Aa
For those post tx-Post Interferon / Ribavirin Treatment Symptoms Survey
found an interesting survey for those post tx,thought i would share it
All those post tx are welcome to share their thoughts and experiences on the same
Heres the link below
http://www.zoomerang.com/web/SharedResults/SharedResultsSurveyResultsPage.aspx?ID=L22KYULCZHEN
All those post tx are welcome to share their thoughts and experiences on the same
Heres the link below
http://www.zoomerang.com/web/SharedResults/SharedResultsSurveyResultsPage.aspx?ID=L22KYULCZHEN
Jimquote: “And my opinion is that post treatment side effects have been grossly underestimated by the medical community where many of us are told by our doctors "bye" after SVR with little rigorous follow through. Double Dose has written on this much better than myself.”
I mostly agree with you here, ‘nuff said.
jimquote: “As a side note -- given some of your previous thoughts that people who feel great don't spend a lot of time on forums like this complaining -- wouldn't that also mean that those who feel great without treating are also under-represented here? And that those with the oft mentioned "extra hepatatic" symptons are overly-represented here?”
They may be underrepresented, I really don’t know. And sure, it’s quite possible that those who are symptomatic are overrepresented here. In fact, I’d guess they are overrepresented for the same reasons I’ve already mentioned. But getting back to asymptomatic folks for a moment, just because someone physically “feels great” with an active HCV infection, that certainly doesn’t mean they also feel great emotionally or intellectually about their chronic infection (once they find out about it). You can feel fine physically and yet be worried sick about dying from your own private little time bomb…which obviously can push you into places like this. And in fact, I’ve spoken to many, many people over the years online with HCV that are asymptomatic and always have been asymptomatic. And yet they’re “prettydamscared” anyway. So scared they opt for a long, tough, unreliable treatment filled with pitfalls, dead ends and gnarly side-effects, even with minimal fibrosis. You yourself were largely asymptomatic prior to treating, weren’t you? But didn’t you lunge to the internet for information as soon as you found out you had it and fully understood that what you had could be a life threatening illness? (or whatever source of information was available to you at the time) I know I sure did. Anyway, can’t say I fully agree with your thinking here.
Alright already, lets put a fork in it!! IT'S DUN!!
I mostly agree with you here, ‘nuff said.
jimquote: “As a side note -- given some of your previous thoughts that people who feel great don't spend a lot of time on forums like this complaining -- wouldn't that also mean that those who feel great without treating are also under-represented here? And that those with the oft mentioned "extra hepatatic" symptons are overly-represented here?”
They may be underrepresented, I really don’t know. And sure, it’s quite possible that those who are symptomatic are overrepresented here. In fact, I’d guess they are overrepresented for the same reasons I’ve already mentioned. But getting back to asymptomatic folks for a moment, just because someone physically “feels great” with an active HCV infection, that certainly doesn’t mean they also feel great emotionally or intellectually about their chronic infection (once they find out about it). You can feel fine physically and yet be worried sick about dying from your own private little time bomb…which obviously can push you into places like this. And in fact, I’ve spoken to many, many people over the years online with HCV that are asymptomatic and always have been asymptomatic. And yet they’re “prettydamscared” anyway. So scared they opt for a long, tough, unreliable treatment filled with pitfalls, dead ends and gnarly side-effects, even with minimal fibrosis. You yourself were largely asymptomatic prior to treating, weren’t you? But didn’t you lunge to the internet for information as soon as you found out you had it and fully understood that what you had could be a life threatening illness? (or whatever source of information was available to you at the time) I know I sure did. Anyway, can’t say I fully agree with your thinking here.
Alright already, lets put a fork in it!! IT'S DUN!!
"...when people are incompetent in the strategies they adopt to achieve success and satisfaction, they suffer a dual burden: Not only do they reach erroneous conclusions and make unfortunate choices, but their incompetence robs them of the ability to realize it. Instead, ...they are left with the mistaken impression that they are doing just fine."
DUNNING-KRUGER EFFECT is the phenomenon wherein people who have little knowledge think that they know more than others.
