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

[orleans]

Hey, Grim to say the least. Let's hope, that the tendency of folks that have a negitive experience with something are the ones most likely to respond to a survey such as this, holds true here. The number of problems and the %s affected by them on this survey are hard to believe. Seems like if the were accurate Drs would refuse to do it and the FDA would pull the treatment. jm

[jmjm530]

Survey seems consistent with what I've seen posted here. Most telling to me is that 40% reported feeling worse after treating than before: 29% reported feeling about the same; and 31% reported feeling better after treatment.

What that means is that around 2 out of 3 people felt either worse or no different after treating. This should be a reality check for those who treat primarily because of the so-called extra-hepatatic symptons, i.e. to feel better. This study and anecdotal reports here suggest you will not feel better after treatment.

There are reasons to treat, but where I come down is that the primary reason is to regress or stop liver damage with the trade off that you probably will feel no better after treatment, possibly even worse. With newer treatments around the corner, this should be of interest to anyone with little or no liver damage. What these anecdotal studies say to me is to wait, not treat with current drugs.

-- Jim

[sfbaygirl]

Wow,  I haven't looked at this site yet,  but from what you guys are saying, or at least Jim, is that 2 out of 3 feel worse or no different after tx. That sure holds true for me. I know I felt worse after tx than during. Perhaps I am a "rare" case,  but from those who have relapsed  or SVRed, I haven't read many great stories of the aftermath. I just posted about this on the other side.  While I had a few sx before tx, I am not sure it was worth my while to now have an autoimmune disease and be taking blood thinners the rest of my life. I still have no energy after 6 mos. post and I relapsed. Doesn't sit well with me as I consider re-treating in the future, that is for sure.

[orleans]

Hey, I've been looking at this thing. If you compare the 1yr+ with the pretx groups you find a very modest improvement across the board. As you might remember I am stage 3 (bx jan.07) and am loathe to treat. Infected 37 years and I feel really very good. Do you think it stands to reason that those with few symptoms going in are more likely to come out better than those with many? It very well be that those with problems have more room for improvment. jerry

[jmjm530]

Jerry: Do you think it stands to reason that those with few symptoms going in are more likely to come out better than those with many?
-------------------------------------------------------------
Yes. If you're lucky you come out feeling the same. If not, you come out worse. Here is our own little 'survey' consisting of posts describing side effects, many post treatment. And yes, there was a modest improvement 1 year post, which is encouraging. Hopefully those of us who experience post treatment symptons from the interferon will start to feel better gradually. Still a huge chunk out of ones life.

Our 'survey':

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html

[jmjm530]

Sorry, my answer above should have been "No" for the reason given. If you start out feeling good, you pretty much have only one way to go which is to end up feeling worse. If you're lucky, maybe you'll end up the same.

[desrt]

The results are believable and seem to fit what I've observed. I do tend to be suspicious of surveys where everything comes out even and adds up to a neat 100% - someone always breaks their #2 pencil, has an answer that doesn't fit neatly into the format, or doesn't understand the question/fills out the questionaire incorrectly ;-)
The good news in my case is, that after several years, a lot of the post-tx sx have faded. Of course this wouldn't apply to someone who has permanently damaged their thyroid, but I think it does give more hope than the results of a, basically short term post-tx survey might imply. People are always disappointed when 'modern medicine' doesn't wave its magic wand and make it all better instantly. I'm willing to live with slight hypertension and a little insomnia (that I can't prove are tx-related anyway) and have a lower risk of HCC and cirrhosis in the coming years.

[shastri20032003]

The results of a survey would be much more reliable  if the total number of people being surveyed are in thousands and not in hundreds...essentially the range should be much larger and chosen randomly
In this survey the total number is only 500 people and I think this number is not big enough to come to any conclusion

[NYgirl]

well i have to be honest I definitely don't feel better or even as good as I did pre-tx but...I do understand that I put poison into my body for 72 weeks.  I didn't do it for "fun" I did it because it was necessary to try to save my life.

So I guess if I "saved my life" but feel worse - it's ok. I try to think of it that way.

[Valtod]

All these people surveyed have better than average: SVR rate, G1 ratio, length of Tx (40% did < 48 weeks). That means that for us here, especially the extenders, the odds for no long-term SX and better quality of life are even grimmer. Probably, 5 or 10 years from now, it'll be accepted truth that extending Tx guaranties irreversible damages.

Also, another myth dispelled here: the fading away SX. For example, skin problems - 39% first 6 months, 28% first 1 year, and STILL 28% after that. So basically, if you have it, it's yours forever.

I agree with Jim that you shouldn't treat just to "feel better". But now I start to think that you also shouldn't treat just to "regress liver damage", if you're going to feel much worse for the rest of your life. Especially when one of the possible long-term SX of Tx may be much faster progress of liver damage, instead of the expected regress.

On a Quality of Life scale of 0-10 (where 10 is living normal life without health problems and 0 is constant pain and anguish), my life pre-Tx was probably 7 and now is 2 on good days. Actually, the argument that being dead is a better option than living in a torture chamber starts to make a lot of sense in the nasty post-Tx landscape.

[jmjm530]

It personally disconcerting that so many people start their treatment journey here with a post that says something like "I've been feeling so bad/tired/(fill in the blank) lately that I knew it was time to treat.

What they are doing, of course, is making the connection between the symptons they feel and their Hep C. Whether there is a cause and effect (maybe, maybe not) is one thing, but the problem is that so many seem to think that treating will take care of these symptons. This study and other show that statistically the opposite may happen.

I'm certainly not against treatment -- I treated myself -- but I think it's important that people make the decision with realistic expectations.

-- Jim

[pigeonca]

Because of autoimmune skin disease, I treated for only 13 miserable weeks - but am probably going to be SVR (still UND at 4 months post tx), which I guess is great.  

So far I've suffered no further exacerbations of the skin problems, which were becoming permanent disfigurations while treating.  But I have to say I feel no better than I did before treating, still unable to make it through an 8 to 10 hour work day without a good hour's nap.  

I have one very interesting project coming up, fortunately for a producer who always uses me to edit her documentaries, that has no definite air date (it's for PBS, and they're pretty flexible), so I suspect that may be my swan song as a film editor.  Then I think I'm going to have to look into semi-retirement or a new career.  In another two years or so I'll be eligible for social security, which combined with some part-time gigs might support me - unfortunately NOT in the south of France or Tuscany as I'd always hoped.

I had always figured I'd never retire, simply reduce the number of weeks I worked.  To not be able to do so is quite depressing.  Maybe I'll feel better by this time next year.  Sure hope so, and hope all of you do too.  

Looking back, I still think I did the right thing in treating, since I was already feeling pretty low beforehand.  But if I were a person in my shape (geno 2, grade 2, stage 2) and feeling terrific, I'd wait for the new meds before undergoing treatment.

[mremeet]

I'm about 15 weeks post tx, and basically I feel great. I do have sore ankles and feet when I get up in the morning, probably an arthritic vestige of the IFN (that I did not have prior to treating). I've also put on a few pounds - I started tx at 180 lbs, dropped to about 165lbs at my lowest and now have jumped up to 200lbs (the heaviest I've ever been in my life (I'm 6'2" btw)). But I'm pretty sure the arthritic stiffness will go away in time, and I'm really to blame for the weight gain. I've been putting back a few too many microbrews and generally eating too much good food (and honestly not feeling guilty about it either!) since stopping treatment. No exercise to speak of either, so I can't really solely blame tx for that problem.

Otherwise I feel fantastic and look healthy. My eyesight is sharper, by hearing is better, my mental and emotional clarity is returning, my skin is cleared up and feeling good. My pre-tx fatigue and malaise seems to have up and left the building (something that's been my constant companion for 25 years). I feel cured, I feel like I've waken up from a long, dreary bad nightmare that's lasted for 25 years. I really do, and I'm starting to suspect it's because the HCV is gone and this may be a lasting situation, not some sort of near term post tx honeymoon period (where I eventually will return to my old self again). I could be wrong about that, only time will tell. But so far so good, and I know there are many others out there that feel good like me too. Pln (pam) is one of them, she told me she feels great and looks great since getting off the drugs and nailing her SVR. So did APK, he sings loud and bold praises about his SVR and how he feels. I think there's a lot more out there like us, you just do not and will not hear about them on internet forums like this. People who feel good get on with their lives and move on. Generally speaking they don't hang out on internet forums and post about how great they feel, and they don't take the time to fill out some completely unscientific internet survey either. They simply go on with their lives, no need to mope and complain and obsess and seek out help online anymore. And in saying that of course I'm not in any way attempting to diminish or dismiss the hardships or suffering that others have experienced post tx (which I absolutely believe are legitimate). But the facts are the facts and both sides should be given equal consideration.

And yes, of course the referenced survey above is completely unscientific as are the repeatedly and selectively cherry picked anecdotal medhelp posts referenced above. Those surveys also don't include a control group who've never had HCV and haven't treated using IFN+riba. Take a look at the age clustering - how do you think ordinary people (who never had HCV) would score on this survey? Especially considering how many HCV+ people either live or have extensively lived lives that aren't exactly "health oriented" (in contrast to the general/HCV negative populace). Think about it.

I started treatment because I have been sick for a long, long time, and I've felt sick for a long, long time. I wanted to be cured of the virus so I could arrest any further damage to my liver and also in the hope of feeling better too (when treatment was over, of course). I felt so strongly about this, I was willing to take the risk of treatment and being exposed to an experimental drug to achieve this goal (even in the face of minimal fibrosis). As it's turned out so far, by god I think I've made a good decision. I've apparently achieved a very substantial resolution of my hepatic symptoms (for now anyway) - even in the face of the microbrew guzzling, no exercise, food gobbling, fat arsed lifestyle I've been enjoying since treatment ended. Maybe I'll come to qualify or even retract that statement in the future. But so far, SO GOOD!

[FlGuy]

You may find yourself as the poster child for VX.  Don't worry, then can airbush a few excess pounds when they do the photo shoot.
I also felt great after tx#1. It's why the relaspe was a litte extra shcocking.  I have no reason not to expect the same after tx#2 - but with a different result, of course.

[jmjm530]

Mre: And yes, of course the referenced survey above is completely unscientific as are the repeatedly and selectively cherry picked anecdotal medhelp posts referenced above.
-----------------
You're either mischaracterizing the links I posted, or you haven't read them. These links are representative of all members posting at a given time frame PRO and CON, with some very heated arguments both ways. If you think these posts are "cherry picked" please show me some threads on post treatment symptons that you think are more representative and I'll gladly add it to the list the next time I post it. If I did wanted to "cherry pick" I would have done some editing. I think it's teriffic you're feeling better post treatment, but my take from reading posts here for two years is that you're in a minority. Again, I'll be happy to add any on topic thread to the list.

-- Jim

[mremeet]

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). Anyway, the ones I had read previously (that you posted/referenced as evidence most people felt like you felt after treatment; ie bad) primarily were weighted towards those who had problems after treating (again like yourself). This is natural and human and understandable, and I certainly don't think you did it deliberately to mislead anyone, you did it because you honestly believe it's true. But the point you may (or may not) be missing is that internet surveys or improptu/ad hoc online polls are simply sampling (a) those that are on the internet, and (b) those that are motivated enough to provide an opinion or fill out an online questionaire. They are not a true *random* sampling of all people within the general population with HCV who have or have not treated successfully. Online polls are also subject to wildly unrepresentative results as a consequence of a selective herd of people overrepresentative people coming from a particular ideological online group completing the poll en masse. These polls also usually do not include control groups nor do they incorporate a scientifically valid statistical analysis that accounts for how non-infected ordinary people within the same age/lifestyle/socioeconomic class etc feel within the same age bracket.

