Re: News Articles & Studies

[Guest guest]

Barb, I always appreciate the work you put into finding the articles and sending them to us. If a subject doesn't look like it applies to me I can always delete it without reading it. Please don't stop sending what you find. Have you voted yet? So far (as of when I voted) 100% of the readers voted to keep it the way it is so maybe there isn't a problem at all. Blessings, Barby-KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995 married 27 years , 5 sons, 2 daughers in law, 1 granddaugher born 6/06 and 2 golden retrievers

[Guest guest]

Barb, I always appreciate the work you put into finding the articles and sending them to us. If a subject doesn't look like it applies to me I can always delete it without reading it. Please don't stop sending what you find. Have you voted yet? So far (as of when I voted) 100% of the readers voted to keep it the way it is so maybe there isn't a problem at all. Blessings, Barby-KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995 married 27 years , 5 sons, 2 daughers in law, 1 granddaugher born 6/06 and 2 golden retrievers

[Guest guest]

This question comes up every couple of years (whether to restrict article

posting in some manner). I believe it is a symptom of how large the group

has become. It's impossible to please everyone, hence the poll to determine

the opinions of the majority.

It's simple to set up a " file added " or " link added " e-mail notification

(just takes a box checked). That way people get an e-mail when a new link

or file is posted - just like the poll did. I admit it takes a little more

work to add a file or link than just send an e-mail.

Please vote your preference (I have mine).

Arne

[Guest guest]

This question comes up every couple of years (whether to restrict article

posting in some manner). I believe it is a symptom of how large the group

has become. It's impossible to please everyone, hence the poll to determine

the opinions of the majority.

It's simple to set up a " file added " or " link added " e-mail notification

(just takes a box checked). That way people get an e-mail when a new link

or file is posted - just like the poll did. I admit it takes a little more

work to add a file or link than just send an e-mail.

Please vote your preference (I have mine).

Arne

[Guest guest]

This question comes up every couple of years (whether to restrict article

posting in some manner). I believe it is a symptom of how large the group

has become. It's impossible to please everyone, hence the poll to determine

the opinions of the majority.

It's simple to set up a " file added " or " link added " e-mail notification

(just takes a box checked). That way people get an e-mail when a new link

or file is posted - just like the poll did. I admit it takes a little more

work to add a file or link than just send an e-mail.

Please vote your preference (I have mine).

Arne

[Guest guest]

Barb Henshaw wrote:

>

> I was completely caught off guard by this & had no idea people were

> upset – no one ever said anything about it. ....

>

> .... I’ve always

> believed knowledge is power,

Hi Barb -- For what it's worth, here's my opinion (and yes, I've already

gone and voted on the poll!): I'm 100% with you ... KNOWLEDGE IS

POWER!!!! To me, that's one of the most important things this group

accomplishes. And, anyone who doesn't want to read an article can

always hit delete! It's just not that tough to do. (And personally, I

was fascinated with the one about the 4 coaches.)

Shunting all articles to the website is, IMHO, a poor choice.

Remembering to go and browse the articles once a day (or week, or month

....) is something which would slip my mind very quickly and after a few

weeks, I would completely forget about looking, and definitely forget

where to look. Now I know that not everyone here is coping with HE, but

for those of us who are .... oy vey!!!!

If my time (or brainpower!) is limited on a given day, I skip the social

stuff and check the articles to see if any are of particular interest to

me. Both news articles and medical articles have been of untold

assistance to us personally, as I take some of them to my dr. for

further discussion.

To me, this group's purpose has always been twofold -- education and

support. I'm all for keeping both parts intact. We are extraordinarily

blessed to have 3 extremely capable researchers in our midst (I'm sure

there are more, but automatically, , Pat & Barb spring to mind).

Heartfelt thanks to each of you!!!

Regards,

Carolyn B. in SC

[Guest guest]

Barb,

I am not upset at all, and I would like it if you keep up the good work. I have found several of your postings very helpful. Not all of them (since I don't have UC), but I do know where the [delete] button is.

Chaim Boermeester

[Guest guest]

Barb,

I am not upset at all, and I would like it if you keep up the good work. I have found several of your postings very helpful. Not all of them (since I don't have UC), but I do know where the [delete] button is.