The phenomenon was demonstrated in a series of experiments performed by Justin Kruger and David Dunning, then both of Cornell University. Their results were published in the Journal of Personality and Social Psychology in December 1999.
"Ignorance more frequently begets confidence than does knowledge" --Charles Darwin. Kruger and Dunning hypothesized that with a typical skill which humans may possess in greater or lesser degree,
1. Incompetent individuals tend to overestimate their own level of skill.
2. Incompetent individuals fail to recognize genuine skill in others.
3. Incompetent individuals fail to recognize the extremity of their inadequacy.
4. If they can be trained to substantially improve their own skill level, these individuals can recognize and acknowledge their own previous lack of skill.
DUNNING-KRUGER EFFECT is the phenomenon wherein people who have little knowledge think that they know more than others.
The phenomenon was demonstrated in a series of experiments performed by Justin Kruger and David Dunning, then both of Cornell University. Their results were published in the Journal of Personality and Social Psychology in December 1999.
"Ignorance more frequently begets confidence than does knowledge" --Charles Darwin. Kruger and Dunning hypothesized that with a typical skill which humans may possess in greater or lesser degree,
1. Incompetent individuals tend to overestimate their own level of skill.
2. Incompetent individuals fail to recognize genuine skill in others.
3. Incompetent individuals fail to recognize the extremity of their inadequacy.
4. If they can be trained to substantially improve their own skill level, these individuals can recognize and acknowledge their own previous lack of skill.
Jim, For fear of beating this dead horse into a frappe-ed liquid, I’ll respond to a few of your comments and reiterate a few basic points:
Jimquote: “You admit you haven't read the threads. But if you just read one or two, I think you will find that BOTH sides are presented. In other words, a snapshot of people's opinions at here at MH at a given point of time. The good, the bad, and the ugly.”
Well, no, I didn’t admit to not reading the threads. What I said was this: “Actually you're right I didn't read the posts you referenced above, but I did go through many of the ones you recently posted on a previous thread concerning this same subject matter (which included quite a few folks complaining after stopping treatment and relapsing (i.e. not achieving SVR, which obviously may be attributable to HCV again)). I'm assuming the posts you referenced on this thread are more or the less the same from the last one(s) (feel free to correct me if I'm wrong).” And you said in response “Yes, it's the same list…” So I’ve already read more than “one or two” as you suggest above (again as already stated). Plus, I actually remember reading through most of the threads I did read when they were originally posted. So believe me, I’m at least reasonably familiar with at least some (if not most) of them.
And as to the threads themselves (that you referenced), they’re a mish-mashed variety of responses like you said, and as I openly acknowledged previously they probably do lean towards the negative more than the positive. That’s why I said “Anyway, the ones I had read previously (that you posted/referenced as evidence most people felt like you felt after treatment; i.e. bad) primarily were weighted towards those who had problems after treating (again like yourself).” But that’s not what my point was to you. My contention was concerning the scientific legitimacy of using these threads (and now the referenced unscientific poll) to assert the argument you’ve been repeatedly asserting. But while we’re on the subject of the threads you referenced, without tediously ciphering though every one of them and denoting who’s positive and who’s negative with their post tx experience, there’s a lot of ambiguity I could see right offhand (and this is completely apart from the other issues I raised earlier). Things like how old person A was and how old person B was (which is also an important factor in post tx recovery), and how soon after stopping treatment they are (which obviously is another important factor), or how long their treatment was (mostly from 24 or 48 week treatment differences), or if they extended their course of treatment beyond normal guidelines (as you did), or if they’ve treated multiple times before their latest attempt, or if they took larger doses of the treatment drugs than is normally prescribed (again as you did), or if they even achieved their SVR status at the completion of their treatment in the first place. Don’t forget that what we’re discussing here is after achieving SVR, how do folks feel well after the recovery period? In fact, many of the negative posts I read within some of the threads you referenced had people who relapsed after treatment. So even if the sampling of threads you referenced were even remotely scientifically sampled (which again they’re not at all), what’s in them is not so easy to decipher without also knowing about all of the variables mentioned pertaining to each individual (and I’m sure several more given a few moments of thought on the matter). Bottom line is that the reason I take issue with you concerning your post tx feel bad supposition, is that after seeing multiple posts from you along this line, while at the same time gradually recovering from my own treatment – and feeling fantastic…I just HAVE to weigh in on this.
jimquote:” Now, if you want to discuss whether the survey -- and those that post in this discussion group -- are representative of the greater Hep C population, that's another issue, and frankly I don't see how one could prove it one way or another, since to the best of my knowledge no studies have been done. Unfortunately.”
