I'm going to try to move this discussion out of respect for Shandi's "update on my drug search post".
The thought of people coming here to market or claim they have an illness in which they do not...makes me sad, angry and turns my stomach. I understand that none of us really knows who each other is or what problems they experience but I will continue to give people the courtesy and respect that I would like in return. Although we don't know each other personally we do know that each and every one of us here is a human being.
When I found this board I was newly diagnosed with RA. My world had just been turned upside down. I was angry, confused and ignorant to what this disease was or all the ways that it would affect my life and the lives of those around me. I'm not here to say that everyone is telling the 100% truth or that nothing is exaggerated. What I am saying is this...This board and the people here have been a blessing in my life whether I know them or not. I left AI for awhile and I really don't know why. The people on this board have educated me, supported me and helped me in more ways than I can count. I find peace here, the freedom to really talk about what I'm feeling and what is happening to my body. It's so nice to have a place I can go where people truly understand and can relate to you, your illness and the way it affects your life.
I know what my illness is, I know how it affects my life and I know whatever posts I make...are with 100% honesty. I will never feel that I have to validate my posts, who I am or my disease. If I am able to bring comfort to another person here or help them in some way...that is what I am here for and I am happy to do it. I have not earned my place on this board if I am not able to help others the same way in which they have helped me over the years. We have all different types of people here with all kinds of personalities and opinions...those three things are valuable assets not liabilities.
I personally hold no ill feelings toward anyone on these boards and do believe that every one of us has something to offer that will help someone else. I may not always like what someone has to say but they're not always going to like what I say either....that's okay. It's called life. With all that being said...and I know it's a lot
Karin1013...I agree with you that it is important that everyone is honest. Being honest is what helps others.
Peace & Love....Cuz I really do think you are ALL great.....Neasy
Neasy,
Thanks for moving this - what a kind and wonderful idea.
The thought of people coming here to market or claim they have an illness in which they do not...makes me sad, angry and turns my stomach.
I'm sorry - but I'm still stuck on this idea. Is this possible? Would Big Pharma stoop so low? I've been accused of being cynical on this board before - but - I never even thought this would be a possibility until yesterday.
How could people like this look themselves in a mirror.
Pip
NeasyNeasy,I don't understand why anyone has to attack anyone or make accusations or anything like that.
I agree with Neasy that it is an asset to have different types of people with different personalities and opinions on the board. Many times I have thought and thought about something, posted it, and got responses that I had never thought of that helped resolve an issue. I guess I wouldn't gain that knowledge unless we were all different and thought differently.
You lose so much respeect and dignity when you attack someone is it really worth it?
I will say that before I took a break from AI. There were some people coming here to market different things for RA. They were very open about what they were doing and why they were here and I think we did a pretty good job of letting them know they were not welcome here with their "miracle cures". We (including me) got down right nasty with those post as these people were targeting our illnesses just to fatten their own pocket. We get enough of that crap in our lives without them bringing it here. Fortunately, I haven't seen any of it since I've returned and am keeping my fingers crossed I don't. Of course that being said...there's always going to be a village that's lost their idiot.
Peace & Love...Neasy
Pip - I do a small amount of day stock trading. The companies have on staff paid personnel who go onto stock message boards and post false information to manipulate the stock to benefit the share price, up or down, depending on where the company wants to go based on when options expire for the CEO and Board members, etc. Totally illegal, but the SEC is one more toothless American watchdog agency that should be shut down IMHO.
I have to say from day one when I signed up in here I knew I was going to be posting on a public forum that Big Pharma has paid personnel following our posts. You bet there are some ringers in here trying to convince us to use their drugs. And the insurance companies have personnel monitoring us, trying to trip someone up to deny them coverage. It's enough to make a sick person sick. Neasy, you are the greatest! Cathy
GoGo - I never said you had personal knowledge and Gramma - I never meant to attack or accuse anyone. I'm just stunned. I know maybe I should grow up - but the idea that this would even be a possibility just floors me.
Cathy - ...wow! This just blows my mind.
