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The following was too big to put in this opening thread. I'll post it right below here:
But she says interesting things and she is an ex-HCV patient. I don't see why people have a problem with her, even if she does work for/have her own a charity. Do we just want a bunch of clones on here? All points of view should be welcome, even those that don't fit into the "do tx at all costs/ as often and as for as long as it takes/accompanied by as many other medications as you like/test every two minutes to see if it's working" mentality. Why do some people feel so strongly about her? I have read her posts and can't see what the fuss is about. Lighten up!
I posted this message on another thread, but I'm pasting it here because this seems to be the latest thread dedicated to Ms. Thanbey:
Allow me to speak as someone who's not seeing the world through the brain fog of treatment:
I'm stunned by the gauntlet that some people have to pass through to be accepted here. A foul-mouthed troublemaker like Ring-a-Ding passes muster, but Thanbey is attacked because of paranoid suspicisons of what her agenda MIGHT be. People have compared her to Hitler and Al Capone, for God's sake!
You know who looks bad in all of this? Not Thanbey, that's for sure. Those of you who have attacked her look petty, paranoid, ungracious and mean-spirited. Her website solicits funds -- SO WHAT! We should be grateful that someone out there is trying to raise money to bring awareness and a cure to this damn disease.
I've read every post she's added to this board over the past week and not one appears to me to be inappropriate. In fact, she continues to be polite (I know, I know -- the hell with good manners) in spite of the appalling rudeness displayed by several of you.
In the six months since I was diagnosed and began visiting this board, I'm amazed at how many fights break out over the dumbest things. One poster called a newbie a "*****" on Christmas Day because she asked the same question too many times! If this is what being on treatment does to people, I think I'll put it off as long as I can.
So go ahead....attack Thanbey all you want. By doing so, you say volumes about YOUR character (or lack thereof) than you do about hers.
Susan
P.S. Just for the record for you super-paranoid types...I don't know Thanbey. Never met her, never saw her website, never contributed to her organization, nor has she paid me to say this.
Allow me to speak as someone who's not seeing the world through the brain fog of treatment:
I'm stunned by the gauntlet that some people have to pass through to be accepted here. A foul-mouthed troublemaker like Ring-a-Ding passes muster, but Thanbey is attacked because of paranoid suspicisons of what her agenda MIGHT be. People have compared her to Hitler and Al Capone, for God's sake!
You know who looks bad in all of this? Not Thanbey, that's for sure. Those of you who have attacked her look petty, paranoid, ungracious and mean-spirited. Her website solicits funds -- SO WHAT! We should be grateful that someone out there is trying to raise money to bring awareness and a cure to this damn disease.
I've read every post she's added to this board over the past week and not one appears to me to be inappropriate. In fact, she continues to be polite (I know, I know -- the hell with good manners) in spite of the appalling rudeness displayed by several of you.
In the six months since I was diagnosed and began visiting this board, I'm amazed at how many fights break out over the dumbest things. One poster called a newbie a "*****" on Christmas Day because she asked the same question too many times! If this is what being on treatment does to people, I think I'll put it off as long as I can.
So go ahead....attack Thanbey all you want. By doing so, you say volumes about YOUR character (or lack thereof) than you do about hers.
Susan
P.S. Just for the record for you super-paranoid types...I don't know Thanbey. Never met her, never saw her website, never contributed to her organization, nor has she paid me to say this.
I feel that anybody has the right to post on this forum. Over the past month or so, there have been some heated debates. There have been unprovoked attacks and name calling. My friend Kimmy, also known as Ringading, was one of those who were attacked and left the forum. The cliche' "out of sight out of mind" is not the case here. Ringading continues to read this forum for support that she so desperately needs. Below, please read an email that I received from Ringading this afternoon. She asked me to post it. And for those that continue to attack her...shame on you.
hey jamie...kiddo
i have been following this debate with great interest as well as sadness. there are about 200 posts in a week involving this women, teresa hanbey, mostly unkind (a women i must say, who has been incredibly tolerant, tasteful and respectful at ALL times.) just when i was contemplating popping back in there (as i am having great difficulty with tx sides, depression on and off, extra medical problems as well as the isolation, 7 injections left to go), i see that things remain similar as to when i left...just the names and people that get assaulted change. this is so disheartening to see.