Chaim Boermeester

[Guest guest]

Barb,

I'm amazed that people should object to your great contribution to this Group. I find your input invaluable and I think I can speak for our members in the UK, most of them silent users, who learn much from the news items and studies you put out.

There's some stuff I don't particularly like on the forum, e.g Off Topic personal messages, things about pets - but I wouldn't dream of having them excluded. There's an easy option - skip the messages you don't want to read!!!

I really value your ability to find all the stuff you send. I hope very much that you continue to do so and not be put off by some objections. All power to your typing fingers!

Ivor

(Chairman, PSC-Support UK)

[Guest guest]

Barb,

I'm amazed that people should object to your great contribution to this Group. I find your input invaluable and I think I can speak for our members in the UK, most of them silent users, who learn much from the news items and studies you put out.

There's some stuff I don't particularly like on the forum, e.g Off Topic personal messages, things about pets - but I wouldn't dream of having them excluded. There's an easy option - skip the messages you don't want to read!!!

I really value your ability to find all the stuff you send. I hope very much that you continue to do so and not be put off by some objections. All power to your typing fingers!

Ivor

(Chairman, PSC-Support UK)

[Guest guest]

Barb (and our other research gods), Please know that, to my knowledge, the majority of us DO appreciate and value all that you send. As was already stated, some of the stuff, of course, does not apply to everyone's situation. (Such as hasn't been dx'd with UC or Crohn's, he'll never taper off prednisone or prograf because of the lung transplant, stuff like that.) But we can delete those things we don't need. The item that was sent a number of months ago regarding the replacement of fish oils for an hour a day of TPN to help babies with damaged livers I have printed and passed out to many families here at the Mc House. There have been a number of articles that have really helped us (the items about Rifampin, the story about the boy who'd had a liver transplant, then was an organ donor after his motorcycle accident, etc,

etc.) PLEASE PLEASE PLEASE don't stop posting these things here. I'm one of many who really appreciates them, and would never have the time to go searching other places to find this information. HUGS!!!!!!!!!! AmiBarb 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 Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

Barb,

Amen to Ivor's comments. I couldn't have phrased it any better. Please keep up your research that benefits us all immensely.

Ricky

Re: News Articles & Studies

Barb,

I'm amazed that people should object to your great contribution to this Group. I find your input invaluable and I think I can speak for our members in the UK, most of them silent users, who learn much from the news items and studies you put out.

I really value your ability to find all the stuff you send. I hope very much that you continue to do so and not be put off by some objections. All power to your typing fingers!

Ivor

(Chairman, PSC-Support UK)

[Guest guest]

Barb - KEEP UP THE GOOD WORK!!! Please dont stop.....your input is

invaluable, as Ivor says the majority of us value your hard work

immensely and appreciate the huge investment in time that you give to

the group.

Best wishes

Kym

UK

[Guest guest]

Barb - KEEP UP THE GOOD WORK!!! Please dont stop.....your input is

invaluable, as Ivor says the majority of us value your hard work

immensely and appreciate the huge investment in time that you give to

the group.

Best wishes

Kym

UK

[Guest guest]

Barb - KEEP UP THE GOOD WORK!!! Please dont stop.....your input is

invaluable, as Ivor says the majority of us value your hard work

immensely and appreciate the huge investment in time that you give to

the group.

Best wishes

Kym

UK

[Guest guest]

Dear Group,

At the risk of pissing someone off I am going to jump in here with my perspective.

We are a unique group of people is this online support group. In fact I would say we are really many unique groups under one banner.

- Firstly, there is the Moms group and their special concerns.

- Then there are the Caregivers who do not have PSC themselves and are trying to gain knowledge for their loved ones.

- Then their are the PSCers who have it but not an aggressive form and are slowly finding their way through.

- Then there are the PSCers who do have an aggressive form of PSC and are quickly moving ahead on their journey to transplant.

- There are the PSCers who have had it so long that CC is an overriding concern.

- Last, but certainly not least, are the transplant folks. A wonderful and scary place to be.

Now we all have different perspectives on PSC and therefore have different needs that need filling. It is impossible for me to really understand how the Moms with PSC kids feel. And although the caregivers are totally empathetic they can in no way know what it is like for their loved ones. It seems to me that this discussion about posting articles is not about people not wanting information - It's about how they choose to get it. I think all of us really appreciate those who take the time to research for us. I know I do. However, for some a little reality goes a long way. For those folks it could be very scary to sign on and see a list of articles referring to the mortality and risk factors of transplant or the frequency of CC in PSCers etc.

