Hepatitis Forums
Off Topic Forums => Off Topic Forum => Topic started by: Mr. Bob on June 26, 2015, 09:54:30 pm
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We'll get it out of ya one way or another even if we have to trick ya.....he he
I thought with all the Hep C medicine advertising on this site you may not want to say anything negative about treatment...... and appear to seem pretty neutral on most issues....hope I'm wrong
respectfully RJ
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Well, if people read more of your books and an awesome activist for us they'd already would have known you don't shy away from anything, and I would personally like to thank you for all your books and all of your personal issues that you ,yourself have endured, sincerely and Thanks for all you have done.
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The reason I am associated with HepMag.com is because I trust them. I am 100% sure they put patients first. They protect patient information, which isn't true for many other sites. They don't censor blogs and they are constantly scanning the forum for pharma presence. Yes, they accept advertising, otherwise there is no money to do business.
I assume you haven't read my blogs or you would have seen that I have called pharma to task. On the other hand, I am cured because of pharmaceuticals. I am grateful for the drugs they provided, but sure wish they cost a LOT less. Pharma's advertising has never influenced me, and I do go the extra step by avoiding pharma stock in my moderate retirement investments. I speak strictly for myself.
You didn't ask me directly, but I hope this settles your concerns.
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Bob,
I would read Debbi's comments, as she nailed it! Lucinda is a warrior for Hep C patients and I can guarantee you no one could possibly get her to say something she did not firmly believe in. And, that is true for all the moderators on this board. Our purpose is to provide a safe, honest place to discuss treatment and feel support and camaraderie, and most of our effort is trying to keep people with some sort of agenda away from our members in order to make sure this is a safe, non-exploitative forum. I will seldom respond to threads now, as the natural interaction of the membership is so complete & helpful, there is nothing I could possibly add. That is awesome in my eyes! But, if you read through Lucinda's or any of our posts, I hope you see the empathy, concern and care we strive to convey. We volunteer our time here because we know it helps many people! -jack
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Thanks Jack yes I did read Debbies comments.... and I like it
Since you kinda brought it up..... it would be nice to know full disclosure , just as when Doctors speak they often have to mention the Pharmaceutical companies that are paying them.......... if that is not any concern here all is well....... can't help being cautious with all the things happening out here in the fast past money driven world... just looking for the truth like most of us.....
RJ
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Bob,
Or perhaps you are pushing too far for some other reason? Has anyone here advised you to buy something? We never, ever advise people on what treatment anyone should try, or steer anyone from or to a treatment. We say repeatedly that is for you and a medical professional to decide. What on earth is your specific concern about possible bias on this board, especially by Lucinda, or any moderator?
Happy to disclose my full compensation for my association with this forum - $0.00 - as I said, I am a volunteer. And actually, Lucinda's, Mike's & Lynn's friendship has been a huge benefit to me.
If you are under treatment I hope it works 100%, if considering treatment I hope you find a medical professional that can truly advise. Best wishes, jack
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About the ads on this site and these forums… I have been wondering for a while now whether the ads are targeted to individual users based on how the forum software profiles each of us. The way Facebook does. In other words, do each of us see different ads here? I have more than once heard people mention all these pharmaceutical companies advertising their Hep C drugs. I have never seen such an ad. In the last 5 minutes here, I have seen ads for amazon.com, the FDA (advice to check the Drug Fact Label) and African American Hep C Awareness Day. Also various ads for Hep Mag itself (read a story, share a story). I do not think I have ever seen an ad for a Hep C drug. I have never seen the name "Gilead" or "AbbVie" in an ad. Just wondering how this ad thing works.
kim
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Bob,
I would read Debbi's comments, as she nailed it! Lucinda is a warrior for Hep C patients and I can guarantee you no one could possibly get her to say something she did not firmly believe in. And, that is true for all the moderators on this board. Our purpose is to provide a safe, honest place to discuss treatment and feel support and camaraderie, and most of our effort is trying to keep people with some sort of agenda away from our members in order to make sure this is a safe, non-exploitative forum. I will seldom respond to threads now, as the natural interaction of the membership is so complete & helpful, there is nothing I could possibly add. That is awesome in my eyes! But, if you read through Lucinda's or any of our posts, I hope you see the empathy, concern and care we strive to convey. We volunteer our time here because we know it helps many people! -jack
Bob ,im new here as of today but have been lurking for a couple month's now since i started treatment , ive also lurked other sites but found this one my favorite so i decided to join here...., as jberlin has pointed out , well managed/moderated , great articles from Lucinda and many great ideas and information from all who participate. .......iv'e been google crazy last couple month's tryin to figure out my issues and everything iv'e found here to be spot on in comparison ,,,,,with an added bonus of inspiration from real time experience from those who share their story.