And speaking for opinions referenced in many of your medhelp links: Who are the most likely people to feel sufficiently motivated to fill out or type out an opinion on this subject? Especially if doing so may seem to step on the toes or otherwise appear dismissive/contradictive of those that are still suffering post tx? It's a bit like talking to a person who's in a wheelchair and can't walk. Listening to that person bemoan their pain and inability to walk and then telling that person you can walk and run just fine and feel great. If you're not in the wheelchair, you're just going to keep your fat trap shut for obvious reasons. And again, these polls/opinions exclude all others who are not on the internet. What is the breakdown of those with HCV/treating on the internet vs not on the internet?? I don't know, but I'd guess the amount of people who need HCV treatment or have gotten treatment and do not regularly visit or participate in online forums/polls far outweighs those that do (especially considering those within the so called third world)

Bottomline is that both the poll/survey and the posts that you referenced are unscientific as all get out. And you ask me to look up posts that are more positive and you'll include them in your list. You can consider my posts as more positive, apk's and plns and many others. But am I going to take the time to hunt them all down? Collate, arrange and display them here for you? No, I'm not. I'm feeling pretty good and don't feel motivated to do so. I've got bigger fish to fry (which again alludes to why you don't hear from people like this very often). And obviously you've been collating, saving and pasting these links yourself (which I call "cherry picked"). How much you wanna make a bet I can find several posts in the past where people who have completed treatment and attested they feel great - and yet you've somehow left their sentiments out of your list? And again, you're obviously not doing it deliberately, I know you don't want to mislead anyone. But whether you realize you're doing it or not, you are doing it (i.e. being somewhat selective in your referencing in a manner that generally bolsters and validates your personal sentiments/experience on this troubling and emotional matter).

But we appear to be interested in getting to the truth of the matter here. If we are, repeatedly insinuating or otherwise being somewhat overly suggestive that these anecdotal experiences or unscientific polls constitute good or reasonable evidence that the post tx SVR crowd generally is either worse off or no better off after stopping treatment, is simply inconclusive (and quite possibly wrong). That assertion may in fact turn out to be true, but the "evidence" presented and discussed in this thread and many that have preceded it far from demonstrate that assertion as being true.

[mremeet]

The only way I would allow myself to be used as a VX poster child is if they would also include a picture of me with my rash at its peak alongside it. They could caption it: "Better red than dead" ;-)

[jmjm530]

Yes, it's the same list, and again it's representative of BOTH positive and negative experiences. If the threads are more weighted toward the negative, it's only because that is how the discussion group responded at that point in time. BTW I will add this thread to the list, as like in many of the threads both points of view are spoken.

And, of course, no one has made any claims that these threads are anything but anecdotal, or that the poll someone else posted is 'scientific'. Still, I feel both poll and threads representative of the experiences I've read here over the years. No one has used the word "evidence". The threads are the threads and the poll is the poll and our opinions are our opinions. And until the medical community actually does scientific studies on this (not holding my breath) that is all we've got.

[Valtod]

Marie Antoinette apparently also felt great when she said "Let them eat cake".

I also felt great  when I had the chance to listen an informal discussion among several top hepatologists at a conference 3 years ago. They were talking about patients' quality of life and cost-benefit analysis of PegIntron/RBV treatment. Their spectrum of opinions ranged from skeptical to really negative. And my instant conclusion was that their pessimistic attitude was influenced by professional deformations.

It didn't even cross my mind that, based on their expertise and experience, they might  very well be right... I guess, because I felt great at the time.

Last year, when I called for a dermatologist appointment, I heard the standard medical emergency message: "If this is a medical emergency, please hang up and dial 911." And I was thinking, "What kind of medical emergency you may have when calling a dermatologist? A pimple on your nose? An eczema that can't wait until tomorrow morning?" I guess I felt great at the time and I never had a serious skin problem in my life.

Now, when I know what is to have such a bad flare up of rash that you can't open your swollen eyelids, I begin to appreciate the notion of skin condition emergency.

There's a well known psychological bias for unrealistic and even irrational favoring of positive outcomes. Additionally, cultural and social pressures push these attitude even further.

I'd suggest a very interesting book on the subject "Never Saw It Coming: Cultural Challenges to Envisioning the Worst" by Karen Cerulo.

-----------
People are much better at imagining best-case scenarios (I could win the lottery!) than worst-case scenarios (A hurricane could destroy my neighborhood!). This is true not just of their approach to imagining the future, but of their memories as well: people are better able to describe the best moments of their lives than they are the worst.

Karen Cerulo argues that in American society there is a 'positive symmetry,' a tendency to focus on and exaggerate the best, the winner, the most optimistic outcome and outlook. Thus, the conceptions of the worst are underdeveloped and elided. Naturally, as she masterfully outlines, there are dramatic consequences to this characterological inability to imagine and prepare for the worst.

[dointime]

"Marie Antoinette apparently also felt great when she said "Let them eat cake".

In Marie's case the reference infers that she didn't have a clue as to the mood or circumstances of the populace who were so enraged that they came after her head.

In mremeet's case he makes it very clear that he knows exactly how it goes down when somebody who feels great brags about it to people who feel like sh!te.  He knows it would be much easier just to keep quiet.  He could just quietly slope off with his SVR and not bother to make anybody the wiser.  Personally I'm very glad he took the time and had the guts to tell his side of things before going off to fry his bigger fish.  So thanks mre, I'll miss your take on things.  We were lucky to have you along for a while - and good fishing.

Valtod - Karen Cerulo - great book reference, thanks.

dointime.              

[dointime]

PS And also thanks to everybody who posted here about the risks, the downside and aftermath of tx.  People need to hear that too.  I certainly never appreciated how bad these drugs were till I treated myself.  I was a classic case of blind optimism and nobody could have disabused me of it, I was so gung ho to treat.  Well I found out, and won't be putting those drugs in my body again any time soon.

dointime.    

[dlr2007]

Well, this is definitely a heated subject- for good reason. Reading over this, I see very intelligent, well-educated people with strong- and different opinions. I respect you all-  I've read your advice and it's taken me from someone who knew NOTHING about Hep C, just that I have it, to someone who knows quite a lot. And I'm now able to face this disease with much less fear, because I know what I'm up against.
  I treated 12 years ago with 3xpr wk interferon. I had no sx, but never reached UND. I'm not gonna tx now cuz I'm a Stage 1- but I'm researching tx for my hubby. Due to platelets of 106, a FibroSpect II score of 67 and his general fatigue, I'm guessing he's further along in damage than I am. I hope I'm wrong. When he finally gets his bx, I will probably be his strongest influence on whether to tx or not. My main concerns are- like Valtex mentioned, if tx fails, that liver damage will progress more quickly after tx than before. I never heard of that before- will have to research that one further. Also, it is very scary to think of a person's quality of life being ruined, esp if they don't reach SVR, or relapse. I'm also very curious to know- if a person tx'ed previously with no major sx or longterm ill effects, are they likely to have the same results with their next tx? There is so much to think about- and since many people don't go online or participate in the surveys, we'll never really get the whole picture. I'm grateful to be able to come here and learn more about it though.
-Dee

[debnevada]

I assist a certain medical group's nurse with support groups. not all members are treaters or even contemplating treatment. I assist because of my experience as a therapist running groups.

i am told to minimize sides at these meetings.

[drofi]

I posted this in the other forum, but just noted the discussion happens here.
Btw, it seems it did not work well to separate the forums... just a thought.
drofi

Sorry to be honest, but this survey has one big mistake: It did not differentiate the answers between those who got SVR and the relapsers and nonresponders. In addition there was no differentiation between fibrosis or zirrhosis grading and feeling well.
There is a publication from 2006 about a similar, but much better German survey with more (714) patients : http://tinyurl.com/2c6ksq

Only 5.1% would not do tx again. Quality of life was better after Tx, but depending on the points mentioned above.

Another point to notice is the bias: People who feel well after therapy and have SVR, often do not want to continue thinking and talking about hep, they are just happy to be back to life. They disappear from the scene and do not give input to surveys. If you still have big problems, you are more interested in things. That is a bias in hep forums like this too!

And there are two other points to have in mind:
Many people who had hep C feel better now. Why? Because they are dead! Don’t forget that we don’t do Tx just for fun.
To tell somebody to wait for better stuff is easy, especially if you have done Tx and have SVR. But who is able to promiss, that the new stuff will enter the market without causing new longterm problems, and that something will enter the market at all? Don’t forget that all the presentations given from companies are not much more than marketing noise, Vertex is not the FDA!

Take care!
drofi

[drofi]

You are genotype 2 and say you would wait for "THE" new meds? Which new meds? Thera are none for geno 2 and 3.
The moist promissing new drug is Telaprevir, which will be helpful for for Genotype 1 hopefully. The molecular desing was done for the NS3-protease of geno 1, there are pilot in-vitro data for other genotype only.

[drofi]

excerpt from the german survey:

"Conclusions: The data show that the public
opinion is wrong when pretending that hepatitis C today is just
a disease of drug addicts. Our analysis demonstrates for the first
time that many HCV-infected subjects in Germany have problems
with their insurances and jobs. German subjects arewell informed
about their infection including genotype, liver histology, ALT and
HCV-RNA; on the other hand, there are information deficits and
fears concerning the mode of infection. The recent analysis clearly
shows that HCV-infected subjects consider the public information
about the HCV infection as catastrophically bad.
The recent data in addition show that elimination of HCV decisively ameliorates
quality of life, whereas mental and physical health get increasingly
worse with progressive liver disease and unsuccessful antiviral
therapies."

[Lilla]

I treated for 24 weeks (geno 2b/VL was 1.8 mil); For the most part, I felt fine pre-treating.  Felt fairly well for first 3 to 4 weeks into treatment, but then it was a gradual downhill slide, with emotions flaring up all the time, which definitely didn't help.    I am now 7 weeks post Interferon free, and 6 weeks free of Riba.   I have to say I feel "so good", and better each day.    Perhaps that is because I felt like $%!@ while treating, and I will never take feeling good for granted again.

[drofi]

moved from the other forum:

Jim,
where did I tell you, you should not post your opinion? Please don't feel personally offended from another opinion. Go on, post whatever you want. I will do for sure.
My point? I am getting sick of postings weeping around about tx, while I see more  and more people passing away from the virus, while none from Tx.

[jmjm530]

And I'm getting sick of comments like yours that misconstrue what I and others say. Please tell us how many with little or no liver damage "pass away" from hepatitis c.

[drofi]

please relax. We are closer than it seems to you.
You know that many do not even notice to have hep C for many many years. The percentages of people getting cirrhosis from hep C are well known. I just do not have the numbers at hand, not more than about 20% after 30-40 years of infection? How many get HCC after 30-40 years of HCV? a chance of 5% per year? We can google this, if the numbers are important. However, the damage of the liver is not linear, or is it? Nobody knows which comorbidities he/she will get in a few years. Which treatment will be needed then, e.g. analgetics, will they harm the injured liver? It is just difficult to make decissions on the grading and staging only. We do not know our future, but we know some prognosis factors to have SVR quite well today. One is time to start treatment after infection. The chance to get SVR decreases with each year of waiting.
Take an extrem example: If one has an *acute* infection with HCV (of course grade 0 stage 0), the chance to develop a chronical infection is about 50% without any treatment, but less than 1% if the person is treated with IFN (mono, no Riba) for 24 weeks at once.

Be well, drofi






Back to the exact question: The chance to

[drofi]

sorry for the bad layout of the posting, I clicked to early. It is already late here. I will be back tommorrow. have a good night..

[jmjm530]

drofi: The chance to get SVR decreases with each year of waiting
-----------------------------------------------------------------------------------------
This is simply incorrect and based on older information and is very misleading for anyone trying to make a reasonable treatment decision.

All else equal, all stages  (except stage 4) have an equal chance of SVR. Of course, acutes have the best chance, but very few people are aware they have Hep C in the acute stage.

[pigeonca]

As I understand it, Telepravir is being tested on people with genotype 1 because they need new and improved meds more than we geno 2's do, but that it will eventually be useful for all genotypes.

[sfbaygirl]

I agree,  that the two sides of the forum don't work so well. I do like the more casual nature of the community and the seriousness of the other side,  but it is crazy making when we get the same topic on both sides.  Maybe we can tell people to post on one side or the other with the same question.

[pigeonca]

I just checked Vertex's web site re. geno 2 and 3 and found this:

“While genotype 1 accounts for the majority of hepatitis C cases, the proportion of those living with genotypes 2, 3 and 4 is significant,” continued Dr. Alam. “In this in vitro study, telaprevir demonstrated similar potency against the NS3-4A protease derived from those patients with genotype 2, 3 and 4 to the in vitro results demonstrated with telaprevir in genotype 1. These results support our plans to begin to study telaprevir in genotypes 2, 3 and 4 in 2007.”