As previously stated, I agree. We can’t know with any real certainty. All we can do is surmise based on what we see at places like this. But places like this may not be fully reflective of what’s really going on within the greater HCV/SVR community. I especially believe this to be true amongst younger folks. Take a look around at the average age within this forum. Most of us are middle aged or older. I don’t think any of us disagree that the treatment hammers older folks much harder than it does younger folks (all other things being equal). And of course, the likelihood it’ll do lasting harm, or be slow to recover from, increases the older we get too. I think a lot of this debate really comes down to that, and from memory the unscientific “internet data” also reflects that.
jimquote: “You know, maybe you're right, and the "whiners" (my words for now) are over-represented here, as opposed to the overall Hep C population, for reasons you've stated.”
I don’t think “whiners” is a good way of putting it at all (even if you take ownership of the word “for now”). And I thought Valtod was very out of line by using that term (in his post to dointime) and insinuating I felt that way towards anyone who expresses problems after treatment (one of his many ad hominish bogus straw men). I don’t feel that way at all. Never did in the past, don’t now, and never will in the future. It’s a meanspirited and loaded word, and it not so subtly implies I think of those who express hardships after treating as being whiners or bellyachers making up their complaints. If you and valtod wish to use the word “whiners” within this context, you go right ahead, but don’t try to associate it with my thoughts or statements (i.e. “maybe you’re right, and the “whiners”…Or, maybe you're wrong, and the "whiners"…”). Not only do I think whiners is a very bad way of putting it, I myself have been one of the biggest whiners on this forum. When I was treating and had my bad rash, I whined like an afterburning turbojet. I’ve also frequently whined about how bad I felt when I had a chronic case of hep C. And believe me, that was heartfelt whining…sincere and emphatic. So lets get something clear right up front, I count myself amongst the whiniest of the whiners (and proudfully so). And I don’t consider anyone who expresses pain and suffering as a result of hep C both before, during, or after treatment as a whiner. But I really do appreciate the repeated use of the word “whiners”, initially from Valtod and now you when discussing where I’m coming from. If someone didn’t bother to carefully read through this lengthy thread, based on what you guys say they might come away with the impression that’s what I actually said or meant. So that’s a nice touch, thanks for that.
Jimquote: “Or, maybe you're wrong, and the "whiners" are under-represented, because many people may not want to "whine" in a public forum like this about their post tx experience for a number of reasons including what appears to be the big one -- that they don't want to discourage those currently on treatment.”
Nah, I don’t think so. I don’t think “THE WHINERS” are underrepresented. Just my opinion, but I do generally think that when people SVR and start feeling better, sooner or later they just get on with it. They don’t hang out in internet forums for HCV and obsess about symptoms and problems they no longer have. Why would they? Incidentally, has anyone seen niceguy lately?? *hint hint* (cont...)
Jimquote: “You admit you haven't read the threads. But if you just read one or two, I think you will find that BOTH sides are presented. In other words, a snapshot of people's opinions at here at MH at a given point of time. The good, the bad, and the ugly.”
Well, no, I didn’t admit to not reading the threads. What I said was this: “Actually you're right I didn't read the posts you referenced above, but I did go through many of the ones you recently posted on a previous thread concerning this same subject matter (which included quite a few folks complaining after stopping treatment and relapsing (i.e. not achieving SVR, which obviously may be attributable to HCV again)). I'm assuming the posts you referenced on this thread are more or the less the same from the last one(s) (feel free to correct me if I'm wrong).” And you said in response “Yes, it's the same list…” So I’ve already read more than “one or two” as you suggest above (again as already stated). Plus, I actually remember reading through most of the threads I did read when they were originally posted. So believe me, I’m at least reasonably familiar with at least some (if not most) of them.