i have read thanbys posts with interest and welcome the valuable information and contribution she provides. why is it such a concern or threat to some?. i just don't get it. you can not possibly make an informed decision about anything without considering all sides and options. its quite simple really. there does not seem to be assaults on regulars who kindly,as well, as painstakingly take the time to post articles and research and who also kindly continue to answer questions, or on others that also happen to have web sites. why must thanbey be repeatedly assaulted? to what end? it seems that bullying is alive and well and still thrives. although there certainly are times i have missed most everyone and longed to reach out in there, these silly and hurtful fights are what prevent me.
all of this reminds me of a 'grid lock' on a major highway, during rush hour. why is there a 'grid lock' you ask? because a cop has pulled a women over to tell her a tail light is broken, and EVERYBODY seems to have a burning NEED to stop and look, thus holding traffic at an almost complete stand still for what seems like, forever!!!.....'rubber necking syndrome'....i am sure applies here.
love kimmy
hey jamie...kiddo
i have been following this debate with great interest as well as sadness. there are about 200 posts in a week involving this women, teresa hanbey, mostly unkind (a women i must say, who has been incredibly tolerant, tasteful and respectful at ALL times.) just when i was contemplating popping back in there (as i am having great difficulty with tx sides, depression on and off, extra medical problems as well as the isolation, 7 injections left to go), i see that things remain similar as to when i left...just the names and people that get assaulted change. this is so disheartening to see.
i have read thanbys posts with interest and welcome the valuable information and contribution she provides. why is it such a concern or threat to some?. i just don't get it. you can not possibly make an informed decision about anything without considering all sides and options. its quite simple really. there does not seem to be assaults on regulars who kindly,as well, as painstakingly take the time to post articles and research and who also kindly continue to answer questions, or on others that also happen to have web sites. why must thanbey be repeatedly assaulted? to what end? it seems that bullying is alive and well and still thrives. although there certainly are times i have missed most everyone and longed to reach out in there, these silly and hurtful fights are what prevent me.
all of this reminds me of a 'grid lock' on a major highway, during rush hour. why is there a 'grid lock' you ask? because a cop has pulled a women over to tell her a tail light is broken, and EVERYBODY seems to have a burning NEED to stop and look, thus holding traffic at an almost complete stand still for what seems like, forever!!!.....'rubber necking syndrome'....i am sure applies here.
love kimmy
Patient-to-patient, huh? That's the eligibility criteria for posting? So, should we ban Amanda's mom? After all, she's not a patient. In fact, to hell with her....let her find another place to comb for information to help her 14-year-old HCV-infected daughter!
Let's be real. There's a contingent of posters here who would prefer this be a board solely for "patients on treatment - to other patients on treatment."
You talk about Thanbey's "anti-treatment bias". I'd say that's the pot calling the kettle black. Those attacking Thanbey clearly have a "treatment bias."
The truth is, those of you with your "treatment bias" do a bigger diservice to newbies and others who are trying to learn about this disease and weigh all the options.
Susan
Let's be real. There's a contingent of posters here who would prefer this be a board solely for "patients on treatment - to other patients on treatment."
You talk about Thanbey's "anti-treatment bias". I'd say that's the pot calling the kettle black. Those attacking Thanbey clearly have a "treatment bias."
The truth is, those of you with your "treatment bias" do a bigger diservice to newbies and others who are trying to learn about this disease and weigh all the options.
Susan
Encouraging news march 4,2004 if you missed my message about noleen please go back because it also applies here TO this teresa hansby business. focus people SUPPORT GROUP
OK. I guess I've had enough of all this myself and am wondering why I continue to participate here as I have been doing since I first started coming in September, 2002.
For one thing, this has always been a very pro-tx site. It used to be that anyone who posted anything remotely "alternative" was flamed into a burning crisp. This has always been rather difficult for me because I haven't chosen to treat. Even so, I am a patient too. I have a GI, I even go see him regularly. But I have always ended up in a subclass here because I'm not chiming in about my sx or brain fog or what week I'm on. I accept that because I've still found it valuable to get the information that surfaces here periodically and there are times when I am able to help someone else.