So I still believe that - had I known then what I know now (the eternal conundrum) - I'd wait for Vertex or something like it as a 2/2/2.

[mremeet]

It's late here, but I just wanted to quickly say that I know you've never tried to dissuade anyone with serious liver damage to postpone treatment. You've always been careful about qualifying that statement, and in general I agree with your assessment that it's best to consider waiting for better drugs in the event you have the luxury of waiting. And at this point, I think most all of us agree that telaprevir is definitely worth waiting for (again, assuming F2-F3 or less fibrosis).

You're a supersmart guy and have helped many here, we all owe you a debt of gratitude for that. I just sense this little debate is getting a bit too personalized. No need for it to be, my only point was to put a face and a voice on the possibility that there can indeed be at least a partial resolution of hepatic symptoms for a significant percentage of SVR's (albeit not all SVR's). That particular question has been very important to me since I was diagnosed 10 years ago. And I was always frustrated that I couldn't ascertain if there were a decent number if people out there that were better off after SVR-ing - and I mean symptom wise, not just a cessation of fibrosis progression. That's why I feel compelled to state my case, early and tentative as it may be. It wasn't meant to be a dismissive counterpoint to your experiences or anyone elses. I think you already know that, but I just thought I "say it out loud" for clarity's sake.

[meki]

I think I'm getting better off with SVR.

I feel like I'm 80% of what I was 2 years pre tx *keep in mind - 2 years before discovery - I started getting VERY SICK*

Compared to 3 months pre tx --- I feel about 40%above and better NOW - 7 months post tx than I did the 2 years before TX...  Meaning to say I feel better NOW.. than I did 2 years prior to TX... 40% above and beyond that... in fact.

I believe I'm going to get 100% better --- factoring in age --- and maybe some side effects.... But I believe it to be worth it...

I don't know if I could do it again... and I don't know if --- knowing how I felt for over a year --- if I would have the strength to do it in the first place... But I think it was worth it for me.

Each person is going to react differently.

I believe whole-heartedly that the genetics of each individual is what determines the outcome - the compatibility - the ability to make more immunities work harder --- how the treatment affects you - etc.

Just my take on it.

This is a personal decision --- much like any chemotherapy... This is an intimate disease... and an intimate decision to make.

Hugs to all.

Meki

[Valtod]

I'm sorry if you concluded from my post that Marie Antoinette was clueless and ignorant, and hence Mre is like her too. I think it's quite clear from the rest of my post that my point is that we all (including me and Mre) are affected by psychological, cultural and social bias for unrealistic and even irrational favoring of positive outcomes. That's why I referred to the book "Never Saw It Coming: Cultural Challenges to Envisioning the Worst".

I don't think Marie Antoinette (or Jim, Mre or I) was ignorant. She was quite intelligent and well-educated for her time. But her judgment was biased by her existential circumstances. Actually, this was precisely Mre's argument against Jim when he wrote:
"Whether you realize you're doing it or not, you are doing it (i.e. being somewhat selective in your referencing in a manner that generally bolsters and validates your personal sentiments/experience on this troubling and emotional matter)."

However, ironically, he doesn't seem to notice that the same argument applies (and to a greater extend, as I tried to suggest) to his own assertions.
Mre's statements boil down to this:

1. Online polls are not scientific (because they're not a random sampling and do not include control groups).
2. Mre feels great (he's an optimist), while Jim doesn't feel great (he's a pessimist).
3. Pessimists are overrepresented and they cherry pick data to prove their agenda.
4. Optimists (like Mre) are underrepresented because they "have a bigger fish to fry".
5. Jim (and probably many pessimists) advance their favored, created ad hoc, hypothesis, not necessary to mislead, but because of their psychological bias.

Online polling, as any other set of data, including informal interviews and personal records, can be and is a valid source of scientific discourse and conjectures.

"They are not a true *random* sampling of all people within the general population with HCV who have or have not treated successfully." This is a fallacy of scope.  Neither the pollsters, nor anyone else claims that this is a sampling of GENERAL population. Obviously, the scope of the sampling is much narrower; however, within its scope, it IS random.

For example, we have a study of HCV G1 patients on SOC with a SVR rate of 57% (Ferenci). However, this "general" population (which is general only in the scope of this study) can be split in 3 distinct groups (non-responders, early and delayed responders) with SVR rates 0%, 80% and 37% respectively. The results from these subgroups are still random samplings within their narrower scope and as "scientific" as the whole study.

The argument that the lack of control groups somehow invalidates a study is a false dilemma. The study in the example above does not involve control groups, treated with placebo, and still provides very valid and scientifically relevant information by examining the relation between time of viral response and SVR rate.

The same holds true for the SX Survey, which Mre attempts to invalidate in order to advance his own ad hoc "explanations". It provides the dynamics of whole set of symptoms/SX in time - before Tx and post-Tx at 6 months, 12 months and beyond. (Actually, the pre-Tx baseline symptoms can be considered a control group space.) For example, we can see that skin problems do not really fade away after Tx - 39% at first 6 months, 28% at first 1 year, and still 28% after that. Or, that join/muscle aches get worse during the first 6 months post-Tx compared to pre-Tx ("control" group), then it takes more than an year to get back to pre-Tx level but not better (52% to 63% to 53%).

This Forum can also be used for some useful data mining, as Jim suggested, as far as you define well your scope and cut-off values. For example, trying to show that the relapse rate for 72-week extenders may be no worse than 1 out of 3, I wrote elsewhere: In this Forum, all 8 known 72+ weekers between 10/03 and 2/07 are SVR now. This may look not very reliable, but someone has to find at least 4 unknown extenders in that period - and ALL of them relapsers! - to get numbers worse than Ferenci's.

Bottom line is that online polls and even forum data mining CAN provide scientifically valuable data, even if does not serve someone's personal agenda. So there is nothing inherently wrong with the data. Obviously, additional, broader and more precisely conducted studies would provide a better foundation for hypothesis fine-tuning or falsification. But at this point, Mre can not provide such data. (And I kind of doubt this is only because he has a "bigger fish to fry".)

[Valtod]

Mre's second line of argument is that even if the data is fine, the "pessimists" (Jim and others) interpret it in a wrong way - "cherry picking" and ad hoc generalizations. And Mre's own ad hoc logical fallacy goes more or less like this:

The pessimists are overrepresented because they're weak, vocal whiners, who have nothing better to do - potential or real losers. On the other hand, the optimists are the underrepresented "strong, silent types", who conquer the existential circumstances and move on to greener pastures - potential or real winners. Quite telling use of metaphors too: people anonymously (and most likely honestly) reporting their post-Tx SX are a "selective herd of people", or the guy in wheelchair "bemoans" his pain, while you can "walk and run just fine and feel great" but have "to keep your fat trap shut for obvious reasons" (political correctness?).

This kind of reasoning may sound good and self-evident in certain ideological echo chambers, but unfortunately is not supported by the modern cognitive science, psychology and sociology. As I wrote earlier, we all are affected by psychological, cultural and social bias for unrealistic and even irrational favoring of POSITIVE outcomes. And especially in the USA, the cultural and social pressures push these attitudes even further.

Based on such research, I can propose an alternative hypothesis.
The pessimists tend to suppress expressing negative thoughts or experiences, hence remaining underrepresented, because of any or all of the following:
* Their own denial - they know they pulled the short straw but can not admit it publicly, because of their own psychological bias to envision only best-case scenarios.
* The stigma of "not being successful" - culturally enforced and deeper than the "HCV stigma" (discussed elsewhere).
* Psychological projections - unacceptable outcomes can happen only to others.
* Peer group pressure - you must project optimistic outlook, or else leave the group.
* Depression - negative outcomes cause or worsen depression, which decrease motivation for social contacts and communications.
* Health problems or lack of energy - the negative outcomes may be severe SX (or even death), which effectively prevent meaningful social participation.

On the other hand, optimists tend to be more active, socially dominant and, hence overrepresented, for the opposite reasons.

These tendencies can be viewed as an adaptive equilibrium: people, who often envision or experience negative outcomes, are pressured and subdued by negative feedback, while their counterparts, who mostly envision and experience positive outcomes, are reinforced by positive feedback and fill the common social and cultural niche with their louder voices and more animated presence.

As you can see, this alternative hypothesis suggests precisely the opposite dynamics to the ad hoc explanations, offered by Mre. And unlike Mre's paradigm, it's based on some scientific assumptions, instead of just "common" sense, folk-sociology and intuitions.

Now, of course, which of these models applies better to the SX Survey and the HCV Forum remains to be verified or falsified. Nevertheless, the main SX Survey finding -only 1 in 3 has better QOL post-Tx - seems consistent with the Forum data (as Jim suggests) and probably can be generalized for even wider scope of post-Tx people, since a hypothetical pressure for overemphasizing the negative outcomes would be countered by (possibly stronger) tendencies for suppression of such "unpleasant" experiences being expressed and quantified.

Mre's arguments, based on common fallacies and "common" sense intuitions, do NOTHING to falsify such an inference (even IF it turns out to be indeed wrong).

[Valtod]

My opionion on these issues is not formed today, after I finished a 72 weeks Tx. Here's one of my postings from 9 months ago:
----------------------------------------------
It's only human to seriously overestimate your own chances of success. Evolutionary psychology and cognitive science say this psychological trait might have evolved in our ancestral environment when real chances of survival were slim and some mechanism of self-delusion were necessary for performing high-risk tasks (hunting dangerous animals, tribal warfare, crossing harsh territories, etc.)

In current psychological tests, students were asked to evaluate their own and their peers chances of successful outcome (owning a home, being happily married, having successful career, not being alcoholic or terminally ill, etc.) in the next 5 or 10 years. Most of the subject evaluated their OWN chances unrealistically higher than those of their peers.
So "wishful thinking" is part of our psychological makeup.

The most serious flow in all arguments for treatment "NO matter what!" is the lack of realistic cost-benefit analysis of the situation. The slogan is basically "You have nothing to lose, but everything to gain". Hence, invoking the "Lottery metaphor" - even if chances for success are slim, the benefit is huge (millions of dollars!) while the cost is almost zero (few bucks).

I'd propose a more realistic metaphor - "Russian roulette with only conditional chance of success". You shoot yourself in the head, hoping there are more empty chambers than rounds loaded in the revolver. Then, IF you survive the first stage of the game, you throw dices to determine whether or not you win the coveted reward (let's say millions of dollars). Additionally, you suspect that - EVEN if you survive and win both stages of the game - you may be cheated and paid with fake money, or just kicked out of the joint empty-handed.

Obviously, many people play the Lottery - NOT because of the high chance of success, but because of the very LOW cost for participation. On the other hand, only extreme adrenaline junkies opt for the Russian roulette. The chances of success here are much higher than the Lottery; however the cost may also be ENORMOUS.

We're all fascinated by extraordinary individuals willing to take high risks - that's why the movies and the books are full of them. But in reality, when applying - consciously or not - some form of cost-benefit analysis, a low risk (boring) behavior may be preferable. Especially in complex situations with highly uncertain positive outcome.

[Proactive]

I believe it is important to remember just how small a sampling our forum really is..I asked my np last week, how many patients she was following who were actively treating, answer was 95. This is just one med center in the US and yet their active number of tx'ers is higher than those represented here..And to suggest that we are not a selective group, i.e., posting on public forums, researching, questioning our docs- heck, following our own treatment, is a stretch of the imagination, IMO..

[Proactive]

I also believe we can not underestimate the effects of group mentality/dynamics at play here on the forum in helping to form our opinions/answers to survey questions...Some are dominant, some are submissive, some are articulate, some (like myself) are not..All these factors come to bare in our opinions/responses we express here...(we can see it here on this thread).
Looking at it statistically ( valtod can add more here) our collective group should probably be tossed out of any survey as contaminated..

[drofi]

Good Morning Jim,

before I come back to the scientific questions, please accept my honest appreciation for all your good work. It is not my nature to tell everybody each time, when I agree with you, and this happens nearly always.