And as to the threads themselves (that you referenced), they’re a mish-mashed variety of responses like you said, and as I openly acknowledged previously they probably do lean towards the negative more than the positive. That’s why I said “Anyway, the ones I had read previously (that you posted/referenced as evidence most people felt like you felt after treatment; i.e. bad) primarily were weighted towards those who had problems after treating (again like yourself).” But that’s not what my point was to you. My contention was concerning the scientific legitimacy of using these threads (and now the referenced unscientific poll) to assert the argument you’ve been repeatedly asserting. But while we’re on the subject of the threads you referenced, without tediously ciphering though every one of them and denoting who’s positive and who’s negative with their post tx experience, there’s a lot of ambiguity I could see right offhand (and this is completely apart from the other issues I raised earlier). Things like how old person A was and how old person B was (which is also an important factor in post tx recovery), and how soon after stopping treatment they are (which obviously is another important factor), or how long their treatment was (mostly from 24 or 48 week treatment differences), or if they extended their course of treatment beyond normal guidelines (as you did), or if they’ve treated multiple times before their latest attempt, or if they took larger doses of the treatment drugs than is normally prescribed (again as you did), or if they even achieved their SVR status at the completion of their treatment in the first place. Don’t forget that what we’re discussing here is after achieving SVR, how do folks feel well after the recovery period? In fact, many of the negative posts I read within some of the threads you referenced had people who relapsed after treatment. So even if the sampling of threads you referenced were even remotely scientifically sampled (which again they’re not at all), what’s in them is not so easy to decipher without also knowing about all of the variables mentioned pertaining to each individual (and I’m sure several more given a few moments of thought on the matter). Bottom line is that the reason I take issue with you concerning your post tx feel bad supposition, is that after seeing multiple posts from you along this line, while at the same time gradually recovering from my own treatment – and feeling fantastic…I just HAVE to weigh in on this.
jimquote:” Now, if you want to discuss whether the survey -- and those that post in this discussion group -- are representative of the greater Hep C population, that's another issue, and frankly I don't see how one could prove it one way or another, since to the best of my knowledge no studies have been done. Unfortunately.”
As previously stated, I agree. We can’t know with any real certainty. All we can do is surmise based on what we see at places like this. But places like this may not be fully reflective of what’s really going on within the greater HCV/SVR community. I especially believe this to be true amongst younger folks. Take a look around at the average age within this forum. Most of us are middle aged or older. I don’t think any of us disagree that the treatment hammers older folks much harder than it does younger folks (all other things being equal). And of course, the likelihood it’ll do lasting harm, or be slow to recover from, increases the older we get too. I think a lot of this debate really comes down to that, and from memory the unscientific “internet data” also reflects that.
jimquote: “You know, maybe you're right, and the "whiners" (my words for now) are over-represented here, as opposed to the overall Hep C population, for reasons you've stated.”
I don’t think “whiners” is a good way of putting it at all (even if you take ownership of the word “for now”). And I thought Valtod was very out of line by using that term (in his post to dointime) and insinuating I felt that way towards anyone who expresses problems after treatment (one of his many ad hominish bogus straw men). I don’t feel that way at all. Never did in the past, don’t now, and never will in the future. It’s a meanspirited and loaded word, and it not so subtly implies I think of those who express hardships after treating as being whiners or bellyachers making up their complaints. If you and valtod wish to use the word “whiners” within this context, you go right ahead, but don’t try to associate it with my thoughts or statements (i.e. “maybe you’re right, and the “whiners”…Or, maybe you're wrong, and the "whiners"…”). Not only do I think whiners is a very bad way of putting it, I myself have been one of the biggest whiners on this forum. When I was treating and had my bad rash, I whined like an afterburning turbojet. I’ve also frequently whined about how bad I felt when I had a chronic case of hep C. And believe me, that was heartfelt whining…sincere and emphatic. So lets get something clear right up front, I count myself amongst the whiniest of the whiners (and proudfully so). And I don’t consider anyone who expresses pain and suffering as a result of hep C both before, during, or after treatment as a whiner. But I really do appreciate the repeated use of the word “whiners”, initially from Valtod and now you when discussing where I’m coming from. If someone didn’t bother to carefully read through this lengthy thread, based on what you guys say they might come away with the impression that’s what I actually said or meant. So that’s a nice touch, thanks for that.
