I have said it before, and will say it again: I want to hear personal (the feared word in the Pychiatric world is "anecdotal")stories on meds and how they make someone feel, reactions, every possible thing the med did for them good, bad and ugly.
Personally, it is that sorting out of stories that helps the most. I have also written here how CABF did in fact censor and remove many of my posts in 2001-02 long before the FDA came out with warnings on antidepressant use and suicical ideation with kids under 18. I lived with my daughter on Zoloft and spoke candidly about her rages, and suicidal thinking as well as attempts (car jumping).I also told of how the withdrawal (another thing some docs either dont get or are in complete denial)period was the worst , it lasted 2 months. I coined the phrase "worse before better" on that one. I was deleted many times from those postings, even though I wrote 'personal story', 'I am not a doctor'. Now the site has links to the FDA advisory.
I will share my own story here with Prozac and Zyprexa. In short version, for the first time in my life, I had severe suicidal thinking, I was wreckless while I thought I was in control, I could not use a debit card. I had tremors so bad I couldnt walk or sit up, even speak. I was given the medications on top of trazedone and xanax by a regular doc, not even a psychiatrist. Why? I was moving houses, and felt anxious. Unbelievable, when the doc told me as I complained I also had not slept for 6 nights, that I sure must be bipolar. I titrated off of the medications. I also had asked him about Prozac with trepidation, due to my daughter's reactions with ALL antidepressants. He actually told me not to worry, that he would have known by now if I was bipolar. Then of course once I had all of the crap go down on the meds, wanted to diagnose me bipolar BASED on medication reactions behaviors.
It took 2 solid months of being in a drugged up coma to get to the point of realizing I needed to get off of that med cocktail, because I hated to admit also, it took me out, I crashed big time. I never again want to stand on the roof of my car in the rain at midnight screaming I want to kill myself.
Am I telling anyone to stop these meds if they are on them? no. Am I saying they are bad meds? No. I am telling my story about what happened to me on them.
We all must have each other's backs on this one. It does not mean people will base entire decision making on opinion. It gives thought. Either way you look at it, no one knows how a med will respond until they swallow the pill.
I am not going to say the words 'I suspect' here, I am going to say " I know" that their is censorship on sites, especially because pharma-companies money most likely is entangled up in the big web. These are dangerous drugs that can kill people. I think it's pretty smart of a consumer to want to hear as much as possible before they make their decision. Knowledge is power, and education key to success.With that in mind, success is still elusive, and it is because we are talking chronic illness here. Chronic is forever. Meds and treatments tend to burn out over time, yet the chronic illness lingers.
I am sure many people have taken information to psychiatrists from the internet and had experiences like I have where the doc ignores it with a wave of the hand. I have read outloud pages of the Bipolar Child book to my daughter's psychiatrist, back in the days I was convincing him she was having Zoloft induced rages(6 hours a day really isnt therapeutic is it?)
It is imperative to hear other people's experiences on these medications. When meds have blackbox warnings, I think it raises the bar to wanting to know everything possible.
In the end, we are in charge of what we take or do not take. I have heavily relied on pages on the internet for years, finding stories about how people felt on meds. It was actually how I found out Trazedone was the reason I was sweating so much, hell I thought it was hormones. Went off the Trazedone prescribed for sleep, and actually slept the best in years off of the medication.
Patients stories are honest accounts of what can happen while on a medication. Prescribing information by pharmas don't have that black box.

it seems clear that this is all about censorship - - how do we fight it? the pharmas have big money and power to control what we read. but how can we let this happen? this is extremely disconcerting and if i can't read articles like this one (the one on abilify), where will i get my REAL information?

This is how Charlie.
Speak up, every chance you can, and start at the top (Government)and work backwards, into community. Become vocal and do not take no for an answer from docs.(or anyone else) Find one that will have open minded and provocative conversations without feeling threatened. Just because someone has a medical degree should not limit conversations regarding medications, and what the med can,and does to your body and brain. In my ideal world, the doctor gets you in a classroom setting, and off of the couch, and teaches a chemistry lesson, how the med is made, and how it could react within the body. I am more impressed with (so far 1/8 or so)that was on call once and actually did use anecdotal stories to decide to use a med or not. That med happens to be Abilify. He listened to his patients and passed their experience onto others. My daughter was not given Abilify by this doc who feared she would become manic on it, based on what happened with other patients and her own reactions from the past. A different doc eventually trialed Abilify at large doses on her, and the result was horrific for her.~~
"Never doubt a small group of thoughtful, committed citizens can change the world: indeed, it's the only thing that ever has."~~Margaret Mead~
Yes, when it is time to rise to the occasion, we must rise up, go forward and not look back. Take some gut punches along the way and know one voice makes a difference. Sometimes this road is a one person path, but trust me, others are watching your feet move.
How to simply start? Write letters, talk about the outrage. Talk about what you want to be changed. Then tell everyone else, including pharmacists. (on that note, I find pharmacists to be very helpful and quite candid, regarding medication discussions)
Money will continue to rule, so will politics, its all in there together, but hey the squeaky wheel gets the grease.
Also, it is easy to start a website for anecdotal stories Charlie. So rise up, take the step.

Thanks, Stephany. I suppose we should all heed your advice and "take up the fight."

And I certainly agree that pharmacists - - who know as much about meds than doctors - - and also nurses - - should be contacted about side effects of drugs that Mr. Berman discussed in his article.

One website I have been reading for years is www.crazymeds.org
This site gives some pretty good humor mixed in with the medication information, as well as having a place to post to each other regarding meds, and personal stories.

why should we be the least bit surprised by this article being removed?

the pharmaceutical industry in this country is probably as big as the defense industry and oil industry.

these guys don't want their big money makers "knocked" by people who have plenty more experience than they do with medication and mental illness.

it's ashame that a seemingly honest article, intended to help other readers, was squelched.

i guess the big guy always wins in the end.

too bad.