So I would say that we need to remember if only some have this concern it is still a concern that needs to be addressed. So why not put all of those great articles in another place? ly I would love it as it would save me the time of always having to put into another place and then loosing it half the time. In any case, I would say remember that all of us are not in the same place and that a little sympathy is needed here - just a different perspective, that's all.

Ok I will stop yakking now.

Love to you all,

Ali

PS - Reality is highly overrated.

[Guest guest]

Dear Group,

At the risk of pissing someone off I am going to jump in here with my perspective.

We are a unique group of people is this online support group. In fact I would say we are really many unique groups under one banner.

- Firstly, there is the Moms group and their special concerns.

- Then there are the Caregivers who do not have PSC themselves and are trying to gain knowledge for their loved ones.

- Then their are the PSCers who have it but not an aggressive form and are slowly finding their way through.

- Then there are the PSCers who do have an aggressive form of PSC and are quickly moving ahead on their journey to transplant.

- There are the PSCers who have had it so long that CC is an overriding concern.

- Last, but certainly not least, are the transplant folks. A wonderful and scary place to be.

Now we all have different perspectives on PSC and therefore have different needs that need filling. It is impossible for me to really understand how the Moms with PSC kids feel. And although the caregivers are totally empathetic they can in no way know what it is like for their loved ones. It seems to me that this discussion about posting articles is not about people not wanting information - It's about how they choose to get it. I think all of us really appreciate those who take the time to research for us. I know I do. However, for some a little reality goes a long way. For those folks it could be very scary to sign on and see a list of articles referring to the mortality and risk factors of transplant or the frequency of CC in PSCers etc.

So I would say that we need to remember if only some have this concern it is still a concern that needs to be addressed. So why not put all of those great articles in another place? ly I would love it as it would save me the time of always having to put into another place and then loosing it half the time. In any case, I would say remember that all of us are not in the same place and that a little sympathy is needed here - just a different perspective, that's all.

Ok I will stop yakking now.

Love to you all,

Ali

PS - Reality is highly overrated.

[Guest guest]

Dear Group,

At the risk of pissing someone off I am going to jump in here with my perspective.

We are a unique group of people is this online support group. In fact I would say we are really many unique groups under one banner.

- Firstly, there is the Moms group and their special concerns.

- Then there are the Caregivers who do not have PSC themselves and are trying to gain knowledge for their loved ones.

- Then their are the PSCers who have it but not an aggressive form and are slowly finding their way through.

- Then there are the PSCers who do have an aggressive form of PSC and are quickly moving ahead on their journey to transplant.

- There are the PSCers who have had it so long that CC is an overriding concern.

- Last, but certainly not least, are the transplant folks. A wonderful and scary place to be.

Now we all have different perspectives on PSC and therefore have different needs that need filling. It is impossible for me to really understand how the Moms with PSC kids feel. And although the caregivers are totally empathetic they can in no way know what it is like for their loved ones. It seems to me that this discussion about posting articles is not about people not wanting information - It's about how they choose to get it. I think all of us really appreciate those who take the time to research for us. I know I do. However, for some a little reality goes a long way. For those folks it could be very scary to sign on and see a list of articles referring to the mortality and risk factors of transplant or the frequency of CC in PSCers etc.

So I would say that we need to remember if only some have this concern it is still a concern that needs to be addressed. So why not put all of those great articles in another place? ly I would love it as it would save me the time of always having to put into another place and then loosing it half the time. In any case, I would say remember that all of us are not in the same place and that a little sympathy is needed here - just a different perspective, that's all.

Ok I will stop yakking now.

Love to you all,

Ali

PS - Reality is highly overrated.

[Guest guest]

Barb-I just got to catching up on the posts and am astonished that people have been upset with the articles that are sent in.Please DO NOT stop with the information. Personally I rarely visit the group web site. I just don't have time to deal with it. I have a delete button and confess I do use it-HOWEVER I love the information that you send in along with all the others. You especially have been and "angel" to me. Please please do not stop! The information you find is very interesting and when I need something, 9 times out of 10 can do a search in the posts and find exactly what I am looking for!What you and everyone here contributes is invaluable! You are VERY MUCH APPRECIATED!-

Access over 1 million songs - Yahoo! Music Unlimited.

