PLEASE READ! Breach?!

[Guest guest]

Ali and I were playing on Google this morning when we discovered an article on Hepatitismag.com. In this article, as you will read if you scroll down, are the names of several of our group members, including myself. The things they have me quoted as saying were NEVER said to a writer, they were written in emails to this group. I'm very concerned about this -- if this information can be extracted from here, and printed, then everything that is being said in this group can be as well. Did any of you that are quoted in this article, actually speak with a journalist or approve the printed of these statements? I know I did not. I just thought I should bring this to someone's attention.

This is the portion of the article where our members are quoted:

Improving the quality of life

So with no real known medication and a costly liver transplant being the best option for those with PSC, what other things can those with the disease do to help improve the quality of their life?

According to Dr. Lindor, there are only a few things they suggest the majority of patients with PSC do. "We recommend they don’t drink excess alcohol, and we ask them to be vaccinated for hepatitis A and B if they have not," he says. "And that’s about it–we don’t really tell them there are a lot of medicines they can’t take. It all depends on the stage at which these patients are. We usually don’t make any lifestyle modification recommendations other than not drinking excess alcohol and getting the hepatitis A and B vaccines."

For Darin J. Pittman of Cypress, Texas, who was officially diagnosed with PSC three years ago, staying on a low-fat, low-protein and high-carbohydrate/sugar diet makes a difference for him in his quality of life. "Although you need protein to maintain strength, too much will overtax the kidneys," he says. "High-fat content diets make most people itch, especially animal fat. Due to increased blood pressure or portal hypertension, excess fat would not be healthy for already weak veins." And the high level of carbs, says Pittman, helps to keep energy levels high. "A high-carb diet is recommended, because the liver cannot synthesize sugars and convert stored sugars and fat into energy. Maintaining a high energy diet can help maintain energy levels and help control the shakes."

In dealing with the itching associated with PSC, Cindy Baudoux-Northrup of Midland, Mich., visits tanning booths as a form of light therapy. "I use light therapy–tanning booths–as a way for the body to break down the bile salts deposited under the skin’s surface that agitate the nerve endings and cause itching," she says. "Just as a baby has jaundice and is given UV light, I use the same principle to take care of the bile that has overflowed into the blood system."

Mike Lathrop of Houston, Texas, has found a few things that help him handle his PSC. "I treat itching with lotions, and fatigue is helped in my case by barley greens," he explains. "I take things like carbicula and artichokes, which are good for the liver. I watch what I eat and I pace myself, keeping physical activity low-key."

And for others, just keeping a positive mental attitude does wonders in improving their quality of life. This is the case for Scherder of Bowling Green, Mo., who has been living with PSC for 20 years. "Keep a positive attitude and remember that every person is different," she advises. "I was told at age 20 that within three to five years I would need a transplant or I would not survive, and for many that has been the case. However, there are even more patients who have survived long past that without a transplant."

The future of PSC

While those with PSC are doing all they can to improve their quality of life, many are concerned about the lack of knowledge and research currently being done. "There does not seem to be any research at all going on into ways to cure the disease," says Edith Pearson of Ontario, Canada, whose husband Dave was diagnosed with PSC in 1984. "We are always being told there are not enough people with the disease to do a proper study." The one thing that Pearson is very interested in finding an answer to is whether or not PSC has anything to do with genetics. "It would be nice to know if this can be passed on through the family, but no one has ever given us an answer."

Barbara, who lives near Oxford in the United Kingdom and was diagnosed with PSC in 1988, also feels there might be a genetic link for those who acquire PSC. "Doubtful, but genetic therapy may prevent its happening in someone who is genetically susceptible," she says.

Whether the cure for PSC lies in genetics or just more research, Dr. Rossaro believes that eventually there will be a cure for the disease. "We are always working to find a cure for diseases, so I’m sure there will be one someday, maybe even prevention if we find out what causes it," he says. "There is also the strong association with inflammatory bowel disease, so maybe if we’re able to treat and cure that, this liver disease will disappear."

[Guest guest]

Dave,

The first thing I did was send an email to the magazine and asked them where the information came from. I'm waiting to hear back from them. I'll let the group know if I get a response.

I just really hate the thought of our more personal matters, including details about our children, etc., being extracted from this site and printed or posted elsewhere. I'm a bit unnerved.