Interesting article here:
Bitter Pills
What if Doctors Chose Global Treatment for AIDS over Pharmaceutical Companies' Freebies?
by Herbert Schreier

http://www.commondreams.org/views01/0302-05.htm

"The detailers cost them another $5 billion. If all the doctors in America said no to free meals, pens, clocks, calendars, stickums and the like; if they paid for their own educational events and meals and asked that this $1 billion be spent to address the AIDs pandemic, that amount could pay for fully a third of the needs of the afflicted.

And if we physicians agreed to get our information about drugs from any of a number of Internet sites (where drug companies could advertise their brand names), we could actually treat the world's AIDS patients and, with the money left over, wipe out tuberculosis and maybe even malaria.

Wouldn't that be worth a sail on Monterey Bay?

Herbert Schreier is chief of psychiatry at Children's Hospital in Oakland.

©2001 San Francisco Chronicle "

Paul, they only win if you let them. Rock their boat. No, it was not surprising to me at all. But if enough people start speaking up and loudly, we cant change it all, but we can be heard in an arena who needs it: it is the "you and the me"(to quote philip somewhere on this blog)Im not waving the white flag, Im raising mine up with one hand, and holding the reigns with the other, and riding in to the battle. We all have power and together all add to the fight. Don't drop the shield, just pick up anothr lance.

I say bravo to Andy Behrman (Electroboy) for being so brave to write about his experience with Abilify.

It's a sad sign that about.com, which is "set up" to help people with mental illness, would actuall censor him.

I hope he continues to write and spread the word.

Patients probably have more knowledge about their own mental health issues as do their doctors. So, why ban an article in which a patient is open and honest about his side effects from a drug? We all have side effects from our meds. It's clear to me why the article was removed and I'll write to the editors at about.com/bipolar and voice my concern about free speech!

Was Behrman's article censored? Well, it certainly appears that way! After all, he was writing about a medication on About.com/Bipolar, which is chock full of ads for the same medication, Abilify (manufactured by Bristol-Myers Squibb). How could this mega pharmaceutical company not have been furious about their new drug being criticized on the same page?

Luckily there are forums such as these, not controlled by big money corporations which allow people to express the truth - - which is exactly what patients (and doctors) need to be reading.

The issue really goes much further here, for those of us in the mental health field. As a psychotherapist, the pharmaceutical industry is without a doubt in control of the "mental health game," which includes the flow of research, information and education to consumers. Now certainly this massive industry is not going to allow for people like Mr. Behrman to take swipes like this at products that bring in billions (yes, billions!) of dollars. And if they can control publicity and media, you can bet that they have teams of people doing so. I'm curious if Mr. Behrman has been approached by any other media to talk about this incident or has spoken about his side effects with Abilify publically since this happened.

So many of my side effects from Abilify were similar to those reported by the author, whose book I read as per the suggestion of my pdoc. Interestingly, in Electroboy, I'd say that of all of the meds that he described, I experienced very similar side effects. So, is the veracity of his account being doubted? I was only able to tolerate Abilify for three months + -- but the agitation forced me to go off. And I, too, was scared to tell my family, my friends and even my pdoc. So, I understand where Behrman is coming from. It's just so sad that his ability to tell the TRUTH has been squelched by about.com/bipolar, which is owned by the New York times ("all the news that's fit to print"). When I was at Columbia Presbyterian hospital for my first hospitalization and given Zyprexa, my doctor told me when I complained of side effects, "we'll make those go away." But they never did.

It's sad that about.com, a forum owned and operated by "The New York Times," would even think of censoring anybody's opinions (or in this case, story of side effects on a drug).

Is there anyone to whom we can write to voice our dissatisfaction?

The New York Times Company
229 West 43rd Street
New York, NY 10036

Main number for general inquiries about the Company and The New York Times: (212) 556-1234
-----
About.com:
For questions on About.com, please call: (212) 204-4000-----Corporate Communications:

Catherine Mathis
Vice President
Corporate Communications
(212) 556-1981-----

Paula Schwartz
Assistant Director, Investor Relations and Online Communications
(212) 556-4317

They're trying to position Abilify as the new Prozac - -first a treatment for schizophrenia, then bipolar and soon depression.

But they do not want to talk about side effects and it's only fair game that patients be able to be honest about their experiences.

I've made my phone call to about.com. Told them I was boycotting the site until I could click on "Read More" when the Electroboy article discussed pops up. Right now it shows the partial lead in to the story,(May archives) and of course we all know it isn't there.
If you stop using the site, readership=sponsor dollars lost. In this case it can be a direct hit against the pharmaceutical company sponsors. We are all in a demographic there and the if the companies feel they won't make money off of us, well then why be a sponsor?
So I demanded the story be re-linked or I'm done with the site. Enough people call or write and say the same thing, they may get the idea that censorship doesn't pay. Also shows low integrity and respectability of the site itself.
There are plenty other places to go read and research.
Here is a site that states specifically they do not believe in corporate sponsors--
www.mentalhealth.com~ "To avoid any conflict of interest, we have never accepted any corporate funding for our website. We believe that it is especially important that our website not be sponsored in any way by pharmaceutical companies."

Stephany, Great idea to call about.com and let them know that you'll stop reading if censorship continues on their site, which mostly is sponsored by the big pharmacuetical companies. I'll do the same and send an e-mail to the people in my support group who I know visit this site on a regular basis. The address that i found is bipolar.guide@about.com Again, thanks for keeping the ball rolling! Best, Arlen (Tulsa)