But now someone shows up on the board who is knowledgeable and may very well have an anti-tx bias and I see them treated miserably. And I am personally offended by this because she is someone who is presenting information that is useful to me (and should be useful to others). There are several people here who can't see past their own selfish selves to understand that we need all points of view and all the information available. For some reason these people are blind to the fact that the current tx (and western medicine in general) isn't "the" answer, which astounds me, because if it was "the" answer there'd be a 100% cure rate. Until that happens, anyone's a fool who doesn't find out as much as they can and examine this disease and their own health from every angle.
I, for one, would like to see more balance here. I would like to see more tolerance here. I know that tx is very very difficult and so I often refrain from jumping in to these heated discussions but this has gone too far. Being against tx isn't being "negative." The recent insulting comments and inability to leave it be *is* negative and destructive to open communication and the "patient-to-patient comments" that this forum is for.
For one thing, this has always been a very pro-tx site. It used to be that anyone who posted anything remotely "alternative" was flamed into a burning crisp. This has always been rather difficult for me because I haven't chosen to treat. Even so, I am a patient too. I have a GI, I even go see him regularly. But I have always ended up in a subclass here because I'm not chiming in about my sx or brain fog or what week I'm on. I accept that because I've still found it valuable to get the information that surfaces here periodically and there are times when I am able to help someone else.
But now someone shows up on the board who is knowledgeable and may very well have an anti-tx bias and I see them treated miserably. And I am personally offended by this because she is someone who is presenting information that is useful to me (and should be useful to others). There are several people here who can't see past their own selfish selves to understand that we need all points of view and all the information available. For some reason these people are blind to the fact that the current tx (and western medicine in general) isn't "the" answer, which astounds me, because if it was "the" answer there'd be a 100% cure rate. Until that happens, anyone's a fool who doesn't find out as much as they can and examine this disease and their own health from every angle.
I, for one, would like to see more balance here. I would like to see more tolerance here. I know that tx is very very difficult and so I often refrain from jumping in to these heated discussions but this has gone too far. Being against tx isn't being "negative." The recent insulting comments and inability to leave it be *is* negative and destructive to open communication and the "patient-to-patient comments" that this forum is for.
BEAUTIFUL,WELL SAID BRAVO B R A V O,I WOULD FIGHT FOR YOUR RIGHT FOR AN OPINION TILL THE DEATH.......DELORES
The forum says "patient to patient", however it is and should be open to all that want to learn about hep c. We have lots that have it on this forum, lots of spouses that do the research, mothers,daughters, sons, grandmothers etc. Jamie (jg2002) comes here and unfortunately her brother died of this disease. If we only would stop and listen...We can learn so much from each other. This is a hard road for all of us and we need to be so compassionate to others and considerate on this board. Lets face it...if we didn't have this board to come to...it would be hard to deal with. Even if someone just wanted to come and learn more about the disease...they are welcome. This should be OPEN forum and not CLOSED and honestly lately some of the ideas here have been CLOSED MINDED. If the ones that don't like certain postings or for that matter people...would just skip over or ignore,,,this wouldn't keep cropping up. I certaintly don't think anyone should leave because of 1 person or even a few as look at all the people that you come here to talk to. Tallblonde....for one...I hate to see you leave as you have every right as anyone to be here. For this those are so very interested in Thanbey instead of Hep C...I have a link I can pass to you for a website of hers and will be glad to do so.
Thanks, Delores. I really appreciate you saying that. I'm usually so hesitant about sticking my neck out here. :)
I, for one, think that YOU are the divisive force on this forum Everyone has been extremely polite and accepting of the attacks you have launched on Thanby. I've been on this site for about two years now and finished tx last September, but continue to check in fairly regularly to see what is happening to my "family". That makes me an ex-patient. So am I no longer allowed to post either? Many of the folks here, inclucing Indiana, britgirl, tallblonde, jg2001, greatbird, and others have asked for a cessation of the hostilites toward Ms Hanby, but you seem unable to let her post in peace. She has never posted even the smallest negative word about you or her other detractors. You are single-handedly driving a wedge between the folks with HCV and this forum. I respectfully request that you cease your crusade against this woman who has never been anything but civil and let everyone make up his or her own mind about the extremely personal decision to treat.