You wrote:
drofi: The chance to get SVR decreases with each year of waiting
-----------------------------------------------------------------------------------------
"This is simply incorrect and based on older information and is very misleading for anyone trying to make a reasonable treatment decision.
All else equal, all stages  (except stage 4) have an equal chance of SVR."

Here is an international publication from 2007 about this. 2007 is not "older."

All the best, drofi

Scand J Gastroenterol. 2007 Feb;42(2):247-55.

Prediction of sustained virological response in chronic hepatitis C patients treated with peginterferon alfa-2a (40KD) and ribavirin.
Foster GR, Fried MW, Hadziyannis SJ, Messinger D, Freivogel K, Weiland O.
The Royal London Hospital. London. UK.

Objective. Patient- and virus-related factors influence the response of patients with chronic hepatitis C to interferon-based therapy. The purpose of this study was to model the probability of achieving a sustained virological response in individual patients, taking into consideration various predictive factors.
Material and methods. We combined data from two randomized, multinational trials in which patients received peginterferon alfa-2a (40KD) plus ribavirin. The logistic regression model for patients infected with hepatitis C virus genotype 1 included age, viral load, histology, alanine aminotransferase quotient, body mass index, treatment duration, ribavirin dose and adherence.
Results. In the genotype 1 model, varying baseline factors had a striking effect on the probability of sustained virological response. A dramatic difference in the probability of sustained virological response was seen in a series of hypothetical patients in whom five factors were varied to represent best and worst case scenarios. The best case scenario (age 20 years; no cirrhosis/bridging fibrosis; alanine aminotransferase quotient =7; body mass index 20 kg/m2; viral load 40,000 IU/mL) was associated with a 97% probability of sustained virological response, compared with 7% in the worst case scenario (age 60 years; cirrhosis/bridging fibrosis; alanine aminotransferase quotient =1; body mass index 30 kg/m2; viral load 9,000,000 IU/mL). Both adherence to treatment and achieving an early virological response increased the probability of sustained virological response.
Conclusions. In treatment-naive patients with chronic hepatitis C, host factors play a major role in determining treatment outcome and the logistic regression model is useful for predicting the probability of sustained virological response in individual patients.

[returntosender]

I think that for an SVR the analysis of tx and sides becomes less personal more theoretical once the virus is gone - (not including the always entertaining analysis of whether it is in fact it is gone.lol) I guess what I mean goes back to what I have said before about living with the virus and with tx for so many years.   I think that losing the virus has its emotional baggage as well.   While I realize that not all sides come from my head, I do realize that I have become quite the professional patient.   I dont know anyone who pays as much attention to this health as I do.  I dont know anyone my age who goes to as many docs or takes as much medication as I do.  Does this heightened state of awareness come from need or from habit.  Does coming back here and reading these various posts help or simply add to the anxiety and feeling of dread?   I know how much these feelings added to the negative tx experience.  

I guess what I am saying is that if I wasnt SVR I would be treating or getting ready to treat.   I wouldnt be worrying about how bad I would feel when I was cured.  I NEVER believed it would work anyway because it (tx) usually didnt.  Times are changing however and new things are on the horizon but new things have always been on the horizon.  I treated when I found out I had the virus.  I treated again after that failed.  I treated again after that failed.   I finally treated and it worked.  If it didnt, I would treat again.   I wouldn't think about it for a minute and I am and have been stage 2 throughout this.  I think I stayed stage 2 because I treated.   A friend, my best fried, died a couple of years ago.  He never treated.   The other folks I know who dont treat seem to be fading - just my opinion.   Only once did I wait for tx, in retrospect it was the most awful period in my life.   I needed to be doing something about the virus - taking action.   I guess there are a variety of actions you can take but the combo was the action that got rid of it.   I love the fact that I can analyze this whole thing from a bit less scary of a position - it is quite a luxury after all these years.  On some level I dont feel I deserve it and am not convinced it is real - therefore my post tx sides serve as some sort of continuing payment for that which was so graciously and wonderfully given to me.  How that adds to all this I have no idea.  

[jmjm530]

Good morning as well Drofi and thank you very much for the nice words.

Here is what the benchmark Win-R study had to say on this issue. It appears that the point in discussion is more specific to Win-R.  I also might add that this same point was related to me as early as last year by someone who runs many of these major trials. Again, not having full-text of both studies in front of me, I won't debate whether bridging fibrosis is a negative predictor -- although again both Win-R and a very eminent hepatologist told me it wasn't -- but the drift here (not picking on you btw) is often the general statement that the earlier you treat, the better your chance of SVR. This simply isn't true and I feel leads many people to incorrectly weigh the risks and rewards and therefore possibly make the wrong treatment decision for themselves.

From Win R:

"...In conclusion, the authors write, “WBD of RBV is important to increase SVR in patients with more advanced stages of liver disease. However, overall only cirrhosis is a negative predictor of SVR when individual fibrosis stage and SVR is evaluated.”"

http://www.hivandhepatitis.com/2006icr/ddw/docs/052306_e.html

---------------------------
Valtod,

Very well done, and I shall take a look at the book you appear to be recommending. If I may ask, what line of work are you in?

I do understand why you place me as "pessimist" within the confines of this discussion, but outside of Hep C, I consider myself quite an optimist. Let's just say that the interferon (knowledge and personal experience) has made me into what I consider a realist.

I'll add a couple of more reasons why we "pessimists"/realists may be under represented. First, self validation -- I did it (treated, so it must be the righ tthing to do since I'm a smart, rational individual who makes smart, rational decisions. And second, the ability to rationalize what others might consider serious consequences of tx, i.e. sure I screwed up my entire QOL, but it was worth it because I'm not going to die of HCC or liver failure -- as if that was a forgone conclusion in many.

Thanks again for your input.

-- Jim

[jmjm530]

Bringing the above discussion down to the level of treatment decisions and advice here on the forum. What I'm trying to say is that I don't think people are being done a service when advised "the earlier you treat the better your chance of SVR" which while of course has elements of truth, grossly oversimplifies the situation with what is generally a very slow moving disease. It also fails to take into account drugs like Telprevir which are already demonstrating double the SVR rate. So is waiting longer (for the new drugs for example) really decreasing your odds of SVR or perhaps could it potentially be increasing the odds? I'm not trying to toot my horn here, but I try when possible, in addition to my opinion,  to lay out the complexities of the treatment decision. To parapharse an old expression -- the truth is in the details.

-- Jim

[Valtod]

When I reread now what I wrote late last night, I agree that the pessimists/optimists opposition is not the best choice of words. I started with them when I was talking about our innate optimistic bias (wishful thinking), which should be countered with some rational (realistic) considerations, especially in any serious decision-making process. But in the rest of my post, where I deal specifically with improved vs. lost QOL post-Tx, the optimists/pessimists labels do not work so well.

I also considered myself an optimist - at least until the depression during Tx really started kicking in. In fact, although I'm a very rational person, I made some bad business and financial decisions in the past because of my own bias in expecting positive outcomes (at least for me :-) Perfectly rational agents making irrational decisions - I've been interested in this issue for many years.

I have a degree in Physics. I've worked in different fields and businesses where proprietary computer systems and computational modeling are involved. Now, because of HCV and the Tx, I only work part-time as consultant. I've always been curious and have many (probably eclectic) interests.

Here are some books that inform and influence my views:
Modeling rationality, morality, and evolution
Complex adaptive systems: Computational models of social life
Choices, values and frames
Evolutionary origins of morality
The innate mind: structure and contents, culture and cognition
Deep simplicity: Bringing order to chaos and complexity
Into the cool: energy flow, thermodynamics and life
In gods we trust: the evolutionary landscape of religion
The stag hunt and the evolution of social structure
The emotion machine: commonsense thinking, artificial intelligence and the future of the human mind
Economics as Religion: from Samuelson to Chicago and beyond
Origin and evolution of cultures
The logic of failure: recognizing and avoiding error in complex situations
Propaganda and the ethics of persuasion
Collapse: How societies choose to fail or succeed
Philosophy in the flesh: The embodied mind and its challenge to Western thought

Best regards!

[mremeet]

Well that was certainly a lengthy post filled with all sorts of interesting observations, statements and conclusions. I’ve apparently really hit a nerve with you, and being that you’ve fairly recently wrapped up 72 weeks of treatment (according to your profile) I guess hitting nerves is still pretty easy to do at this point in time. As far as the voluminous content of your various posts, I’ll just hit the highlights where you seem to be actually speaking for me or about me to dointime:

Valtod quote: “But her judgment was biased by her existential circumstances. Actually, this was precisely Mre's argument against Jim when he wrote:  ‘Whether you realize you're doing it or not, you are doing it…’ However, ironically, he doesn't seem to notice that the same argument applies (and to a greater extend, as I tried to suggest) to his own assertions.”

You’re wrong, my comments were not “precisely” an “argument against jim” and your silly and nonsensical analogy between myself and Marie Antoinette is, to be kind, not well thought out. Jim here has repeatedly over and over again (on several threads) made the implied or outright claim that an HCV+ person is more likely to come out of successful treatment (i.e. after achieving SVR) either feeling worse or feeling the same compared to how they felt prior to treatment. In other words don’t look to an SVR as being able to resolve extra-hepatic symptoms commonly associated with a longstanding chronic HCV infection. Jim said in just this thread alone:

“What that means is that around 2 out of 3 people felt either worse or no different after treating. This should be a reality check for those who treat primarily because of the so-called extra-hepatatic symptons, i.e. to feel better. This study and anecdotal reports here suggest you will not feel better after treatment…where I come down is that the primary reason is to regress or stop liver damage with the trade off that you probably will feel no better after treatment, possibly even worse…If you're lucky you come out feeling the same. If not, you come out worse.”

So the soup du jour here is jim’s repeated and fairly emphatic stance that if you are chronically infected with HCV and are experiencing extra-hepatic symptoms, in all likelihood after SVR-ing you’ll either feel worse or the same as you did prior to treating. There will probably be no resolution of your extra-hepatic symptoms, you will probably not feel better after getting your SVR. And the reason jim suspects this is true is because that’s what happened to him and that’s what he’s observed others saying here and now that’s what this survey is suggesting. Well, the specific intent of my responses here were (1) to make the obvious and true point about the very questionable legitimacy of the substantiation that jim references and discusses. And more importantly (2) to directly provide a seldom heard counterpoint that I strongly suspect is grossly underrepresented for the reasons previously stated (especially on internet forums like this). Y’see, I am one of the people who didn’t feel good prior to treatment and haven’t felt well for a long, long time as a result of HCV. I know that many who are infected say the virus doesn’t bother them, but for myself and many others, it does (or did). So it’s important to know for the symptomatic folks (as it was for me 10 years prior to treating) if there’s a good chance that there could be a resolution of HCV related symptoms after achieving SVR. THAT’S why it’s worth talking about, and THAT’S why I responded with my statement. Not to express personal bias or attack jim or unfairly denigrate those who do feel worse after treatment (even if SVR is achieved).

Valtodquote: “Mre's statements boil down to this:  1. Online polls are not scientific (because they're not a random sampling and do not include control groups).”

No, I didn’t state that all online polls are not scientific. If you have trouble understanding what I said, then I suggest re-reading what I did say. And if I haven’t spoken clearly on something or you need clarification, then simply ask. Please don’t say I said something that I did not, especially if it’s unreasonable or obviously wrong. Can you say “straw man?”

valtodquote: “2. Mre feels great (he's an optimist), while Jim doesn't feel great (he's a pessimist).”

Just because I feel great doesn’t mean I’m an optimist. And just because jim doesn’t feel so great, that doesn’t mean he’s a pessimist. You’re taking a silly and wrongheaded tack here. But while we’re on the subject, a pessimist is someone who always predicts or expects the worst outcome. An optimist is someone who always predicts or expects the best outcome. Optimists and pessimists are always looking to the future and deciding what that future may hold for their respective selves. Both of us are no longer anticipating the future or what its outcome may be any longer (be it good or bad) when it comes to the issue of SVR and QOL post tx (although I’m still too close to the starting gate for a fully fleshed out opinion just yet). So both jim and myself are simply reporting what we are actually experiencing NOW. We’re not providing a forecast of how we think we’ll feel after achieving SVR, we’re simply telling you how we DO feel as in right now, real-time. Gettit Freud? Furthermore, isn’t it possible that when someone says they feel good, they actually…hold on a sec here…might actually, truly, honestly and legitimately feel good? And isn’t the reverse also possible? Someone who says they don’t feel good, actually sincerely means it and is not some kind of “ist”, where they either have a non-factual emotional slant one way or the other?