Jimquote: “Or, maybe you're wrong, and the "whiners" are under-represented, because many people may not want to "whine" in a public forum like this about their post tx experience for a number of reasons including what appears to be the big one -- that they don't want to discourage those currently on treatment.”
Nah, I don’t think so. I don’t think “THE WHINERS” are underrepresented. Just my opinion, but I do generally think that when people SVR and start feeling better, sooner or later they just get on with it. They don’t hang out in internet forums for HCV and obsess about symptoms and problems they no longer have. Why would they? Incidentally, has anyone seen niceguy lately?? *hint hint* (cont...)
i will never feel better than ever...i think every existing or latent problem, both physical&mental, was amped up by trx drugs..i am now 1yr+ post-trx,SVR .i am glad i trx'd and suceeded and i am sooo glad it's over..cause trx kiks @ss and my butts still sore!
Cognitive biases: distortions in the way humans perceive reality.
* Bias blind spot: people are quite capable of recognizing the operation of bias in human judgment - except when that bias is their own.
People's tendency to deny THEIR OWN BIAS, even while recognizing bias in others, reveals a profound shortcoming in self-awareness with important consequences for interpersonal and intergroup conflict.
http://cbdr.cmu.edu/event.asp?eventID=15
* Optimism bias: the DEMONSTRATED SYSTEMATIC tendency for people to be over-optimistic about the outcome of planned actions.
* Positive outcome bias: the tendency for people to simply overestimate the likelihood of good things happening rather than bad things (Valence effect).
* Wishful thinking: the formation of beliefs and making decisions according to what might be pleasing to imagine instead of by appealing to evidence or rationality. (Also logical fallacy.)
Studies have CONSISTENTLY shown that holding all else equal subjects will predict positive outcomes to be more likely than negative outcomes.
* Illusion of control: the tendency for human beings to believe they can control or at least influence outcomes that they clearly cannot.
* Illusion of asymmetric insight: people perceive their knowledge of their peers to surpass their peers' knowledge of them.
* Illusion of transparency: people overestimate others' ability to know them, and they also overestimate their ability to know others.
http://en.wikipedia.org/wiki/List_of_cognitive_biases
* Bias blind spot: people are quite capable of recognizing the operation of bias in human judgment - except when that bias is their own.
People's tendency to deny THEIR OWN BIAS, even while recognizing bias in others, reveals a profound shortcoming in self-awareness with important consequences for interpersonal and intergroup conflict.
http://cbdr.cmu.edu/event.asp?eventID=15
* Optimism bias: the DEMONSTRATED SYSTEMATIC tendency for people to be over-optimistic about the outcome of planned actions.
* Positive outcome bias: the tendency for people to simply overestimate the likelihood of good things happening rather than bad things (Valence effect).
* Wishful thinking: the formation of beliefs and making decisions according to what might be pleasing to imagine instead of by appealing to evidence or rationality. (Also logical fallacy.)
Studies have CONSISTENTLY shown that holding all else equal subjects will predict positive outcomes to be more likely than negative outcomes.
* Illusion of control: the tendency for human beings to believe they can control or at least influence outcomes that they clearly cannot.
* Illusion of asymmetric insight: people perceive their knowledge of their peers to surpass their peers' knowledge of them.
* Illusion of transparency: people overestimate others' ability to know them, and they also overestimate their ability to know others.
http://en.wikipedia.org/wiki/List_of_cognitive_biases
http://www.users.muohio.edu/shermarc/p324opt.shtml
Optimistic Bias in Perceiving Physical and Mental Health Risks
The optimistic bias is the tendency to view oneself as invulnerable (or less likely than others) to experiencing negative life events. This personal fable (Elkind, 1967) also involves the tendency to overestimate one’s probability of experiencing positive life events. For example, in the area of health, research has shown that more than half of surveyed individuals perceive that they are less likely than others to be afflicted with such health outcomes as drug addiction, cancer, tooth decay, and auto injury. Harris and Guten (1979) found that only a small proportion of the subjects in their study reported to be at a higher risk for a given disease while a much larger proportion assessed their risk as being lower.