Will all of this stop if I holler "calf rope"? so we can get back to the business of helping and providing support for each other.
Well put. Along with Tallblonde, Honey, Reposyco (love that name)and yes, Ringading, have said, we must look at all issues relating to this disease. I was diagnosed in Nov. 2003 with HCV. I am a 1b...however, through the testing, it has been determined that my body has fought off this on its own. Why do I have to continue to test? Is there a chance that it may become active? If it does, will I treat? What alternate treatments are being explored that maybe available in the near future? How will my body hold up against the current treatments considering my current medical problems?...whatever. I have found that most posts can be beneficial or hold some substantive information if read with an open mind. If it doesn't pertain, then let it go. There can be a softer resolve to this controversy.
Jamie
Jamie
So if Thanbey removes the link to her website when she posts in the future, everything's cool with you and TnHepGuy? Okay, point taken. All THIS over a little link to a website. Wow.
Folks Step back and take a long look at what everyone is saying. I have been comming to this board for many years and have never seen this. Were here for a greater goal.
God Bless,
Tony
God Bless,
Tony
Free speech is something we all value.
People can post what they like but if we're debating some scientific issue or aspect of treatment people should be able to ask questions too right? If the person asked doesn't know the answer just say so. Easy.
I'm not a doctor, not an expect on HCV, etc. I am learning and want to learn.
Teresa presented herself as "the final word" on whether peginterferons are antifibrotics (and I do not believe the HALT-C or COPILOT studies are completed) and contradited Dr. Dieterich on whether the peginterferon molecule crosses the blood brain barrier. I sided with the doctor and simply asked for something that would prove him wrong: Teresa came up empty handed. That is what started ALL of this.
Then it came out that a few other members here knew her from other websites.
Of course, charities need money. Is this the place to solicit? I don't know. I am here to learn, support, get support and have some fun while doing it.
People can post what they like but if we're debating some scientific issue or aspect of treatment people should be able to ask questions too right? If the person asked doesn't know the answer just say so. Easy.
I'm not a doctor, not an expect on HCV, etc. I am learning and want to learn.
Teresa presented herself as "the final word" on whether peginterferons are antifibrotics (and I do not believe the HALT-C or COPILOT studies are completed) and contradited Dr. Dieterich on whether the peginterferon molecule crosses the blood brain barrier. I sided with the doctor and simply asked for something that would prove him wrong: Teresa came up empty handed. That is what started ALL of this.
Then it came out that a few other members here knew her from other websites.
Of course, charities need money. Is this the place to solicit? I don't know. I am here to learn, support, get support and have some fun while doing it.
I agree with you on that one.
And, please tell me if I am wrong but when we both pointed out studies showing peginterferons do act as antifibrotics -- they can and do reverse firbosis -- Teresa attempted to refute that fact.
And, please tell me if I am wrong but when we both pointed out studies showing peginterferons do act as antifibrotics -- they can and do reverse firbosis -- Teresa attempted to refute that fact.
How do they do this....(((((HUGS)))) or is it {{{HUGS}}}}... or [[[HUGS]]]...who knows! Ya get my point!
Jamie
Jamie
I am amazed. This thread goes on and on about the pros and cons of Dr. Henby. I have no dog in that fight and do not intend to get into that mess. What I am amazed about is the post just previous to this where Breslinhoops was asking for advice and the only person kind enough to respond to him was Galen. Everybody else was too busy stating their position on the Henby issue. Everybody says this is a patient to patient forum and here Breslinhoops is asking for help and nobody jumped in to help except Galen. Shame, shame, shame. I'll continue to review the posts on this board, but I'm quickly leaning to taking Kimmy's (Ringading) approach. I never contributed that much, so I know I won't be missed, but I feel very bad for the newbies who come here for help and all they read about is bickering about whether or not to consider all opinions.