K
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Ad's? What Ad's?
I use a blocker on my browser cuz I don't need no stinkin Ad's.
As far as folks being concerned there might be some hidden agenda... *shrug*
I haven't seen one. I finished my 12 weeks in mid May and I was glad to have this site; it helped me maintain my sanity. There are of course many other places one can go for information. It's a free world out there. My best too all... wherever they are on the path.
Oh.. I FWIW, I dunno if I'm cleared or not. I talked about this with my care provider in my 1st post Tx appt. They are considering not doing the 4 week VL's as they are seeing a lot of unneeded angst caused by them. I tend to agree. I can't count how many times I read one poster cheering they were UD and someone else diving off in despair cuz they weren't. A lot of apples have been compared to bananas.. but I digress. I'm either cured or I'll cure with some future Tx. In any event, the people who volunteer to maintain this site (which is a lot of free person hours) deserve a big round of kudo's.
Thanks to all the Mods.
Peace
-d
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Thanks Ledoc01,
I never really notice the ads either, but you reminded me I do/did/maybe get a benefit because the forum owners worked one of my company's ads in the mix, and it did, and may still, run. (totally not related, we are a software company, but full disclosure). I hadn't thought about that in months, and think it was a filler ad as the way it works is companies pay for x number of impressions (clicks) and randomizer code rotates the ads on our site. Everyone sees the same ads randomly, as our forum site is not nearly sophisticated enough to be doing any sort of profiling, and all of the data here is kept private.
So, you are getting a 12 week blood test? Please let us know when that comes in undetected & you are cured, as I am sending good vibes your way!
Appreciate the nice comments,
jack
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I just see an ad for Harvoni hope for hep c it says.
Just got my big raise for working here from $0.00 to $0.00 lol
I always feel the same before, during, and post treatment really boring.
The only side I maybe had was a couple of mild headaches. Was it from Harvoni or not who knows. I did have some anemia from the ribavirin but that quickly resolved. In just 10 days after discontinuing the riba my HGB was back in normal range and almost to pre treatment level.
Just a hep c patient like the rest here just read too much and post too much and wishing all the best!
Lynn
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I've been a moderator on this board for over a year. I have spent many hours trying to provide solid information to people who are dealing with HCV and/or HCV treatment.
I do this for free and have not been paid one cent for the time and energy I have spent on this forum. I haven't been compensated for the many prayers I've sent for people struggling through treatment and the tears I've shed.
I do this because I want to give back to the community that which I have taken: The knowledge, encouragement and support that helped me get through this nightmare called Hep-C.
It's really that simple.
Best wishes, Mike
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RJ - I just realized that last week I was in a similar position as you are in on this forum thread. I saw a Facebook ad for a company pushing a hep C-related product. Here is what I wrote in one of my blogs on Thursday, "
My story begins when an ad popped up on Facebook. The ad was for hepatitis C and it was from Pack Health. I was immediately suspicious. I thought, “This is probably some sort of pharmaceutical company spying on my Facebook account.” I became surly and defensive. I was going to get to the bottom of this. My biggest concern was that these ads were going to patients. I needed to find out if they should be warned.
http://www.lucindaporterrn.com/hepatitis-c-pack-help-is-here/ (http://www.lucindaporterrn.com/hepatitis-c-pack-help-is-here/)
In short, sometimes being an advocate means being curious, suspicious, skeptical, and so on. I am assuming you are being curious. Hope your questions are answered.
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The title of this topic is misleading. I wish people would stay on topic. Barely any post treatment updates. Maybe some things better served on PM.
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Excellent point - thank you Lolacme - I am going to split this thread and move the unrelated posts to Off Topic.
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I have been a member of this forum since January 5th and I have to say, I have never felt like I was being solicited or influenced to purchase anything.
I have a great admiration and respect for the moderators on this site and am extremely grateful for the assistance and encouragement they offer. Keep up the good work and I wish you all health and happiness.
Thank you,
AL