Valtodquote: “3. Pessimists are overrepresented and they cherry pick data to prove their agenda.”

This isn’t my point and again the whole optimist/pessimist thing is wrongheaded, illogical and is not what I was saying (that’s why I never mentioned optimists or pessimists in my original statement).

Valtod quote: "Online polling, as any other set of data, including informal interviews and personal records, can be and is a valid source of scientific discourse and conjectures."

Sure, you can use informal interviews, personal records and “any set of data” to make conjectures. You can also use the Jerry Springer show, the Enquirer and what your neighbor said down the street. You can use whatever you want, but you’re wrong to assert that you can assemble some kind of hodge-podge assortment of “data” based on online polls and opinions and produce something that would hold water during any real scientific inquiry or “conjecture.” And what is conjecture anyway? Oh that’s right, it’s…well, it’s just conjecture, isn’t it?

Valtodquote: “ (mrequote)They are not a true *random* sampling of all people within the general population with HCV who have or have not treated successfully."  This is a fallacy of scope.  Neither the pollsters, nor anyone else claims that this is a sampling of GENERAL population. Obviously, the scope of the sampling is much narrower; however, within its scope, it IS random.”

You’re wrong, it’s not a fallacy of scope.  To reiterate what my original response to jim was about, it’s about jim’s repeated assertion that those who SVR usually either feel no different or worse after completing treatment. And jim referenced the study as a part of his substantiation that this is true. So my quibbling with the scientific legitimacy of the online poll isn’t with the pollsters per se, it’s with jim’s use and interpretation of it as a partial buttress for his post tx “I feel bad” supposition. (cont...)

[mremeet]

Valtodquote: “Obviously, the scope of the sampling is much narrower; however, within its scope, it IS random.”

You’re wrong again. This poll is not random, even within its scope. Let me tell you a quick story: I’m a gun owner and a gun rights advocate (although I don’t picket, demonstrate or own a bullhorn), and I was hanging out in a pro-gun internet forum some time ago. I noticed there were certain members who would always troll the internet looking for polls that concerned second amendment gun rights within the Unites States (and even elsewhere too). And when they found one, usually a newspaper poll, they would immediately alert all the members about it and post a link to the poll. Of course we all went to the polls in droves and happily filled it out to our liking. These poll references would spread like wildfire to similar pro-gun forums all around the world. It was very common to see results skewed 80-90% in favor of gun rights (or even more in some cases), including the right to carry concealed weapons (for law abiding citizens). Now, generally I believe the majority of US citizens do believe in our right to bear arms, and I’d like to believe that 90% of US citizens believe that we should all be able to carry concealed weapons. But guess what?? I have to admit that I honestly don’t think that anywhere near 90% of US citizens believe that guns should be legal and certainly not that ordinary citizens should be allowed to carry concealed weapons (even if they did pass all of the screening and qualifications).  Do you have any idea why these types of polls can produce numbers like this? How do you think this online phenomenon interlaces with your claim that these polls are random? This kind of stuff can also happen in non-online polls too. Does everyone remember what happened in the 2004 US presidential election when exit polls called it for Kerry by a significant margin? Why did that happen? Because the people responding to and participating in the exit polls were not randomly sampled. They were inadvertently selectively sampled, largely because Kerry voters were more disposed to walk over to exit pollsters and answer questions. Probably because they were more disgruntled than Bush voters, which again ties in to why disgruntled people are more likely to go out of their way to speak up on whatever issue is the source of their “disgruntleage”.

Oh, and of course there are many others factors to consider too. Some online polls allow repeated voting, over and over again. Even those that use an IP identifier and attempt to preclude any one person from voting more than once can be duped using free proxy servers or other techniques (just a matter of learning those techniques, it doesn’t cost anything). Also, how do you really know the person voting is a bonafide member of the community you wish to sample? With most online polls (like the one referenced) you don’t, do you? The person voting can be anyone, and the data they’re filling out could be completely meaningless, other than having the capacity to mislead. And none of this gets into a myriad of other factors like how the questions are parsed, what questions are asked (and not asked), the surveyor’s bias, motivations or why they wish to conduct the poll in the first place. The list goes on and on, I could pick this poll apart with a fine-toothed comb and come up with a laundry list a mile long. Take my advice, don’t attempt to interpret or color this poll as even partially scientific or randomly sampled – it’s not.

Valtodquote: “The argument that the lack of control groups somehow invalidates a study is a false dilemma. The study in the example above does not involve control groups, treated with placebo, and still provides very valid and scientifically relevant information by examining the relation between time of viral response and SVR rate.”

You’re wrong, the lack of a control group is a very significant obstacle in understanding the results of this poll. And by control group, I don’t mean a parallel group who took a placebo for 48 weeks alongside treating patients, although certainly that would be ideal. What I mean is to randomly sample a large number of ordinary people who have never had HCV and have never been exposed to IFN/riba. And sample people who are from a similar racial/socioeconomic/educational class within the same age categories. If you did, I’m pretty confident you’d see many within that group answer QOL questions in a manner that would fairly closely mimic the results observed from many of the long term SVR’s. Speculation on my behalf, but now that I’m in my 40’s I see how my non-HCV friends are starting to complain of aches and pains and fatigue.

Valtodquote: “Bottom line is that online polls and even forum data mining CAN provide scientifically valuable data, even if does not serve someone's personal agenda. “

It might be possible to extract good data from online sources, I never said it wasn’t possible (so again, stop putting forth your straw man argument that I did). And I have no personal agenda here Valtod, other than to get well, to learn and help others when and where I can. But speaking specifically on (a) the posts that jim has selectively referenced and (b) the poll referenced in this thread, these two sources of “data” are not scientific and provide a weak and unsubstantial foundation upon to build your house. If you don’t have the scientific acumen or clear headedness to understand that, then it’s time to step back and re-think things.

Valtodquote: “So there is nothing inherently wrong with the data.”

Yes there is, there’s a lot wrong with “the data.” [see above]

Valtodquote: “Obviously, additional, broader and more precisely conducted studies would provide a better foundation for hypothesis fine-tuning or falsification. But at this point, Mre can not provide such data. (And I kind of doubt this is only because he has a "bigger fish to fry") “

Oh, I see…so now it’s up to me to provide “the data” to substantiate the post-treatment feel good/don’t feel good breakdown? And if I don’t provide that data, I’m a bad guy because I can’t get everything nice and settled for everyone. And since we can’t know with certainty what the situation truly is, that’s very frustrating. Not knowing, or being left in a state of ignorance, that is…frustrating. And since it is so frustrating, well then…we’ll just go ahead and “use what we got” to forge ahead and just “know” anyway. Lets get this matter settled so we can move on to other things tout de suite because we ALL have bigger fish to fry, now don’t we? Oh, and I really like your statement that I’m deliberately withholding “the data” because I’m too busy sauteing my sea bass. You’re right, I’m holding it back because of my devious ulterior motives here. Please, continue with your dissertation, at this point I think I’m not the only one enjoying it.

Valtodquote: “Mre's second line of argument is that even if the data is fine, the "pessimists" (Jim and others) interpret it in a wrong way - "cherry picking" and ad hoc generalizations.”

Oh, my second line of argument is that even if the data is fine (which I certainly never said), jim the nasty PESSIMIST interprets it the wrong way ehh?  Keep those straw men coming, soon enough you’ll have enough for a straw house.

Valtod quote: “And Mre's own ad hoc logical fallacy goes more or less like this: The pessimists are overrepresented because they're weak, vocal whiners, who have nothing better to do - potential or real losers.”

Wow I didn’t even realize I had called everyone weak, whining losers. That’s funny how you so craftily intuit what I *really* mean when I post a comment…and then tell both me and everyone else what I really meant. Thanks for that service. Tell me, have you looked into being screened for special ESP or psychokinetic abilities? I think you might have a natural talent for it. (cont...)

[mremeet]

Valtodquote: “On the other hand, the optimists are the underrepresented "strong, silent types", who conquer the existential circumstances and move on to greener pastures - potential or real winners. Quite telling use of metaphors too: people anonymously (and most likely honestly) reporting their post-Tx SX are a "selective herd of people", or the guy in wheelchair "bemoans" his pain, while you can "walk and run just fine and feel great" but have "to keep your fat trap shut for obvious reasons" (political correctness?).

Yeah, that was a telling use of metaphors wasn’t it? I guess your acute powers of ESP were able to look into my sentences and thereto into my mind itself and see what I *really* meant by that huh? Tell me Valtod, can you read my mind right now and see what I’m thinking? ;-) As you can see I always write one thing, but mean another. Maybe you can go ahead and use your powers of ESP to interpret and translate my writing for now on? And hey, I just realized your name “Valtod” sounds just like a circus mystic’s name. THE GREAT VALTOD-STEP RIGHT UP FOR YOUR FORTUNE!  Was that deliberate? If so, nice touch.

Valtodquote: “This kind of reasoning may sound good and self-evident in certain ideological echo chambers, but unfortunately is not supported by the modern cognitive science, psychology and sociology. As I wrote earlier, we all are affected by psychological, cultural and social bias for unrealistic and even irrational favoring of POSITIVE outcomes. And especially in the USA, the cultural and social pressures push these attitudes even further. As you can see, this alternative hypothesis suggests precisely the opposite dynamics to the ad hoc explanations, offered by Mre. And unlike Mre's paradigm, it's based on some scientific assumptions, instead of just "common" sense, folk-sociology and intuitions.”

Oh you’re so right great Valtod, my kind of reasoning is only supported within certain ideological echo chambers. Why I just left it in fact, and there were all these people with nasty rashes yelling into the ideological canyon “hello out there!!” and “hey, who left the milk out?!!” and then listening for how long it took for it to bounce back. Great fun, but I hear what you’re saying – many times over in fact! And thanks for your remaining fanciful description intimating you’re a member of an educated class of scientist’s who’s been forced to condescend to the little people. I think I’ve seen this before, usually it’s a sociologist or a psychologist who has a chip on their shoulder because they don’t get the respect they think they deserve because of the professional stigma of not being “real” medical doctors. Or the online variety of an ordinary person that implies the are a doctor without actually being one. Which one are you?

[jmjm530]

Thanks for your thoughts and reading list.

After drifting around in my early 20's -- in part attributed to 3 acute relapses and resulting fatigue of HCV, then called chronic persistent hepatitis -- I ended up at my old alma mata's 'career' office and took one of those 'what field should I go into' battery of tests.

To my surprise, physics and writing headed the recommended list. I thought both were wrong (never did all that well in math and was a bad speller) but did eventually end up a writer of sorts (marketing) and came to realize that spell checks take care of spelling (not here but at work) and good grammar is something that English teaches excel in and not writers.

Sometimes wonder what would have happened had I gone with Physics. Probably be thinking about that 30 million dollar prize Google is offering for some moon pictures :)

All the best,

-- Jim

[jmjm530]

Opps. That post should have been addressed to you, not Drofi. Both forums (and now people) are starting to meld together. Time to take a break and get some air. LOL.

-- Jim

[wyntre9]

hey,

i was just getting ready to post and ask WHAT you've been reading and as I scrolled down i saw you'd already listed some of the books.

Thanks.  I will check some of them out.

BTW, didya ever see that film:  "What the Bleep do We Know?"

wyntre

PS - where did you read this?

"t's only human to seriously overestimate your own chances of success. Evolutionary psychology and cognitive science say this psychological trait might have evolved in our ancestral environment when real chances of survival were slim and some mechanism of self-delusion were necessary for performing high-risk tasks (hunting dangerous animals, tribal warfare, crossing harsh territories, etc.)"

[wyntre9]

It looks like the test WAS right!

Your writing is eloquent and accessible and while you may not be a 'physicist'  by trade you certainly seem fascinated by the scientific process and its relation to human existence.

that comes through loud and clear in all your posts.

wyntre

[beamishboy]

the exit polls in Ohio were much more accurate than the  vote counting -Kerry should have won..