OK, let me ask this question in a different way. You have been on this board for a couple of months. You ask for opinions on what to do about your pain etc. Somebody that is paid by a pharmaceutical company suggests you try 'X' and even goes so far as to talk you out of trying a different med or a different protocol. How do you feel emotionally when you figure out their supposedly friendly advice is based on the fact they got paid? How does that effect your "friendship?'. What if years later it's found that the drug has some serious side-effects not listed now? (as an absurd possibilty let's say your skin turns purple with big white dots). What if the pharmaceutacal company is later sued in a class action lawsuit for knowing about this info and hiding it. How do you feel now?
I am serious - the thought that there would be ringers never crossed my mind.
How do you feel about this?
How do they justify doing something like this?
Pip
You know - we American's are so hardened my media etc. we never make moral judgement calls anymore. I am. This is wrong. It's misleading. It's immoral. And the ringers that do something like this...well, I'm truly sorry if this makes me a bad person..but I sincerely wish for some sort of proof that Karma exists and these A****les get hit with one of these diseases. Then they get to use those drugs for real.
Pip the p***ed
I also wish for the whole "what goes around, comes around" philosophy. Especially for those people who use innuendo to try and smear other posters. Sometimes, I find on these boards that some people just can't be happy when someone else is doing well. They then sink to the lowest level possible and start questioning if you are ill or not. I will have had RA for 12 years in August. The first three and a half years were hell on earth for me. I was lucky enough to start taking Enbrel shortly after it came out and it literally gave me my life back. I don't understand why that is so hard for some posters to accept. It seems sometimes there is a Lord of the Flies mentality that permeates people's thinking abilities. I feel good. I'm not in remission, but as long as the Enbrel continues to work and I can function normally, it's okay with me. When people ask about my experience or if anyone is on Enbrel, I reply.I find it hard to believe that all this intrigue is taking place. I really believe that the big drug companies have a larger agenda than monitoring an RA site and trying to manipulate it. It's much easier to manipulate the doctors to prescribe their products.
After what has been said, and the accusations that have been made, I'm afraid to share my good news that Remicade and MXT has started to work. I'm pain and inflammation free. It's a shame that I feel that I'll be attacked as one of those, if I promote how good I'm feeling. This is a great disservice to the individuals who use this forum.
It's one thing to point out that this could possibly be happending but now the fingers are pointing and accusations are being made towards individuals. This isn't appropriate.
Everyone on this forum has an agenda and it's to go into remission and feel better. There are a few who have wedsites, who post them and have a different agenda than ours. Most people are here for support, advice, and information and not to promote their personal agendas.
I don't buy into this cloak and dagger mentality. Please don't PM me regarding this. This is also the only comment I'll make regarding this subject. I only wrote this so that other forum members might step back and think for themselves and not start pointing a finger at their forum friends.
WELL SAID LYNN!!! THANKS!!
Oh and I would like to talk to you about Remicade and MTX. I don't have time now, have to run....My sister with RA is on the Remicade and thinks it may be helping a little and the Dr. wants to try a small dosage of MTX to give it a little extra push, but at the beginning of her Dx they used high doses and she bacame very ill and has some permanent damage to lungs, liver and esophagus. My question is do you all that are on this think a low dose would help and not do more damage? Thanks for any help with this...
LinB, yay!!! I am so glad you are feeling better, please do not be afraid to share your good fortune. It helps us who are still in pain believe their may be hope, a hope I and I am sure, many others, desperately need.I love reading about success stories and how different treatments have helped people get their life back. Those posts give me and others hope that we may actually have a better future with this disease. I like different opinions and looking at every possible angle. I guess that's just the type of person I am. How can I truly make the best choices if I am lacking knowledge?
Try to remember that every single post regarding medications, excercise, diet, alternative treatments and so on only give us options and that the choices are ultimately our own. These boards have limitless amounts of information at our disposal. Certainly more information than I've found anywhere else. I am very pro-AI and proud to be a member of a board that helps so many.
Peace & Love...Neasy
Then maybe I AM naive. It just seems sooooo dirty.