Thanks for the feedback.

[Guest guest]

,

I haven't yet, but I'm pretty determined to get some answers. The most disturbing part is that the quote that's presented in this magazine is a post I sent to this group. I remember sending it! You know what that means, as do we all. The more I think about the unscrupulous act-someone pretending to be a PSC patient/caretaker-or the breach by a genuine member, the more upset I get. This is a place where we all come to discuss real (personal) issues relating to PSC and count on our members to be ethical regarding the information placed here. If it's no longer "safe" -- where we can no longer count on other's discretion -- it will change things.

I am a true child advocate and I hate to think that the person responsible for this would share personal information about one of the children in this group and compromise their safety. There are all types of freaks out there and making detailed information about a sick child can certainly be a serious issue. I used to work with the Division of Family Services, and with the Division of Youth Services...I know first hand that these situations can have a less than good ending.

I hope it becomes important to this group as a whole to discover how this happened. I am not concerned about the content of my "quote", I am simply concerned about someone betraying the trust of the group.

(MO)

[Guest guest]

Penny,

First, I'm going to say, since we lack tone and inflection in emails, that I am not ranting (or even upset) by what you wrote so if it sounds that way, I apologize. You stated that you understand our concerns, you just pointed out the nature of an Internet website -- I understand.

You are right...it's a public forum, however, everyone must be approved to become a member. They are to be either a patient or caretaker/family member to join. Then, there is the understanding that the issues raised here are sensitive. Yes, we put information on here that we know others can see, but to copy and paste these things as quotes without permission is totally unacceptable. My issue isn't that someone read these things, it's that they published them in an article for the entire world to see without knowing that the authors of these statements were OK with it. That's not ethical and I'm pretty sure the person cutting and pasting is well aware of that fact. I would like to know that what is posted here isn't going to end up in another article somewhere. The next time someone steals our posts it may not be so harmless. I hope we can keep this a safe place to chat.

[Guest guest]

Several of our members wrote and gave their approval for their quotes to be used (I think it was a young man.)

This is the key...approval. I was never consulted.

Mel-

[Guest guest]

Hi ;

This is a bit disturbing. The author of the article is " C.E. Pelc " .

He/she does not seem to be a member of the group (at least using this

name), but seems to be a regular contributor to Hepatitis magazine. You

might consider contacting Hepatitis magazine and letting them know that

this author quoted you without your consent, and asking for an

explanation!

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

-As you and everyone has every right to be. Have you tried doing a google search on the author to see if you can find some contact information? Just a thought.I hope you get an answer from the magazine as well.

On 2/14/07, MO425@... <MO425@...

> wrote:

I just really hate the thought of our more personal matters, including details about our children, etc., being extracted from this site and printed or posted elsewhere. I'm a bit unnerved.

Thanks for the feedback.

[Guest guest]

I am as concerned as all of you that this has occurred and it

certainly merits serious attention. In the past, many of the original

members strongly suggested that no one post addresses, phone numbers

and truly personal information since it is all ripe for abuse. We

have had some issues with members using information in ways that most

of us do not appreciate. I'm dancing around the issue, I know. This

is a public forum and who knows who is lurking ....... employers,

doctors, neighbors????

The success of this group depends on candor AND thoughtfulness. Those

are hard to balance.

Penny

[Guest guest]

MO425@... wrote:

>

>

> Ali and I were playing on Google this morning when we discovered an

> article on Hepatitismag.com. In this article, as you will read if you

> scroll down, are the names of several of our group members, including

> myself. The things they have me quoted as saying were NEVER said to a

> writer, they were written in emails to this group. I'm very concerned

> about this -- if this information can be extracted from here, and

> printed, then everything that is being said in this group can be as

> well.

One point to note -- On their website, just below the content of this

article, is a link to their Privacy Policy which says:

" At Hepatitis magazine, we are committed to protecting your privacy.

This means that we will not distribute, sell or rent your name or

personal information about you to any third party without your

permission. We may, however, share non-personal, non-individual

information with our marketing partners for research purposes only. "

I'll be very interested in seeing what reply you get, .