[pigeonca]

If everybody in Ohio who came to vote and was denied entry to the voting booth had been permitted to vote, Kerry most definitely would have won - and let's not even get into the issue of Florida in 2000.  We can argue that stuff for the next two hundred years - and probably will.

[sfbaygirl]

Hahhahahhahhhaaaa.  Such a serious subject and you made me laugh. Did you see Greenspan on 60 minutes Sunday nite?  I want to read his book.  Such a geek too. So glad to hear your news!

Love ya, Linda

[Valtod]

I didn't have time and energy to read the forum in the last couple of weeks, because of my post-Tx autoimmune problems. So yesterday I saw for the first time your long and quite nasty response to my post in the thread about the UK Post-Tx Survey. Just want you to know that I read it. I assume it would be impolite if the addressee does not get and appreciate such a passionate diatribe dedicated to him personally :-) Obviously, I found a lot of BS in it that is totally uncalled for. But that's OK. I guess my own post did **** you off enough to go off on a tangent.

My only purpose was to provide argument for some important (as I happen to think) issues as innate psychological, cultural and social bias for unrealistic and even irrational favoring of positive outcomes. This is especially important for our peculiar social group selected and marked by HCV, because we all have to make very difficult, costly and irreversible decisions in high uncertainty.

As I re-read my arguments, I still find them well-founded and valid (as I'm sure you find yours :-). My only regret is that I used the approach of deconstructing your post to make my point. I should have known better. I've been on the Internet since 1992 and I had my share of flame wars when I was 10 years younger. I never liked such a waste of energy and emotional engagement with cryptic nicknames and vague virtual presences.  

Nowadays, older and hopefully wiser :-), I usually try to avoid criticizing anonymous texts in a way that might be construed as a personal affront. Their authors in forums, usenet groups, chat rooms and even blogs are - with rare exceptions - indeed anonymous because you know almost nothing about their real flesh and blood personas in their real social, cultural, political and ideological context. They're just labels, strings of symbols, disembodied avatars, whose very narrow channels of textual output may have as real source anybody or nobody, or just a computer simulation for that matter.

To make things worse, a second layer of anonymity and inevitable fragmentation comes from the fact that the online forum texts and opinions are usually read, and often produced, out of significant or meaningful context. So, this tense asymmetry burdens most forms of online dialogue and relations:

1. When you respond to a text, you know - intuitively or rationally - that you're dealing ONLY with the given text, and NOT with the real person (if there is one) who produced it, or even with the possible FRAMEWORK of other text by the same author. And you sincerely believe this implicit assumption is transparent to everyone else involved in the exchange.

2. However, when you receive a response to your text, you immediately read it as a reaction directed at YOU with your whole REAL package of social, cultural and ideological background and the FRAMEWORK of your worldview. Because YOU know YOURSELF as a very real and complex entity - you are NOT just a piece of text.

The irony is that the object of your attraction or antagonism is as much a victim and a perpetrator of the same asymmetry of perception as you are.

It's kind of silly to imagine and attack personas where there are none - just pieces of text. You said it yourself: creating and destroying "straw men".

So, next time when I post a dissenting opinion in response to some text, labeled by the string "mremeet", please do not take it as a personal affront. I obviously do not know the real person behind the label, and actually if I have the chance to meet him in the material universe, I'll probably conclude that he's a real cool dude.

For my part, I'll try to phrase my opinions and arguments as non-confrontational and depersonalized as possible (or as much as I can :-)

Take care and enjoy your new-found health! Life is good when your body does what your mind decree... Ciao

[beamishboy]

greenspan NOW  admits that the iraq occupation is about 'the oil'.!!....i never agreed w/ the man or his economic philosophy/policys...he has no interest in common with my own-full employmnt at a good living wage-so i do not consider him the golden boy that wallstreet folks do...and hence will not be spending my hardearned sweat equity on his book.. i am glad i made you laugh..takecare&FAREWELL.....tommy
pigeonca-so many votes,such little accountability..i honestly believe that our elections are no longer honest..democracy my arse!

[beamishboy]

well said.....cheers

[mremeet]

Valtodquote: “So yesterday I saw for the first time your long and quite nasty response to my post in the thread about the UK Post-Tx Survey. Just want you to know that I read it. I assume it would be impolite if the addressee does not get and appreciate such a passionate diatribe dedicated to him personally :-) Obviously, I found a lot of BS in it that is totally uncalled for. But that's OK. I guess my own post did **** you off enough to go off on a tangent.”

Please, don’t feel obligated to respond, I won’t be offended. And based on what you say here, I guess you feel your initial (2) responses to me were polite, conciliatory and in keeping with rational scientific discourse (with you being the disseminator of the rationality, of course). They weren’t, and if you can’t understand that even now after re-reading your post, then all I can say is that either you’re a very irrational person in general, or you’re temporarily insane from the tough treatment you’ve recently wrapped up (and are still suffering from). I’ll assume the latter.

Valtodquote: “My only purpose was to provide argument for some important (as I happen to think) issues as innate psychological, cultural and social bias for unrealistic and even irrational favoring of positive outcomes.”

No I don’t think so. I think you said what you said because you’re NOT feeling good after treatment. In fact, you’re feeling very, very “UNGOOD.” And because you do feel very, very ungood, it irks you to no end to read about some irritatingly cheery person proclaim how good they feel after completing treatment. Especially if that person is taking strong issue with a common internet forum complaint regarding lasting post tx symptoms (which concurs with your experience at this point in time). You very obviously feel that my saying that is dismissive of how awful you’re feeling right now, and you don’t like that and have internally personalized it. So instead of coming out with such a raw and angry retort condemning what I said for that bare reason alone, you’ve tried to kludge together some kind of mish-mashed scientific theory in an attempt to dismiss such silliness (vainly). But again, that’s ok, you’re only human and after what I went through during my own treatment, I can certainly understand why you might feel that way…and I don’t take it personally (although it did irritate me when you first posted it, especially with you repeatedly speaking for me in an absurd manner combined with the lengthy and meanspirited ad homs).

And as far as your fanciful theory regarding how and why human beings always favor a positive outcome. While I understand what you’re attempting to get at, and I partially agree with it within certain contexts, I don’t agree that this phenomena is applicable to the situation we were discussing/debating (that being how myself, jim and most others SVR’s feel post tx). As partially explained in my last post, I’m not “favoring a positive outcome” when it comes to my post tx experience. My post tx experience is what it is, and I’m telling you what it is. I’m not forecasting what it will be with starry eyed optimism because I just want to believe everything will work out. I’m telling you real-time what it is. Furthermore, I’ve never overly-optimistically forecasted what my post tx experience would be prior to treating anyway (and I’ve known I was infected for 10 years). I educated myself and learned about the treatments that were available (both naturalpathic and traditional). I also educated myself about their efficacy and side effects - both short AND long term. I’ve spoken with many, many people who had gone through IFN+riba treatment for years and years and years prior to treating myself. So believe me I knew full well what I might feel like after treating. In fact, I actually expected on some level to feel like sh!t after treatment, perhaps permanently. And the proof I did feel that way is the simple fact that I held off treating for 10 whole years, I was scared to death of interferon based treatment. Far from being the starry eyed optimist, I was all too wary about what might happen to me. Similarly, in regards to this thread, jim also is explaining how he feels real-time. Not predicting into the future what he’s going to feel like prior to treating. And obviously he’s also not predicting a rosy positive outcome for others now, nor do I believe he did for himself prior to treating. So you’re way off base with this hackneyed positive outcome thing of yours when it comes to myself and jim and probably a whole lot of other people preparing to treat - give it up.

Also, just as a brief aside, if human beings were predisposed to this favoring a positive outcome when sizing up challenging and potentially life threatening scenarios, I don’t think that would bode too well for one’s natural selectability. “Look Zog, that lion is so cute and cuddly! I’m sure he won’t mind if we borrow a leg off his zebra!” or “Wow jim-bob, I’m realll hungry, those mushrooms there look delicious. I’m sure they’re ok to eat, lets have some!” There’s a strong argument to be made that human beings, like most animals, have an innate wariness and suspicious nature when it comes to sizing up something that may not be perfectly understood (when in a natural setting). And that wariness increases the lower down the food chain you go (and conversely decreases as you approach the top, although even there it’s ever present). And since human beings, evolutionarily speaking, have relatively recently only crested the summit of the food chain (even though our slow, weak, soft bodies are still well in the valley), we still instinctively retain our fear of lions, tigers and snakes. And since we do, we most certainly don’t always favor or predict positive outcomes, we often assume the worst or at least acknowledge the possibility of a bad outcome to be on the safe side. To do otherwise in a natural setting is often fatal, and that same logic can carry through in modern times too. And speaking for myself, I think I’ve know more cynics and pessimists in my life than starry eyed optimists. I think there’s good and sound reasons for human beings to have evolved a sense of wariness and skepticism and to NOT always expect the best outcome. (cont...)

[mremeet]

Valtodquote: “As I re-read my arguments, I still find them well-founded and valid (as I'm sure you find yours :-).”

As explained previously, I don’t think your “arguments”, or your ad homs, or your bountiful straw men were well founded at all. But that’s ok, you’re entitled to your opinion (as am I), and like I said I don’t take them personally considering where you’re at emotionally/intellectually right now (not yet anyway).

Valtodquote: “My only regret is that I used the approach of deconstructing your post to make my point.”

Don’t worry, you didn’t deconstruct anything. And since you didn’t deconstruct anything you haven’t done anything to be regretful about (other than the inappropriate ad-homs and straw men, you should be regretful of those of course).

Valtodquotequote: “So, next time when I post a dissenting opinion in response to some text, labeled by the string "mremeet", please do not take it as a personal affront.”

I won’t take it as a personal affront…probably. But leaving out a multi-post extravaganza of ad homs and straw men would go a long way helping to prevent that.

Valtodquote: “I obviously do not know the real person behind the label, and actually if I have the chance to meet him in the material universe, I'll probably conclude that he's a real cool dude.”

I might conclude you’re a real cool dude too, but first you’ll have to start acting like one ;-) .

Valtodquote: “Take care and enjoy your new-found health! Life is good when your body does what your mind decree...”

Now that’s something a cool dude would say, thanks. Hope you’re feeling better soon, and may you become the proud recipient of an SVR soon, too. Or am irrationally predicting a positive outcome?? ;-)

[jmjm530]

As long as this thread has been kicked up top again, let me again address the "cherry picking" issue and a few others.

You have stated that some, let's say "positive"  comments have been excluded from my above posted list of threads, including those by PLN, APK and yourself, as some examples you listed.

No doubt this is correct , because, unlike what you suggest, my list was not painstakinely (boy wish I had a spell checker for this) constructed, but rather  quickly constructed by simply choosing threads with titles like "post treatment symptons" that pop up from from time to time. For that reason, I'm sure I also missed many individual threads (not titled "post treatment sides", that had some positive sentiments, as well as some individual thread that had some negative sentiments.

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.

As to the survey. My contention was simply that the survey accurately reflected what I've read here over the past couple of years per the threads I posted. That was really my main point in the context of this discussion.

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.

Therefore, all we have are various "takes" such as yours, mine and  Valtod's, etc. All interesting, all I think with merit, but all unscientific -- but nor did any one of us state them to be.

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.

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. This has been mentioned by a number of people here as a reason why they stopped posting negative information.

Or, maybe what gets posted here -- and in what the survey shows -- does accurately reflect what's going on in the overall Hep C community.

I really don't know for sure, and unti we have some sort of scientific study done on this, none of us will know, but we will certainly not be shy about sharing our opinions :)

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.

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?

That's a thought I've had for some time and on a personal note, I felt pretty good prior to treatment (treated based on biopsy not how I felt) and showed up here for the first time one week into treatment.


-- Jim

[desrt]

2-4 pints/day "sometimes more" is one way to ignore anything that might be going on with you healthwise post-tx. Let your BAC drop beow .06 for a couple weeks and tell us how you feel.