Nobody has accused anybody - and nobody wants to accuse anybody. IF a person is doing this - they have already justified their position in their own hearts and minds.
Lin - I am exceedlingly happy you're choice worked. Nobody should ever feel the pain and agony we face each day. And, as most people post about their lives and hopes and dreams you feel you are getting to know them. That they are a real person facing what we all face every day.
That is what I was hoping this thread would cover. Not mindless recriminations - which GoGo has pointed out - nobody has actually accused anybody and only one person is protesting - way to much. Since I have never noticed that pattern with that person - I now am wondering why she is proesting so much.
If there really is a plant on these board - which we will never be able to prove one way of the other - that is the reason I asked my question. HOW WOULD YOU FEEL?
Let me answer that - I would feel used and betrayed. Stupid? Yeah, that too. To think somebody would feel so little for what we go thru to pretend to offer support and friendship under the guise of a job. To point people in the direction of a medicine under the guise that it works for you? We've all seen the posts "help, I'm new and I'm scared" - so somebody takes the fear away and it was all a lie?
I guess it makes sense - we just can't really trust people we meet on line.
And that too is so sad.
Pip
Neasy -
You seem to have a good heart.
Why do I feel so betrayed by just the idea of this?
Pip
This is just too weird. Sounds like conspiracy theorists have come home to roost here.
I for one don't see where someone has been pushing one particular type of therapy.
I have been lurking here for years and only posting for the last 6 months or so, but this seems way over the top to me.
Don't mean to be insulting, but man, get a grip already.
Yeesh, talk about a tempest in a teapot!In my previous life I studied advertising - and none of this was possible. OK, so I'm showing my age. :-)
But recent advertising, IMO, goes way to far. Like astro-turfing. And how long it takes people to realize it's fake.
Pip
P.S. Notice nobody answers the question.
Astroturf? What question? I don't have cable...is it on TV?[QUOTE=Gimpy-a-gogo]
It might not be happening on medical boards, but even if it was, I think most people research their treatment choices more thouroughly and don't just go on some strangers say on an internet forum. Pip!, I know you're a person that really researches your choices.
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No we don't do what strangers say on the internet, we go to the Dr office and do what that strange guy says to do.
You can make yourself nuts with this stuff.
Neasy: Thanks so much for starting this! Sorry I just noticed it. You are too sweet!
I think what Cathy said about stock message boards is very interesting. I guess if they can do it there, they can do it anywhere!
I hate to think that a newly diagnosed, suffering, sick, aching, desperate person might come to a board like this and get false information from a marketer. But I guess there are bad people everywhere.
We just have to protect ourselves by reading labels, studies, scientific articles, etc., in order to make an informed choice.
Hugs, Karin
OMG Marian!
That is hysterically funny - and oh, so true.
Karin -
Yep, you're right, Study and learn.
All -
I think the whole idea of this just hit a nerve for me.
Pip
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No we don't do what strangers say on the internet, we go to the Dr office and do what that strange guy says to do.
You can make yourself nuts with this stuff.
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Hehe, Marian-- too funny
Because, it would be exactly that sweetie. I think we are all very sensitive when it comes to our illnesses. Just try to remember that this is only a discussion. I really do believe that those kind of people would post sporadically and move on.
Posted by Pip...I think the whole idea of this just hit a nerve for me.
Understandably so...try to all take it with a grain of salt and don't let it eat you up inside. We are real people here with very real illnesses trying to help each other. Nothing changes that.
Posted by karin1013...I think what Cathy said about stock message boards is very interesting. I guess if they can do it there, they can do it anywhere!
Absolutely, I agree, they could....they're relentless.
Posted by marian...No we don't do what strangers say on the internet, we go to the Dr office and do what that strange guy says to do. We know he has a profit motive but we 'trust' our doc anyway. You can make yourself nuts with this stuff.
I wanted to end the post with marian's post because not only is it funny as all get out...It's TRUE.
Peace & Love....Neasy
So I did a little google on the internet and it turns out that even if drug