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Cystic Fibrosis is a Business!!!!!!!!
- Thread starter imanov
- Start date
H
hillthekhore
Guest
@entropy
I totally disagree. If he's a troll, taking his case seriously is what he wants us to do. What trolls generally want is for people who don't get the joke to play along and spend emotional energy trying to inform them when, in fact, the troll has already abandoned the thread.
If he's not a troll, well, then we need to acknowledge the fact that someone whose child has been diagnosed with CF who won't acknowledge it is going to do damage to his child and do something about it. So yes, I'm being a jackass, but I'm not being JUST a jackass. I'm being a helpful jackass.
I totally disagree. If he's a troll, taking his case seriously is what he wants us to do. What trolls generally want is for people who don't get the joke to play along and spend emotional energy trying to inform them when, in fact, the troll has already abandoned the thread.
If he's not a troll, well, then we need to acknowledge the fact that someone whose child has been diagnosed with CF who won't acknowledge it is going to do damage to his child and do something about it. So yes, I'm being a jackass, but I'm not being JUST a jackass. I'm being a helpful jackass.
H
hillthekhore
Guest
@entropy
I totally disagree. If he's a troll, taking his case seriously is what he wants us to do. What trolls generally want is for people who don't get the joke to play along and spend emotional energy trying to inform them when, in fact, the troll has already abandoned the thread.
If he's not a troll, well, then we need to acknowledge the fact that someone whose child has been diagnosed with CF who won't acknowledge it is going to do damage to his child and do something about it. So yes, I'm being a jackass, but I'm not being JUST a jackass. I'm being a helpful jackass.
I totally disagree. If he's a troll, taking his case seriously is what he wants us to do. What trolls generally want is for people who don't get the joke to play along and spend emotional energy trying to inform them when, in fact, the troll has already abandoned the thread.
If he's not a troll, well, then we need to acknowledge the fact that someone whose child has been diagnosed with CF who won't acknowledge it is going to do damage to his child and do something about it. So yes, I'm being a jackass, but I'm not being JUST a jackass. I'm being a helpful jackass.
H
hillthekhore
Guest
@entropy
<br />
<br />I totally disagree. If he's a troll, taking his case seriously is what he wants us to do. What trolls generally want is for people who don't get the joke to play along and spend emotional energy trying to inform them when, in fact, the troll has already abandoned the thread.
<br />
<br />If he's not a troll, well, then we need to acknowledge the fact that someone whose child has been diagnosed with CF who won't acknowledge it is going to do damage to his child and do something about it. So yes, I'm being a jackass, but I'm not being JUST a jackass. I'm being a helpful jackass.
<br />
<br />I totally disagree. If he's a troll, taking his case seriously is what he wants us to do. What trolls generally want is for people who don't get the joke to play along and spend emotional energy trying to inform them when, in fact, the troll has already abandoned the thread.
<br />
<br />If he's not a troll, well, then we need to acknowledge the fact that someone whose child has been diagnosed with CF who won't acknowledge it is going to do damage to his child and do something about it. So yes, I'm being a jackass, but I'm not being JUST a jackass. I'm being a helpful jackass.
I do agree. Way too many people get their knickers in a twist and go on a power trip without knowing the entire story.
Let's say this person is in denial, being attacked is just going to fuel that. If he is a troll trying to stir crap, you guys played into it beautifully.
I do notice a pattern here, though. Anytime a post ruffles a few feathers, you guys tend to rally and attack. If I were him, and this is in fact a sincere post, I would be livid at the response it has received. Well done.
Let's say this person is in denial, being attacked is just going to fuel that. If he is a troll trying to stir crap, you guys played into it beautifully.
I do notice a pattern here, though. Anytime a post ruffles a few feathers, you guys tend to rally and attack. If I were him, and this is in fact a sincere post, I would be livid at the response it has received. Well done.
I do agree. Way too many people get their knickers in a twist and go on a power trip without knowing the entire story.
Let's say this person is in denial, being attacked is just going to fuel that. If he is a troll trying to stir crap, you guys played into it beautifully.
I do notice a pattern here, though. Anytime a post ruffles a few feathers, you guys tend to rally and attack. If I were him, and this is in fact a sincere post, I would be livid at the response it has received. Well done.
Let's say this person is in denial, being attacked is just going to fuel that. If he is a troll trying to stir crap, you guys played into it beautifully.
I do notice a pattern here, though. Anytime a post ruffles a few feathers, you guys tend to rally and attack. If I were him, and this is in fact a sincere post, I would be livid at the response it has received. Well done.
I do agree. Way too many people get their knickers in a twist and go on a power trip without knowing the entire story.
<br />
<br />Let's say this person is in denial, being attacked is just going to fuel that. If he is a troll trying to stir crap, you guys played into it beautifully.
<br />
<br />I do notice a pattern here, though. Anytime a post ruffles a few feathers, you guys tend to rally and attack. If I were him, and this is in fact a sincere post, I would be livid at the response it has received. Well done.