[Willy50]

The origional point of this thread was to provide a sort of landscape to the results of people who have treated.  I wish that there were a good way to provide data that wouldn't get argued about so strenuously.  Whatever the results are we need to have them.  This is a VERY important topic and in all likelihood it will remain important for years.  Aside from this forum there are several current threads in other forums which deal with the long term sides which MAY follow treatment.  We all want to know if better days are ahead.  We ALL need to know what the outcomes may be before deciding whether to treat or not.

The pharmeceutical companies may not provide money for providing for studies on this topic.  Even if they did they would have a serious vested interest in certain outcomes for those studies.  I'm not sure that I would trust the "data" for instance from SGP or Roche.

The doctors whom treat us as a group basically often know little more than information which is provided to them by the Pharms or from data provided from studies.  I feel that they too have a vested interest in protecting the sanctity of the treatments which they provide.  How many people with sides have been dismissed by doctors? Maybe they get written off as malingerers, welfare scammers, hypochrondriacs or malcontents.  Perhaps it isn't all the doctors faults; there is not much data for instance on brain function.  Are some changes such as chronic fatigue or depression an issue with the brain or with the body?

Where then can one get data on such a topic?  Perhaps not from big pharma, or the doctors or from the medical community. (I know that I am painting with a rather broad brush here but generally that may be somewhat true since there is a distinct financial disincentive for doing studies which could prove moneymakers like chemotherapy to be unsafe).  I know that I am sounding negative about treatment.  I'm just saying that HCV monotherapy was a modern day miracle until a better treatment occurred.  When better treatments occur we may all ruminate about the deficiencies of this current treatment.

How can we provide enough information to the medical community so that they can be able to see that these are symptoms which occur in people who treat as a group?  I think that such a survey is a good start.  It may not be perfect; perhaps there are methods which such surveys can be inproved.  It is a START.  If a survey or group of surveys provides some compelling evidence ....then perhaps somone can begin to provide some framework for studies to better understand the issues involved with some of these sides.

By the way.....I have not treated.  I would be so ecstatic to hear that the vast majority of those who treat just regain their lives and feel better than ever.  I do hear that from some SVR's.  The people who do not end up that way deserve to be given some voice however.  Until their results get registered they may simply remain as shadow reports that aren't given much credence.

Keep it light gentlemen......

Willy

[Valtod]

The Paranoid Optimist - Cognitive Biases

http://www.sscnet.ucla.edu/comm/haselton/webdocs/PSPR2006.pdf

Positive illusions.
Some of the best known cognitive biases concern beliefs about the self and the future. People have been shown to have unrealistically positive views of the self, unwarranted optimism about the future, and to believe that they control the flow of events to a greater extent than is logically warranted. These effects were grouped together by Taylor and Brown (1988) in their seminal review and dubbed "positive illusions." Since the time of the review, some debate has arisen about the pancultural status of the positive illusions. In particular, members of East Asian cultures, such as the Japanese and Chinese, have sometimes been found not to self-enhance, but rather to self-criticize (Heine, Lehman, Markus, & Kitayama, 1999; Kitayama, Markus, Matsumoto, & Norasakkunkit, 1997; Yik, Bond, & Paulhus, 1998).

Taylor and Brown (1988, p. 199) offered an explanation for the prevalence of the positive illusions that tacitly contains an error management argument. They argued that positive illusions motivate people to persevere toward goals that would be beneficial but which have an OBJECTIVELY LOW PROBABILITY OF SUCCESS.

For example, HIV-positive men who are developing symptoms of AIDS have beliefs about the controllability of the disease that are unrealistic but, nonetheless, serve to motivate them toward active health-promoting behaviors (Taylor et al., 1992). Nettle (2004) provided a more formal evolutionary model of the Taylor and Brown argument. EMT predicts that if the cost of trying and failing is low relative to the potential benefit of succeeding, then an illusional positive belief is not just better than an illusional negative one, but also better than an unbiased belief.

This is the smoke detector principle applied to a positive outcome. It is better to believe that you can get something desirable even if you cannot, as long as the cost of the false alarm is low relative to the opportunity cost of missing out on a fitness-enhancing opportunity. The EMT approach does indeed seem to account for the domains where the positive illusions occur.

People have unrealistically positive views of precisely those characteristics of themselves that are desirable or beneficial (Brown, 1986; Campbell, 1986), and when people judge third parties, and thus derive no potential benefit from enhancement, the positive bias disappears (Campbell, 1986). People are unrealistically optimistic about the probability that fitness-enhancing outcomes such as finding an ideal partner and gaining professional status will happen to them (Weinstein, 1980).

People also tend to be UNREALISTICALLY OPTIMISTIC ABOUT HEALTH PROBLEMS — that is, to underestimate their likelihood (Weinstein, 1982). Our interpretation of this phenomenon is that people are unrealistically optimistic about the effectiveness of their own efforts to avoid health problems (Taylor, Helgeson, Reed, & Skokan, 1991; Taylor et al., 1992). This makes sense from the EMT perspective, as trying to avoid health difficulties that are inevitable is a lower cost error than failing to avoid those that are avoidable.

The two different smoke detector biases predicted by EMT — excessive sensitivity to potential harms coming from outside and excessive optimism about benefits that can be obtained by the self—predict that reasoning in domains controlled by the self may display different biases to reasoning in domains beyond the self’s control. This is the essence of the paranoid optimism phenomenon, predicting PARANOIA ABOUT THE ENVIRONMENT but OPTIMISM ABOUT THE SELF. There are phenomena in the literature that suggest such double standards.

For example, a meta-analysis of over 70 life-satisfaction studies from nine countries shows that people tend to believe that their own life is getting better, although also believing that life in general in the country where they live is getting worse (Hagerty, 2003). Similarly, people feel they are less likely than average to be involved in an automobile accident when they are the driver, but not when they are the passenger (McKenna 1993). Such discrepancies are an area where EMT makes interesting predictions for further research. (For a related argument in the domain of warfare, see Johnson, 2004.)

[Valtod]

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.

[Valtod]

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

[beamishboy]

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!

[mremeet]

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...)

[Valtod]

"...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.

[mremeet]

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!!

[beamishboy]

"All Nature is but Art unknown to thee:
All chance direction,which thou canst not see:
All dischord,harmony not understood:
All partial evil,universal good:
And spite of Pride,in erring Reason's spite,
One truth is clear,Whatever is,is right."  Alexander Pope

[jmjm530]

Mre: Alright already, lets put a fork in it!! IT'S DUN!!
---------------
Who was the first that said, "it ain't done until I said it's done"...anyway...

We seem to agree on the word "Whiners". Actually, the word amuses me now, but while on treatment (that riba does make things worse) it bothered me alot, and I assume also bothers others a lot, for all the adjectives you used and more. I used the word here in a satirical sense, but unfortunately, some here still use it in that same mean spirited way, and ironically, some of them are treating. All I can say to them is that until you walk in the shoes I walked in during treatment, then shut the f*ck up. Nuff said on that.

Where was I...well, let me skip to the end since this is getting old and I got a good movie on freeze frame. No, I didn't jump to the net when I found out I had Hep C, cause it was 1969 and not net. It was called chronic persistent hepatitis then and without the net, you really just talked to your doctors about it. I was lucky that I had the very best then although it turned out they didn't know all that much back then. But when I did find out I had Hep C, around when it was discovered, I did check out the net for a few weeks and found very little worthwhile at that point. I still relied on my doctors who told me that treatments were "barbaric", failed most of the time, and to wait. That was probably in the monotherapy days.

Like I said, the next time I popped back into the net was when I started treating. On day one, I didn't know a PCR from a PCP. By day seven I had scoured the net and medical libraries and read all of Lindahl's work.  On day 8 I changed doctors and asked for high dose riba and double-dosing. Yes, I ended up in the ER at week 2, but it wasn't for lack of trying. I tend to procrastinate, but once I get going I get going. I should also note that at the time I was incorrectly told I was between stage 3 and stage 4. Now I'm DUN.

-- Jim

[jmjm530]

Valtod: 1. Incompetent individuals tend to overestimate their own level of skill.
--------------------------------------
I've been to the very best doctors and to some very so-so doctors. What I've found (dermatologists excluded) is that the very top dogs are the ones that admit they don't know a lot of the answers. They are also the ones that invite patient input, listen to the patient, and actually let the patient make treatment choices. The so-so ones tend to be autocratic and it's either 'my way or the highway'. Dermatologists tend to fall into the latter camp, even the very good ones.

-- Jim

[katerika]

Wow, that was too much trading for one sitting. A lot of info.
It all boils down to read, be informed, go with your gut. Treatment is a personal decision.
I made a stupid, uninformed choice 37 years and after having quite a wonderful life and looking forward to more I was hit with this dx in 2002. Stage2 grade 3. I was told SVR was a 30% chance and since I had the disease for 30 years + it seemed like a good idea to watch how it progressed. Well March 07 Biopsy said stage 3 grade 3/4, I decided to treat. I am at week 20 and still not UND. I am hopeful, though some day's I feel " I am in deep doodoo!  Tx. hasn't been easy, and "if " I am finally UND, I plan to push for the 70+ weeks. If I am not, I will enjoy being off tx.for awhile and regroup. Life sometimes throws us a curve ball. I am addicted to my own personal hope, to be without it  would be very depressing!
Teri

[jmjm530]

The 72 week protocol is for people who are detectible at week 12 but non detectible by week 24.

If you're detectible at week 24, you almost have no chance of SVR, so doctors in the know will tell you to stop treatment.

That doesn't mean you won't get SVR -- just that you won't get to it with 72 weeks of your current treatment regimen.

I'll keep my fingers crossed that your're UND by week 24, but if not, please see another doctor (def a hepatologist) before continuing any further.

All the best,

-- Jim

[mremeet]

Look into Alinia, it's a drug already on the market that's used for parasites (of all things). Prelim results show it is a powerful HCV antiviral (for geno 4 for now, but should work for other genotypes too), with very minimal side effects. Too early to say if it's really all that, but if I were in your shoes right now I'd be looking into harrassing my doctor into prescribing it to you (like yesterday)...especially if you plan on going 72 weeks. It may turn out to be a salvation that's already sitting on the pharmacist's shelf. Good luck!

[jmjm530]

Don't want to talk for anyone else, but I'm assuming "Mre" means try Alinia if your UND by week 24. I  don't know if that will benefit you but I see no harm. But whatever he means, I would not extend beyond week 24 if still detectible at week 24 with or without Alinia.

Alinia may have some future promise but as far as I know there currently is no SVR data on the drug and certainly not in situations like yours.



-- Jim

[katerika]

Thanks I am on the upped dose of Interferon 150, and as I said I have a few more weeks till next blood work I am real antsy, trying to keep hopful for week 24 and UND. I am also pushing for the meds for Insulin resistance.  I figure if I can't beat the Hep right now I will focus on the fatty liver. Plus whine.whine whine.... I stumbled a few weeks ago and am scheduled for an MRI, Torn miniscus?  2 weeks ago abcessed tooth, my face blew up so bad the ER did a CAT scan. There is more, It's alway's something!
I really value your input.
Teri

[mremeet]

No, I didn't mean try Alinia only if you're UND by week 24. If I was in week 20 and still not UND, and was strongly considering going 72 weeks, even if I didn't achieve UND status...then damned right I'd look into alinia, and I'd look into taking it right away. Especially if I were teetering on the cusp of cirrhosis, and possibly largely squandering 72 weeks of hell with virtually no hope of scoring an SVR. I'd try my very best to get the skinny on Alinia, and as long as things looked at least reasonably promising (with no other information), I'd take it and take it with gusto (under my doctor's close supervision, of course). Sometimes in life you have to act and act boldly with very limited information. Obviously it's Teri's call, but depending on how she personally sees things, this just might be one of those situations.

[jmjm530]

Mre: If I was in week 20 and still not UND, and was strongly considering going 72 weeks, even if I didn't achieve UND status...
----------------------------------------------------
Can't disagree there. But I'm not sure that Katerika is considering treatment beyond week 24 if still detectible.

But if you're saying -- and I'm not 100% sure you are -- that if Katerika is still detectible at week 24, then she should add Alinia to the current mix and then extend treatment to 72 weeks, then we disagree on this on.

-- Jim

[jmjm530]

Let me re-prhase that because it's getting confusing.

