are respected and valued for their presence here. This goal of this group is not about me versus you. It’s about us. And we need to work to always keep that goal in mind. When the stakes are high, emotions run deep. We need to keep the focus on the goal – US and SUPPORT.

Thanks, Chaim , for voicing your concerns. With 2000 some members, I’m sure there are plenty more who choose not to read all the research. You are not alone. But there are many here who do want to be a part of the research as well. So do your best to delete what you don’t need. And know that we are glad that you are here.

December 5, 2006

I just caught up on some of the e-mails regarding articles. Barb, I have always been impressed with your resourcefulness in finding these wonderful tidbits. I totally support having them included in the regular support group messages. I get to see things that I otherwise would never come across. It only takes a second to zap an e-mail so I hope you'll continue what you've been doing. I haven't read everyone's emails on this topic so I hope I haven't blabbed on about the wrong thing. I just wanted to be sure that the articles don't stop coming.

Joan

News Articles & Studies

Barb, I don’t think this is about you personally. It’s about the varying needs and interests of our group as a whole. You are one of our most meticulous housekeepers here – your stuff if always well labeled and appropriate to the group’s goals and interests.

Research is obviously an important aspect of the PSC-Support group. On the other hand, our individual needs and interests are variable. This group is getting huge and so when someone doesn’t want to read research or doesn’t want to read humor, the number of posts can seem overwhelming. We have to all remember that we have a DEL key and to use it. As a group, we also need to watch and label our Subject lines more carefully. We are already instructed to use OFF TOPIC when posting things not related to PSC. Why not use RESEARCH to label those posts that are strictly research related? There is so much to be shared and valued within this group. We just need to work together as a team so that all members are respected and valued for their presence here. This goal of this group is not about me versus you. It’s about us. And we need to work to always keep that goal in mind. When the stakes are high, emotions run deep. We need to keep the focus on the goal – US and SUPPORT.

Thanks, Chaim , for voicing your concerns. With 2000 some members, I’m sure there are plenty more who choose not to read all the research. You are not alone. But there are many here who do want to be a part of the research as well. So do your best to delete what you don’t need. And know that we are glad that you are here.

December 5, 2006

Ali,

At the risk of ticking more folks off, I

will agree with you on this. I spent 45 minutes today searching for HE

articles on this group and never did find it because the stupid Yahoo thing

timed out and gave error messages and the like. I was so freaking

frustrated on top of being a freaking mess because of what I am going through

with Noah, which I really did not know what to do…. To be honest,

in the last 6 months I have felt less and less comfortable asking questions or

posting much of anything for fear that I will be told that it is somewhere or

has been talked about before that I need to go search it out myself. So I

feel like I am at an impasse here. This illness makes people testy.

I get it. I was testy today regarding Noah. But I think everyone

here has gotten that all the journal research is appreciated and that NO ONE

meant to hurt anyone’s feelings however this discussion got

started. There is more than one way to skin a cat. Change can be

good. I see that as a thing in this situation, AND in the discussions

regarding presenting ideas for fundraising and to the PSC Partners.

I know I have felt shot down, or dismissed

and I am sure that was not the intent. But I wonder if we should not have

a place to store all the ideas or a person to track them until we can get together

annually for discussions about which to pursue. People who bring things

up are well-intended, but might not be able to take them to completion.

They might be able to find, but not finish…everyone has different

gifts. I would hate for anyone to feel the foundation does not want their

input, which is sort of how I have felt about many things.

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

December 5, 2006

PLEASE keep sending us this information, if we aren't educated we can't make sure our doc's are doing the best for us. I appreciate this information and so does my doc, I take it to him and it benefits his other psc patients!Barb Henshaw wrote: >>>Some members prefer NOT to receive news articles (overwhelming,

too much information, disheartening, etc.) I was completely caught off guard by this & had no idea people were upset – no one ever said anything about it. Have to assume you’re talking about me, as very few people send stuff in. In fact, off hand, I can only name 3 of us, Dutch Pat, & myself that do it on a regular basis. I do try to only send news articles that in some way mention PSC, transplants or hospitals. I do however, send in studies I think are important. Not sure what all this means……. No more news items from UNOS? Medical studies would/could only be posted on ’s site and not here? No newspaper articles? Would that mean that “the group” would only be allowed to “talk” and that any other information sharing would only be allowed in a file? How many people would remember (and have the time) to go to the home page, log in & read the files section? I’ve always believed knowledge is power, but if people are unhappy …… My mind is running wild…...was someone upset over the 4 coaches with PSC article I sent in last week? Please let me know why you are upset, maybe working together, we can correct the problem. Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

Any questions? Get answers on any topic at Yahoo! Answers. Try it now.

December 5, 2006

PLEASE keep sending us this information, if we aren't educated we can't make sure our doc's are doing the best for us. I appreciate this information and so does my doc, I take it to him and it benefits his other psc patients!Barb Henshaw wrote: >>>Some members prefer NOT to receive news articles (overwhelming,

too much information, disheartening, etc.) I was completely caught off guard by this & had no idea people were upset – no one ever said anything about it. Have to assume you’re talking about me, as very few people send stuff in. In fact, off hand, I can only name 3 of us, Dutch Pat, & myself that do it on a regular basis. I do try to only send news articles that in some way mention PSC, transplants or hospitals. I do however, send in studies I think are important. Not sure what all this means……. No more news items from UNOS? Medical studies would/could only be posted on ’s site and not here? No newspaper articles? Would that mean that “the group” would only be allowed to “talk” and that any other information sharing would only be allowed in a file? How many people would remember (and have the time) to go to the home page, log in & read the files section? I’ve always believed knowledge is power, but if people are unhappy …… My mind is running wild…...was someone upset over the 4 coaches with PSC article I sent in last week? Please let me know why you are upset, maybe working together, we can correct the problem. Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

Any questions? Get answers on any topic at Yahoo! Answers. Try it now.

December 6, 2006

As far as I know, no one is upset about articles being posted. I think

Arne was trying to find some information about how best to keep the

group running according to the wishes of the members. As far as I know

there haven't been any complaints about it. As moderators we don't want

to only react to problems, but to know enough about the group to be able

to head them off before they crop up. Unfortunately, it seems that the

assumption here has been that if a moderator posted about something

there must be a problem. Please don't make this assumption!

Based on the responses so far to the poll, it looks like the

overwhelming majority support posting articles directly to the group. I

don't think Barb or any of the other article posters need to feel like

they've been attacked or put down in any way.

For my input to the discussion, I don't have a problem with articles

posted to the group as long as they are related to PSC, are accurate,

and are legal to post here (check the copyright restrictions.. if the

material is copyrighted you may need to get permission to post here,

just post a link, or just post small quotes from the article and

summarize the rest.) then I don't have any problem with them. And no, I

haven't noticed any articles that are " inappropriate " under the

criteria above, so no one needs to feel like I'm pointing fingers at them!

Thanks to everyone for your input!

athan

December 6, 2006