<br />
<br />Let's say this person is in denial, being attacked is just going to fuel that. If he is a troll trying to stir crap, you guys played into it beautifully.
<br />
<br />I do notice a pattern here, though. Anytime a post ruffles a few feathers, you guys tend to rally and attack. If I were him, and this is in fact a sincere post, I would be livid at the response it has received. Well done.
E
entropy
Guest
@hillthekhore
I guess we have to figure out if we're dealing with a troll or a genuinely confused person.
I look forward to the OPs reply. Though we most likely scared him off with such a barrage of flaming.
I guess we have to figure out if we're dealing with a troll or a genuinely confused person.
I look forward to the OPs reply. Though we most likely scared him off with such a barrage of flaming.
E
entropy
Guest
@hillthekhore
I guess we have to figure out if we're dealing with a troll or a genuinely confused person.
I look forward to the OPs reply. Though we most likely scared him off with such a barrage of flaming.
I guess we have to figure out if we're dealing with a troll or a genuinely confused person.
I look forward to the OPs reply. Though we most likely scared him off with such a barrage of flaming.
E
entropy
Guest
@hillthekhore
<br />
<br />I guess we have to figure out if we're dealing with a troll or a genuinely confused person.
<br />
<br />I look forward to the OPs reply. Though we most likely scared him off with such a barrage of flaming.
<br />
<br />I guess we have to figure out if we're dealing with a troll or a genuinely confused person.
<br />
<br />I look forward to the OPs reply. Though we most likely scared him off with such a barrage of flaming.
H
hillthekhore
Guest
Human nature, unfortunately. Good luck trying to plug up <i>that</i> drain.
H
hillthekhore
Guest
Human nature, unfortunately. Good luck trying to plug up <i>that</i> drain.
H
hillthekhore
Guest
Human nature, unfortunately. Good luck trying to plug up <i>that</i> drain.
FYI:
According to Wikipedia - "a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as an online discussion forum, chat room, or blog, with the primary intent of provoking other users into a desired emotional response[2] or of otherwise disrupting normal on-topic discussion."
Or Encata - intransitive verb online fool Internet users into responding: to lure other Internet users into sending responses to carefully designed incorrect statements
So by definition continuing to respond to this thread is what a troll would want. They do not nesciarily want us to take them seriously but instead like to see us discuss, debate, or argue.
I'm not sure the OP is a troll--but either way people should say what they need to say and stop posting.
Just my opinion,
<img src="i/expressions/rose.gif" border="0">
According to Wikipedia - "a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as an online discussion forum, chat room, or blog, with the primary intent of provoking other users into a desired emotional response[2] or of otherwise disrupting normal on-topic discussion."
Or Encata - intransitive verb online fool Internet users into responding: to lure other Internet users into sending responses to carefully designed incorrect statements
So by definition continuing to respond to this thread is what a troll would want. They do not nesciarily want us to take them seriously but instead like to see us discuss, debate, or argue.
I'm not sure the OP is a troll--but either way people should say what they need to say and stop posting.
Just my opinion,
<img src="i/expressions/rose.gif" border="0">
FYI:
According to Wikipedia - "a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as an online discussion forum, chat room, or blog, with the primary intent of provoking other users into a desired emotional response[2] or of otherwise disrupting normal on-topic discussion."
Or Encata - intransitive verb online fool Internet users into responding: to lure other Internet users into sending responses to carefully designed incorrect statements
So by definition continuing to respond to this thread is what a troll would want. They do not nesciarily want us to take them seriously but instead like to see us discuss, debate, or argue.
I'm not sure the OP is a troll--but either way people should say what they need to say and stop posting.
Just my opinion,
<img src="i/expressions/rose.gif" border="0">
According to Wikipedia - "a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as an online discussion forum, chat room, or blog, with the primary intent of provoking other users into a desired emotional response[2] or of otherwise disrupting normal on-topic discussion."
Or Encata - intransitive verb online fool Internet users into responding: to lure other Internet users into sending responses to carefully designed incorrect statements
So by definition continuing to respond to this thread is what a troll would want. They do not nesciarily want us to take them seriously but instead like to see us discuss, debate, or argue.
I'm not sure the OP is a troll--but either way people should say what they need to say and stop posting.
Just my opinion,
<img src="i/expressions/rose.gif" border="0">
FYI:
<br />
<br />According to Wikipedia - "a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as an online discussion forum, chat room, or blog, with the primary intent of provoking other users into a desired emotional response[2] or of otherwise disrupting normal on-topic discussion."
<br />
<br />Or Encata - intransitive verb online fool Internet users into responding: to lure other Internet users into sending responses to carefully designed incorrect statements
<br />
<br />So by definition continuing to respond to this thread is what a troll would want. They do not nesciarily want us to take them seriously but instead like to see us discuss, debate, or argue.
<br />
<br />I'm not sure the OP is a troll--but either way people should say what they need to say and stop posting.