I just don't think it makes sense for Katerika to extend to 72 weeks (with or without Alinia) if detectible at week 24.

However, if she does make the decision to extend, then adding Alinia is reasonable. Hopefully, she will get in contact with a good cutting-edge hepatologist beforehand, who will help with the decision.

-- Jim

[mremeet]

jimquote: "I just don't think it makes sense for Katerika to extend to 72 weeks (with or without Alinia) if detectible at week 24."

Well, even if she were detectable at 24 weeks, the possibility of trying Alinia is still a viable and good option in my opinion. Considering she seems to be moving towards cirrhosis rapidly (according to her biopsy results), time is of the essence. And assuming she already has a very low VL at this point (which I assume she does), if Alinia is truly a potent HCV antiviral (again which prelim results suggest it is), then she'll know if it's likely to work within 4 weeks after taking it. If I were in her shoes and were still detectable (either at week 20 OR 24), I'd look into Alinia. If it looked pretty good (based on the the earliest reports), I'd try it and be tested with a 2 IU/ml PCR at week 1, 2, 3 and 4 (starting from week 20 or 24 etc) after starting Alinia (while continuing on IFN and riba). If all of sudden the virus went UND, especially at week 1 or 2, I'd take that as a real good sign and keeeeeeep going. Keep going and keep getting those PCR's along the way (to ensure an UND status is maintained). Going out to 72 weeks from there would tack on a full 48 weeks more of UNDetectability, which should forbode a likely SVR. If I didn't achieve an UND status within 4-8 weeks after starting Alinia, then I'd consider quitting altogether. That is, unless I opted to provide my liver with therapeutic maintenance dosing for a while longer (not a bad option while I thought about how to get into a protease inhibitor trial etc later).

Anyway, that's my $0.02. I think Alinia is worth a good solid college try under these circumstances, be it week 20 or 24, even if not UND by week 24.

[Valtod]

From my personal experience on this forum: when I feel the worst, I don't have the energy or even the interest to follow what's going on here. And in the periods when my SX subdued during Tx, or when I felt cautiously optimistic that my health would get better, I was more motivated to participate. In fact, if I trace back my own postings in the last 2 years, I'll be able to mark the weeks when the SX were more tolerable.

I also notice similar patterns in the level of forum activity of other members, whose Tx stories I was following. People tend to be more active when they feel better, or optimistic about their course of action. On the other hand, they tend to withdraw when major health or existential crisis strikes them.

For example, NYGirl who used to be the ultimate optimist and driving force for a long time on this forum, now after personal tragedy and other personal seatbacks (see her “whining” party) is less frequent and enthusiastic participant.

PonyShelly, battling severe post-Tx SX, now only makes rare forum appearances, which is quite understandable (I think).

SFBayGirl (she and I started Tx at the same time) was very active and optimistic during her Tx until a major health crisis put her in hospital. Then she was MIA from the forum for more than 6 months, which is quite understandable (I think).

Other people, when hit with really bad news or intolerable SX and symptoms, succumb to depression or start looking for solutions elsewhere and simply disappear.

Also, there’s a category of people with very serious post-Tx problems, who come and post in the forum several times, then evaporate because the forum cannot provide useful advice or help that they need so desperately. There seems to be an inverse correlation between the severity of one’s health problems and the utility of the forum.

So, if we look at the distribution bell curve of forum participants, it seems the majority in the center are cautious optimists with relatively mild problems. The pronounced optimists and SVRers with minimal or no health problems form the right tail, while relapsers, people with very serious pre-, during and post-Tx SX and depressed pessimists form the left tail.

The selective forces (HCV - very serious disease, SOC Tx - difficult, long, not very effective and with bad SX, continuing post-Tx), forming the forum population, would be expected to draw a much thicker left tail.

Now we can see how the population is constantly shedding from both tails. Knowing the described dynamics, it seems plausible that more participants will drop out from the thicker and longer left tail, then from the thinner and shorter right tail. Observed for several years, this system would lose more pessimists with severe health problems, hence leaving them underrepresented in the total population, ever registered in the system for the given period of time.

Similar consideration could be generalized for other online HCV communities and distribution of opinion spectrum.

[jmjm530]

I've tried to make the same point several times but never so eloquent. The other point is that self justification and rationalization seem to be part of human nature. In terms of treatment, that means that means that some may minimize the negatives and maximize the positives, at least on a subconscious level.

All said, until actual studies are done regarding post treatment side effects, we will never know if post treatment (and treatment) problems are over-represented or under-represented here or in surveys like the one posted.  Same with pre-treatment extra-hepatatic symptons as well. On the flip side, we'll never have a lack of opinions, or threads like this. And I think that's OK. Even good. Cause we're not going to get this discourse in our doctor's office.

All the best,

-- Jim

[Valtod]

Mre, I find it bizarre that, after the initial exchange and my attempt to shift the discourse to more general and hopefully common ground, you still insist on sharing your “honest” opinion (about which I obviously don’t give a sh*t) how “temporarily insane” I am, or even worse - “very irrational person”.

You blame me 3 times for my “multi-post extravaganza of ad homs”, while your own endless ramblings are nothing more than a lame exercise of ad hominem circumstantial.

You also insist that I’ve “tried to kludge together some kind of mish-mashed scientific theory” and I’m “way off base with this hackneyed positive outcome thing of yours”, so I better “give it up”.

Hello! In which century are you living? This is not my “fanciful theory” but well established, DEMONSTRATED SYSTEMATIC positive outcome bias (in the cluster of positive illusions), which is mentioned in most of the books dealing with cognitive biases in the last 20 years (and probably thousands of research papers).

I gave some quotes and sources, which can give a start to anyone interested in the subject.

However, where are your sources and data for falsifying this “fanciful theory” of mine? How come in your confused “multi-post extravaganza”, you never bother to provide a pointer to anything reliable outside of your own skull? Please do that! Or follow your own advice to “give it up”.

And by the way, about “my fanciful theory regarding how and why human beings ALWAYS favor a positive outcome”, where exactly did I say “always”?

And how about this “brilliant” 3rd-grade level ad hoc explanation of how the things “really” work in the real “circle of life”:
-----------
If human beings were predisposed to this favoring a positive outcome when sizing up challenging and potentially life threatening scenarios, I don’t think that would bode too well for one’s natural selectability. “Look Zog, that lion is so cute and cuddly! I’m sure he won’t mind if we borrow a leg off his zebra!” or “Wow jim-bob, I’m realll hungry, those mushrooms there look delicious. I’m sure they’re ok to eat, lets have some!” There’s a strong argument to be made that human beings, like most animals, have an innate wariness and suspicious nature when it comes to sizing up something that may not be perfectly understood (when in a natural setting).
------------

Seriously?! You just came up with this and decided to share it with the world?

My only option is to take it as a joke. Otherwise, I’ll have to suspect delusional insanity (at least temporal :-)

And now this “serious” argument:
--------------
My post tx experience is what it is, and I’m telling you what it is. I’m not forecasting what it will be with starry eyed optimism because I just want to believe everything will work out. I’m telling you real-time what it is.
--------------

Is that really what you’ve concluded about the Positive outcome bias? That my issue is that you’re FORECASTING your own positive future experience? Since I can’t believe such a naive reading, I’ll assume it’s just another cheap rhetoric trick.

But let me try it one more time:
The issue is NOT that you’re forecasting or lying about your positive outcome. The issue is that you claim that your (real) report is underrepresented, implying that there are many more like you. Hence, the probability for positive outcome for those who are about to make a very difficult and important decision in their lives - to Tx or not, exactly how and for how long - may be (much) higher than previously thought. And this is a very irresponsible suggestion, I happen to think! Because pushed by their OWN positive outcome bias and encouraged by YOUR mythology of the “underrepresented” lottery winners, some of them may make ill-advised decisions with disastrous results.

Since you’re already on the other bank of the river in a cozy cocoon of post-purchase rationalizations, it’s easy for you to influence those, who haven’t wet their feet yet, how much greener is the pasture on the other side.

[sfbaygirl]

Glad this topic is still in play.  I haven't been around for a couple of weeks, due to post-tx sides and trying to fix up my rental unit I have rented. Great to hear from you all btw.  Today I was supposed to go and wash some walls in my rental house....couldn't do it. A flare up of the Chronic fatigue or Fibromyalgia created too much pain for me to do so.  Some days are good and I have energy and no pain. I am post tx 8 months now, but have relapsed.  I worry about going back to my 70k job, as I can't seem to keep myself healthy for any sustained period. Obviously, the tx I had for a year caused many more problems for me, than if I had never treated. I would love to tx again, but won't until there is reseach to suggest it is advisable for me.  I haven't read many of this post.  Just wanted to put my 2 cents in and  say I am glad that this topic is still here.  Hi and love to you all!!

Linda

[katerika]

poop! I can't say what a bummer it is to hear about your relapse. What genotype are you and how long did you treat?
Keep the faith! Keep us posted.
Teri

[Valtod]

Jim, there are 2 issues conflated here:
1. What are the ACTUAL rates of long term post-Tx complications and their severity?
2. What the people (in forums like this), considering Tx, ASSUME they are in their decision making process?

In order to answer these questions, it's not necessary to set up and conduct new research - retrospective analysis of already existing data would be sufficient.

Many Tx trials from the last 7 years had collected follow-up information about their subjects - not only PCR and histological data, but also lab test results, QOL and health issues questionnaires. Also, having access to the (anonymous) records of just several large practices treating HCV, would be a good enough statistical sample for retrospective analysis. If I had such a slice of 300-400 records of raw data, it would take me just 1 day to extract and report on the rates of post-Tx complications.

The second question can be also answered by analyzing the database of medhelp.org Hep forum postings from the last year. This would require more work because the data is not structured and all the postings have to be flagged based on some reasonable criteria. For example, each posting would have 1 of 5 possible flags: strongly optimistic, somewhat optimistic, neutral, somewhat pessimistic, strongly pessimistic. In order to automate to some degree the process, a keyword search algorithm can be created.

Assuming we have the quantified answers to our 2 questions, we can approach the most important issue: How the REAL outcomes correlate with the patients' PERCEPTIONS in their decision making process.

[meki]

PEACE - LOVE - GREAT SEX...

Anyhow --- Check it folks... Youse guys are having too much fun pounding on the keyboard.

Hugs to you all.

Meki

[kritikal]

I am currently on month 2 of treatment, but I found out I had it right away, so I am not being treated for extra symptoms, just getting rid of the virus. I would imagine if you were sick from liver damage, and you killed the virus off, that you would still suffer with your current organ damage, it just wouldn't get worse. I think the premise of the survey is flawed.

[leoell]

I have just completed my third attempt and I am personally resolving to forego any new trewatment. I have experiencxed discomfort during each ntreatment and I am noticing post treatment issues and I still have hep-c. The medical profession, the poharmacuetical companies, and the FDA can find others who are willing to be expereimental subjects. I was trying to be altruistic hoping to get cured and to provide hope for others but I am no longer willing to try. Three times ios enough to accept that my hep-c is incurable. I will explore natural and herbal remedies but I will be extremely cautious about what I do wi9th this disease for the duration of my days on the planet.

[shawn411]

I agree, anything I see on these forums scares me to death. Everyone is miserable. I am 2 months into treatment, yes it ***** but I went into treatment with such expectations. I went into treatment knowing that eventually hep c would kill me and am not comfortable going through life knowing my blood is contagious. I hope to have a successful treatment and should realy stay away from such forums.

[working dog]

i feel so much better post tx then i did before i treated and i had awful symptoms on tx....it took a year post tx to get over....i think a lot of folks get too anxious post tx and start taking more drugs making things worse...i would think stay off meds for a year post tx if you can to let your body recover and rebuild...

[diana11512]

Right on! I'm currently 6 weeks post triple therapy treatment and experiencing aches in my hands and wrists, sometimes terrible pain! However, I made the decision to have treatment knowing it would be grueling. I had to ask myself now, what was I thinking? My answer is, I still would do it. Idk, maybe I'll be lucky and this pain will subside eventually, but not if I stay focused on all the negativity I read on here. Mind-body connection. Can anyone please tell me something positive as a result of their decision to treat? Some of us need some hope and positivity.