Diseases that are related to behavior risk factors,or diseases that show an increased perceived controllability, increase the optimistic bias in the perception of risk for that disease (Taylor, 1989; Weinstein, 1982, 1984, 1987).
Another factor contributing to the optimistic bias is the nature of the comparison other. Studies have shown that when subjects are asked to compare their futures to the future of the "typical other person" (e.g. Perloff, 1987), " the average other" (Perloff, 1987), "(most) people they know" (e.g. Drake, 1984), or "other students at the same university and same sex" (e.g. Weinstein, 1980) the optimistic bias is prevalent.
Neil Weinstein (1980) developed the idea of unrealistic optimism about future life events. He later focused his research on unrealistic optimism about susceptibility to health problems (Weinstein, 1987).
The concept of personal responsibility for health is deeply ingrained in our culture (Brownell, 1991).
Along these same lines is the issue of perceived control. Because of the proliferation of health-related information in our culture, Americans tend to believe that they have considerable control over what will happen to them in the future and that they are personally responsible for any illness they might develop (Brownell, 1990).
According to Markus & Kitayama (1991), those with an independent construal of self strive to assert their individuality and uniqueness and stress their separateness form the social world, illustrated by North American and Western European cultures. In contrast, those with an interdependent construal of self are characterized by an emphasis on the interrelatedness of the individual to others and to the environment. Alone, the self has no meaning. This is illustrated by most Asian cultures. People in cultures where independence is a valued trait may be more likely to use self-enhancing biases, and are therefore more optimistic about their health and their control over it.
Optimistic Bias in Perceiving Physical and Mental Health Risks
The optimistic bias is the tendency to view oneself as invulnerable (or less likely than others) to experiencing negative life events. This personal fable (Elkind, 1967) also involves the tendency to overestimate one’s probability of experiencing positive life events. For example, in the area of health, research has shown that more than half of surveyed individuals perceive that they are less likely than others to be afflicted with such health outcomes as drug addiction, cancer, tooth decay, and auto injury. Harris and Guten (1979) found that only a small proportion of the subjects in their study reported to be at a higher risk for a given disease while a much larger proportion assessed their risk as being lower.
Diseases that are related to behavior risk factors,or diseases that show an increased perceived controllability, increase the optimistic bias in the perception of risk for that disease (Taylor, 1989; Weinstein, 1982, 1984, 1987).
Another factor contributing to the optimistic bias is the nature of the comparison other. Studies have shown that when subjects are asked to compare their futures to the future of the "typical other person" (e.g. Perloff, 1987), " the average other" (Perloff, 1987), "(most) people they know" (e.g. Drake, 1984), or "other students at the same university and same sex" (e.g. Weinstein, 1980) the optimistic bias is prevalent.
Neil Weinstein (1980) developed the idea of unrealistic optimism about future life events. He later focused his research on unrealistic optimism about susceptibility to health problems (Weinstein, 1987).
The concept of personal responsibility for health is deeply ingrained in our culture (Brownell, 1991).
Along these same lines is the issue of perceived control. Because of the proliferation of health-related information in our culture, Americans tend to believe that they have considerable control over what will happen to them in the future and that they are personally responsible for any illness they might develop (Brownell, 1990).
According to Markus & Kitayama (1991), those with an independent construal of self strive to assert their individuality and uniqueness and stress their separateness form the social world, illustrated by North American and Western European cultures. In contrast, those with an interdependent construal of self are characterized by an emphasis on the interrelatedness of the individual to others and to the environment. Alone, the self has no meaning. This is illustrated by most Asian cultures. People in cultures where independence is a valued trait may be more likely to use self-enhancing biases, and are therefore more optimistic about their health and their control over it.
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