<br />
<br />Just my opinion,
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />
<br />According to Wikipedia - "a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as an online discussion forum, chat room, or blog, with the primary intent of provoking other users into a desired emotional response[2] or of otherwise disrupting normal on-topic discussion."
<br />
<br />Or Encata - intransitive verb online fool Internet users into responding: to lure other Internet users into sending responses to carefully designed incorrect statements
<br />
<br />So by definition continuing to respond to this thread is what a troll would want. They do not nesciarily want us to take them seriously but instead like to see us discuss, debate, or argue.
<br />
<br />I'm not sure the OP is a troll--but either way people should say what they need to say and stop posting.
<br />
<br />Just my opinion,
<br />
<br /><img src="i/expressions/rose.gif" border="0">
You can call me whatever you want, I absolutely do not care. Correct my English, I am not American or British. I believe in what I say! Those who say that they did not have symptoms of CF until sometime, they just did not treat another illness and that brought them to this situation. It is insane to give 7 months baby intervenal antibiotics for 14 days! This child will be open to all bacterias to the end of his/her life. I am not trying to prove you anything, I just want you to stop lying yourself.
To that guy who wrote that I only care about money: I am ready to do anything for my child, but not that stupid treatment that doctors prescribe. I was not speaking about daily expenses of CF diagnosed people. First expenses are enough: Imagine how many suspicions there are and all of them are being genetically tested, each person approximately for $4000-5000.
Listen, this world is not only medicines, antibiotics etc. and we have put garlics all around the bed of my child, put a lot of salt (which contains iodium), slowly stopped kreons which we don't give at all now, refused from very strong antibiotics and the child is ok now. I will not write more not to annoy you all, but please also read the links below.
I wish each of you to get healthy very very soon and be strong!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmonologychannel.com/cf/diagnosis.shtml
">http://www.pulmonologychannel....diagnosis.shtml
</a>
"About 10% to 15% of all positive sweat tests are false positives, meaning that even though the test results suggest that the patient has CF, they do not in fact have the disease. There are many conditions not related to CF that can cause false positive sweat test results. All positive tests should be repeated, usually the next day, and/or patients should be genetically screened."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.clsi.org/source/orders/free/c34-a3.pdf
">http://www.clsi.org/source/ord...free/c34-a3.pdf
</a>
"The sweat test has been reported to have unacceptably high false-positive (up to 15%) and false-negative (up to 12%) rates attributable to inaccurate methodology, technical error, and patient physiology"
and the most important moment:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=902&threadid=48942
">http://www.cysticfibrosis.com/...&threadid=48942
</a>
"False positives are rare, but do happen and is normally caused by the nurse or tech doing the test not doing it correctly. There are some medical reasons you can get a positive sweat test result, yet not have CF, but many of them are fairly uncommon diseases/syndromes and their symptoms aren't consistent with CF. Here is a list of the diseases and syndromes that I found online a few years ago:
"Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987)"."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.alrc.gov.au/publications/23-genetic-counselling-and-medical-education/access-medical-genetic-testing-and-counsel">http://www.alrc.gov.au/publica...ic-testing-and-counsel</a>
To that guy who wrote that I only care about money: I am ready to do anything for my child, but not that stupid treatment that doctors prescribe. I was not speaking about daily expenses of CF diagnosed people. First expenses are enough: Imagine how many suspicions there are and all of them are being genetically tested, each person approximately for $4000-5000.
Listen, this world is not only medicines, antibiotics etc. and we have put garlics all around the bed of my child, put a lot of salt (which contains iodium), slowly stopped kreons which we don't give at all now, refused from very strong antibiotics and the child is ok now. I will not write more not to annoy you all, but please also read the links below.
I wish each of you to get healthy very very soon and be strong!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmonologychannel.com/cf/diagnosis.shtml
">http://www.pulmonologychannel....diagnosis.shtml
</a>
"About 10% to 15% of all positive sweat tests are false positives, meaning that even though the test results suggest that the patient has CF, they do not in fact have the disease. There are many conditions not related to CF that can cause false positive sweat test results. All positive tests should be repeated, usually the next day, and/or patients should be genetically screened."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.clsi.org/source/orders/free/c34-a3.pdf
">http://www.clsi.org/source/ord...free/c34-a3.pdf
</a>
"The sweat test has been reported to have unacceptably high false-positive (up to 15%) and false-negative (up to 12%) rates attributable to inaccurate methodology, technical error, and patient physiology"
and the most important moment:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=902&threadid=48942
">http://www.cysticfibrosis.com/...&threadid=48942
</a>
"False positives are rare, but do happen and is normally caused by the nurse or tech doing the test not doing it correctly. There are some medical reasons you can get a positive sweat test result, yet not have CF, but many of them are fairly uncommon diseases/syndromes and their symptoms aren't consistent with CF. Here is a list of the diseases and syndromes that I found online a few years ago:
"Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987)"."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.alrc.gov.au/publications/23-genetic-counselling-and-medical-education/access-medical-genetic-testing-and-counsel">http://www.alrc.gov.au/publica...ic-testing-and-counsel</a>