[Guest guest]

Barb-I just got to catching up on the posts and am astonished that people have been upset with the articles that are sent in.Please DO NOT stop with the information. Personally I rarely visit the group web site. I just don't have time to deal with it. I have a delete button and confess I do use it-HOWEVER I love the information that you send in along with all the others. You especially have been and "angel" to me. Please please do not stop! The information you find is very interesting and when I need something, 9 times out of 10 can do a search in the posts and find exactly what I am looking for!What you and everyone here contributes is invaluable! You are VERY MUCH APPRECIATED!-

Access over 1 million songs - Yahoo! Music Unlimited.

[Guest guest]

Barb (Dave and others), Keep 'em coming! I personally thrive

on " one-stop shopping " . I get updates, research, humor, specifics,

etc, all here. Maybe I'm clueless as to how a forum such as this

works, and I am puzzled about " inbox flooding " . The way mine is set

up, I come here to read everything -- I get nothing in my personal

e-mail unless someone chooses to e-mail me directly. I greatly

appreciate those that shoot me an e-mail regarding a post of mine,

comment, or anything that they may not especially want to take up

space on the forum. I always get excited to see a personal e-mail

from someone in the group -- it builds personal commonality (is

that a word?) and a semi connection you don't always feel from

reading posts. I strayed into a tangent, but nonetheless, I greatly

value these posted studies & articles and honestly would not stumble

upon these on my own. I'm pretty much a reader right now, and

knowledge seeker. Hopefully one day I will be able to contribute.

Without these posted studies I would remain seeking forever without

ever finding.... If my arms were longer I would reach right down to

the lone star state and pat you square on the back. Hopefully I

will be able to meet you in person in Denver, and I'm positive I

will be in a 'back-patting' mood --- so consider yourself

forewarned. That means you too Dave.

Stuart (Va)

PSC 2001

[Guest guest]

Barb (Dave and others), Keep 'em coming! I personally thrive

on " one-stop shopping " . I get updates, research, humor, specifics,

etc, all here. Maybe I'm clueless as to how a forum such as this

works, and I am puzzled about " inbox flooding " . The way mine is set

up, I come here to read everything -- I get nothing in my personal

e-mail unless someone chooses to e-mail me directly. I greatly

appreciate those that shoot me an e-mail regarding a post of mine,

comment, or anything that they may not especially want to take up

space on the forum. I always get excited to see a personal e-mail

from someone in the group -- it builds personal commonality (is

that a word?) and a semi connection you don't always feel from

reading posts. I strayed into a tangent, but nonetheless, I greatly

value these posted studies & articles and honestly would not stumble

upon these on my own. I'm pretty much a reader right now, and

knowledge seeker. Hopefully one day I will be able to contribute.

Without these posted studies I would remain seeking forever without

ever finding.... If my arms were longer I would reach right down to

the lone star state and pat you square on the back. Hopefully I

will be able to meet you in person in Denver, and I'm positive I

will be in a 'back-patting' mood --- so consider yourself

forewarned. That means you too Dave.

Stuart (Va)

PSC 2001

[Guest guest]

Barb,

I don't post often anymore, but read almost everyday. "knowledge is power" ranks right up there with "whatever it takes" in mho. Tim L

--Tim Long UC / PSC 25+ yrs TX 8/2/02 married 40 yrs, 2 daughters,2, "sons" & 4 grandkids

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[Guest guest]

Barb,

I don't post often anymore, but read almost everyday. "knowledge is power" ranks right up there with "whatever it takes" in mho. Tim L

--Tim Long UC / PSC 25+ yrs TX 8/2/02 married 40 yrs, 2 daughters,2, "sons" & 4 grandkids

-------------- Original message --------------

[Guest guest]

Barb,

I don't post often anymore, but read almost everyday. "knowledge is power" ranks right up there with "whatever it takes" in mho. Tim L

--Tim Long UC / PSC 25+ yrs TX 8/2/02 married 40 yrs, 2 daughters,2, "sons" & 4 grandkids

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