Hey Dr. Scott,,,,Ok...I understood everything you have said today, yesterday, day before. You got my attention. I know you are totally pissed about her no reply to your blood brain barrier. Its been eating away at ya and I hear ya but...What do you want us to do with this? I mean seriously...what do you want to see happen here? Her leaving the board totally? Will that make you happy? You then say...then it comes out that a few know her from other boards??? I said I have been to her website but know her...NO I never knew her but saw some of her postings elsewhere. I only recognized her name when she first posted here. So...actually didn't know or understand where you were going with that comment??? As far as the donations..are you donating? Don't worry about it..if people want to donate they will. Her links certaintly arent going to twist my arms or mind...only if I allow it.
I didn't mean you. I meant the people who posted derogatory comments directed toward Teresa who knew her from other message boards.
Actually, I believe mofosr echoes my sentiments.
All I wanted was an answer. I am not out to banish anyone to Siberia.
Actually, I believe mofosr echoes my sentiments.
All I wanted was an answer. I am not out to banish anyone to Siberia.
mofosr and tnhepguy,
Thank you for such great explanations of this issue. Here's my pathetic attempt....
When a newbie goes online to get information about their just-diagnosed hcv, there's a good chance that they'll end up on one of the hep boards, like medhelp.org or healthboards.com. If they were to read only one-sided descriptions of failed treatments, explanations of why the current treatments won't work, and the horrible, debilitating disorders that will definitely occur because of having been on tx. AND when any and all tx-positive input is BANNED, then that totally skews the reality. If you go to the healthboards site, where Thanbey is the queen bee that everyone comes to when they're desperate for information and she completely discourages them from attempting tx, and when anyone willing to refute that information isn't allowed to post and you have a small cult following of ThanFan dittoheads, then you would have a completely one-sided, negative view of the tx reality. Phew.
There's also the "posing as a doctor" component to this whole thing that bothers me, and the fundraising stuff too. I apologize for my negativity on this matter, but I've gotten most info about hcv from the web, and am so happy that I found all the knowledgable, helpful, and generous people here at medhelp rather than continuing to read the **** on other boards.
A great weekend to you all,
newb (now doneB!)
Thank you for such great explanations of this issue. Here's my pathetic attempt....
When a newbie goes online to get information about their just-diagnosed hcv, there's a good chance that they'll end up on one of the hep boards, like medhelp.org or healthboards.com. If they were to read only one-sided descriptions of failed treatments, explanations of why the current treatments won't work, and the horrible, debilitating disorders that will definitely occur because of having been on tx. AND when any and all tx-positive input is BANNED, then that totally skews the reality. If you go to the healthboards site, where Thanbey is the queen bee that everyone comes to when they're desperate for information and she completely discourages them from attempting tx, and when anyone willing to refute that information isn't allowed to post and you have a small cult following of ThanFan dittoheads, then you would have a completely one-sided, negative view of the tx reality. Phew.
There's also the "posing as a doctor" component to this whole thing that bothers me, and the fundraising stuff too. I apologize for my negativity on this matter, but I've gotten most info about hcv from the web, and am so happy that I found all the knowledgable, helpful, and generous people here at medhelp rather than continuing to read the **** on other boards.
A great weekend to you all,
newb (now doneB!)
Doesn't the posing as a DOCTOR bother anyone?
Surely, she looked at the site as she advertised it in her long-winded "look at me" listing of her reasons for sainthood.
What does it say about the site if they didn't even bother to check out her credentials before they listed her as a doctor?
Surely, she looked at the site as she advertised it in her long-winded "look at me" listing of her reasons for sainthood.
What does it say about the site if they didn't even bother to check out her credentials before they listed her as a doctor?
Yes, it does bother me. I think people on other boards assume she is a doctor, because she always seems to be so knowledgable about hcv, she's always there with answers, and she has the authority of her organization in her signature.
People who are in shock about a recent diagnosis and desperate for information might unwittingly stumble upon someone claiming to be an authority on hep c, that's not. It's important to let other people know the truth and to urge them not believe everything they read.
newb
People who are in shock about a recent diagnosis and desperate for information might unwittingly stumble upon someone claiming to be an authority on hep c, that's not. It's important to let other people know the truth and to urge them not believe everything they read.
newb
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