Take care,

Carolyn B. in SC

[Guest guest]

Speaking

for Darin Pittman (Hi Darin!) – I know he consented to an article in Hep

magazine several years ago, (you’ll note the article says he was

dx 3 years ago- it’s been much longer than that, in fact he received his

tx at least 2/3 years ago) many others in this group also gave their permission

for their quotes to be used in that magazine. Every once and a while someone finds bits

and pieces of it on line and throws a fit, but it’s an old, old article. The article mentioned doesn’t

say anything bad or too personal, in fact it would be very helpful to someone

who read it.

You’ll also note

that the writer was quoting Dr Lindor, he’s been a speaker at one of our

conferences hasn’t he, and probably spoke or heard from one (or several

of you) there.

Also, some time back a

relative or friend of a group member had asked our group for quotes so they

could write an article for their school newspaper. Several of our members wrote and gave

their approval for their quotes to be used (I think it was a young man.) I seem to remember another someone who

was writing a paper for a medical publication too, then there was someone’s

college dissertation. There have

been many people who asked for and received approval for quotes.

Two things to remember

– ’s newsletters (and the PSC Partners web site) are public (so

much so that we love it when people read them). Second, athan has set up a reminder

that is posted monthly and it clearly states, don’t say anything here - you

don’t want said in public.

Finally, ya can’t

have it both ways – you can’t remain completely private and increase

our group size at the same time. We

want to find people who need our help, we want to reach out to them and bring

them to us. We want the world to

know we are here! Good PR –

no matter the source can only help us to find a cure. I wish more articles were written, I

wish more of us were quoted in any source.

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

_,___

[Guest guest]

I spoke with a journalist. Apparently the use of remarks made in a

public forum like this group is fair game. If quotes are innaccurate,

that's another matter. It doesn't make me like it any more than I did

when I read the first post.

Penny

[Guest guest]

prweller2001 wrote:

>

> I spoke with a journalist. Apparently the use of remarks made in a

> public forum like this group is fair game. If quotes are innaccurate,

> that's another matter. It doesn't make me like it any more than I did

> when I read the first post.

In long years past, I've done reporting for 2 newspapers and have

several published articles (in small magazines) to my credit, and I

would never consider quoting someone without their specific consent.

The part that bothers me most on this is having full name and home town

published. With the craziness that goes on in the world today, I would

just not want my full name and town published, particularly in a

magazine that's distributed free to prisons! There are just too many

wackos out there. JMHO.

Take care,

Carolyn B. in SC

[Guest guest]

- I spoke with a journalist. Apparently the use of remarks made in a

> public forum like this group is fair game.

Wearing my career journalist hat (it's my day job) -- use of online

communications is increasing, but still considered lazy at best, and

unethical at worst.

There are no laws against it, but no editor with any self-respect would

allow a reporter to troll for comments, especially from a members-only

archival site (which I believe we are).

It is considered fair game to use boards (and blogs) for ideas, but the

journalistic standard is then to contact the speaker and get new quotes.

One exception would be if the story itself was on how people

communicate on the boards. But in that case, people would only be

identified with their screen names.

OK, back to my real job as a mom. And a happy one -- Q presented me a

hand-made valentine that said " I love you with all my heart. "

Pam

(mom to Quantell, 16, dx 1996, tx 2001, dx recurrence with AIH overlap

2006)

[Guest guest]

Just a couple quick points about this issue:

1. If the quotes were indeed used without permission, then it was poor

journalistic practice, but probably not illegal. If you say something

in public, then others have the right to report what you said, and (by

my understanding) groups like this are considered public. If on the

other hand someone had tapped your phone or intercepted *private* emails

it would be illegal.

2. This issue underscores what I have said previously: If you would be

uncomfortable with something you post here being seen by the world at

large, then don't post it here! We moderators do our best to keep

things private, but the fact is that it's extremely easy to become a

member by posing as a patient or caregiver. We have over a thousand

members, and I'd be willing to bet a large sum of money that not all of

them are who they claim to be. If this makes you uneasy, you can always

post using a pseudonym, and refrain from posting personally identifiable

info.

I hope this doesn't make people hesitate to post to the group, but I

also hope that it helps people to realize that if they are concerned

about preserving their privacy it is their responsibility to take steps

to do that.

athan

[Guest guest]

> 1. If the quotes were indeed used without permission, then it was

poor journalistic practice, but probably not illegal.

I read the article posted, and I'm not entirely sure about

this. The article really makes it look like she interviewed people

for her article - which she didn't - and who knows how much she was

paid to write it. Meanwhile, she did not even tell the interviewees

that an interview was happening, let alone get their permission to

identify them by first name, last name and home town in her

commercial venture. You know those articles where they say " so and

so didn't want to be named " and then give them a pseudonym or

something? I'm not sure if that's motivated by " journalistic

practice " or " fear of invasion of privacy lawsuit " - either way,

though, I think it's a clear violation of the trust of the people in

this forum.

>If you say something in public, then others have the right to report

what you said, and (by my understanding) groups like this are

considered public.

I'm not sure of this, either. Didn't we all have to apply to become

a member of the group? What are the membership standards? Is there

any way we change them to give all members a clear contract-like

understanding of the expectation of privacy?

> 2. This issue underscores what I have said previously: If you

would be uncomfortable with something you post here being seen by

the world at large, then don't post it here!

I think you guys do a terrific job, and there certainly is no way for

you to find out if someone is " posing " as a patient or caregiver to

become part of the group - but i'm not sure there's absolutely

nothing we can do to increase protection of members' privacy. I

haven't looked into this specifically, but possibly even adding

something about privacy to the monthly reminders could be helpful in

preventing flagrant violations of trust like this one. I'd be

willing to look into this if there was interest. tx,

nina

[Guest guest]

nlr_psc wrote:

>>1. If the quotes were indeed used without permission, then it was

>>

>>

>poor journalistic practice, but probably not illegal.

>

>I read the article posted, and I'm not entirely sure about

>this. The article really makes it look like she interviewed people

>for her article - which she didn't - and who knows how much she was

>paid to write it.

>

I don't think this would make it illegal. Freedom of speech has very

broad protections in the US and even downright lying isn't illegal,

unless it can be proved that the lie caused some sort of material harm.

Just implying that you interviewed someone when you actually picked up

the quote from a group, probably wouldn't pass that test.

> You know those articles where they say " so and

>so didn't want to be named " and then give them a pseudonym or

>something? I'm not sure if that's motivated by " journalistic

>practice " or " fear of invasion of privacy lawsuit " - either way,

>though, I think it's a clear violation of the trust of the people in

>this forum.

>

Which is what I meant when I said " poor journalistic practice " . The

reason journalists use confidential sources generally has more to do

with their wish to be able to use the source again. If they betray the

persons identity, then that person probably won't pass them any more

information. Anything said in public is pretty much fair game. If a

journalist is sitting in my church and I stand up and say something to

the people there, they can quote me anywhere they please without

worrying about lawsuits.

>I'm not sure of this, either. Didn't we all have to apply to become

>a member of the group? What are the membership standards? Is there

>any way we change them to give all members a clear contract-like

>understanding of the expectation of privacy?

>

>

Well, we could make all prospective members sign a document stating that

they wouldn't disclose anything they heard here to anyone outside the

group. I'm sure that would cut the number of people joining down very

considerably, and it would probably have to be worded very carefully to

provide any real protection. I'm also not sure that even I would want

to sign such a document. I talk with various friends and relatives

about things that are said here. This group is a helpful, meaningful

part of my life and I wouldn't want to give up the ability to share that

with others.

> adding something about privacy to the monthly reminders could be

> helpful inpreventing flagrant violations of trust like this one.

This is already in the monthly reminders:

" Don't say anything here that you wouldn't say in public. Although

the archive is only available to members, it's very easy to become a

member of the group. We have no way to check out the background of

the people who join the group, so your doctors, friends, relatives,

employer, etc. could possibly be members, or become members and read

anything you post here. (A while back I did a Google search on PSC

and the first hit was an email from me to my mother. It had ended up

posted on the web after she forwarded it to another listserver) "

I suppose we could add something else reminding people not to repeat things said

here, but I

don't know that it would be very effective. If you have suggestions for other

things that

we could add to the reminders let me know.

I guess my feeling is that while I wouldn't mind doing more to protect people's

privacy, I

haven't thought of anything that I could do that would really help. The only

really reliable way

I can see to protect privacy is for those who are worried about it to not give

out any personal

information. I also worry that if I do more stuff try to protect people's

privacy, it will

create a false sense of security, and people won't feel the need to do anything

themselves.

Again, if anyone has other suggestions as to how we can protect our privacy,

either as individuals

or as moderators, let us know and we'll see what we can do.

athan