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Crazy Meds In The News

 

 

 

 

 

 

 

Hey, I guess we're kind of legitimate ourselves if we're getting mentioned in legitimate and alternative media.

 

Hey, Dr. J. Barrie McCombs, MD, FCFP, the Director of Medical Information Service of the University of Calgary, recommends Crazy Meds as a site for medical information.  I shit ye not.  Here it is from his column in the November/December 2006 edition of The Alberta Medical Association's The Alberta Doctors' Digest

Crazy Meds

www.crazymeds.us
This is a guide to psychiatric
medications, written by people
who use them. It is self-described
as being for patients who are
“mentally interesting.”

You'll need to manually scroll down to page 34 to see it yourself, as this is one of those .pdf files and/or URLs that doesn't allow me to go directly to the page number in question.

 

Crazy Meds also has a page or so in Mitzi Waltz's latest book:

Rabble rousers R us.  Just because we think that big pharmaceutical companies are rapacious robber barons who have an in with the FDA for patent-extending late approvals, jacked-up prices, and short clinical trials to suppress the incidence of side effects.  C'mon, is it that big of a deal that Zyprexa brings in billions of dollars for Eli Lilly and has been responsible for over 30% of Eli Lilly's total annual revenue some years?  Which is more than every limp-dick prescription combined.  That the meds for brain cooties are often the most profitable for the drug companies who manufacture them.  Oh, and that many prescriptions are written for the good of the bottom line of the clinic, hospital, insurance company, and/or drug company with the best pharmaceutical representative in the area instead of the best interests of the person who needs medications.  Does the fact that I bring up these issues, along with how we need these very meds to make our lives tolerable, make Crazy Meds some kind of activist media? 

 

We continue to be the Gold Standard of user generated media when it comes to bitch-slapping the pharmaceutical industry awake regarding how people who take these meds actually get information about them.  From the April issue of Pharmaceutical Executive in the article Alternative Media: Mastering Social Media we find Mr. Johnmar writing:

Although there are many barriers to overcome, a number of pharmaceutical companies are eager to use blogs, podcasts, and other tools to market their products and advance their agendas. Following is a framework pharma marketers can use to help them:

  • understand what is being said about their products online;

  • ethically engage stakeholders via blogs, podcasts, and other forms of social media;

  • flexibly participate in and respond to Internet conversation;

  • boost their return on investment.

The Real Deal

According to a study conducted by Envision Solutions, 5 percent of U.S. Internet users looking for information about the antidepressant Lexapro visited the popular blog crazymeds.org/ between mid-December 2006 and mid-January 2007. They are relying on this Weblog because it provides straight talk about the safety and efficacy of many commonly used psychiatric medications.

There is a lesson to be learned here. People turn to social media because they are looking for relevant content. Though pharmaceutical companies devote significant resources to "product.com/" Web sites, Internet users are far from satisfied. This is because they want "the real deal" about how medications will affect them and their families. The key to engaging them, building brand loyalty, and increasing compliance is listening to what people want and providing them with information they need.

 

 

Now we get into stuff where one story lead to another then to another.  So I won't be listing the stories in the usual most recent first order.  I missed this one earlier.  In article posted 31 January, 2007, Nicholas Genes, MD, Ph.D. interviews Farad Johnmar for a Medscape  article titled Get the Word Out: Communication Vital in Healthcare Businesses:

In addition to serving as an outlet for venting or sharing personal experiences, blogs are also becoming important information sources. For example, my firm will soon publish the results of a study it conducted using data from Hitwise, a leading online competitive intelligence service. As it turns out, lots of people are looking for information online about Lexapro (escitalopram oxalate), a treatment for depression and anxiety. From mid-December 2006 to mid-January 2007, 5% of all traffic from individuals typing "Lexapro" into search engines like Yahoo! and Google went to CrazyMeds.org. This is a popular blog that provides information on the safety, efficacy, and side effects of psychiatric medications. This statistic indicates that blogs and other forms of "social media" are having a growing impact on how people are finding and consuming healthcare information.

 

Mr. Johnmar's company, Envision Solutions, put out a press release about the study they did.  It got picked up all over the place:

Market Watch (The hardest one to read)
Health Wisdom
Fresno California's KFSN Action News 30's website (a Stephen Colbert favorite)
Institute for the Future
Canada's Internet News
Punjab India's Only Punjab
Japan's Tobyo Blog (in Japanese)

On WebProNews the press release was barely padded as an article titled Health, Search and Social Media.

The above referenced Institute for the Future used the press release, for the most part, as a basis for an article titled trust.  Obviously they never bothered to look at this site because we're not anonymous.  I guess the future is just like now, everything is true.  I'm soaking in the irony of the title because is just goes to show you based on that one article one can't trust the Institute for the Future.

Of course I'm part of the insidious plot To Bring Down WebMD.  At least that's what they think over at MDNG, some magazine geared towards doctors.  It's published using some freaky software that can be Mac-hostile, so be warned.  Oh, they write about all sorts of other sites.   Do a Google search on a neurological medication and get back to me on when one of those sites comes up, okay?

The one thing all of the above have in common?  None links to us!  I wonder if it has anything to do with this bit:

Internet health seekers are exposed to a significant amount of user-generated media (i.e., blogs, wikis and online bulletin boards) and frequent Websites [sic] developed by government, non-profits and corporations. This indicates that some may not vet information they find online because they are relying on sources they view as credible. Envision Solutions conducted this study using data provided by Hitwise the leading online competitive intelligence service.

This research was inspired by a Pew Internet & American Life Project report indicating that "three-quarters of Internet users who look online for health advice do not consistently check the source and date of content they find."

Let's see, I publish a bibliography of the books I used for articles, links to online articles, dates the pages were last updated.  We have an entire section dedicated to the consumer knowing about the source of our information, and the information that any website might present.  I wonder if there's a standard for this type of thing?  Why, there is!  What's that HON Code certification I've got good for anyway?  I guess the Pew people stink at the vetting and due diligence themselves.  Let's see if you find something like this on one of the sites that did get links in all of the above articles.  From the Lexapro page:

"As I already noted in the section on interesting stuff your doctor won't tell you, this European pooled analysis of over 1,600 people in double-blind studies comparing Lexapro with either placebo or Celexa (citalopram hydrobromide) concludes you may want to try Celexa (citalopram hydrobromide) if your insurance company insists upon it, or Lexapro just seems too potent.

A STEPS review (Safety, Tolerability, Effectiveness, Price, and Simplicity) conducted by highly respected Baylor College of Medicine found 10mg a day to be as effective, if not more so, than 40mg of  Celexa.  Plus at 10mg a day Lexapro comes out as actually cheaper than brand name and some generic versions of other SSRIs of comparable dosages.  But it doesn't come out as significantly better.  So this is in line with the European study above.

In spite of the above two reviews, I still think there is enough difference between Celexa and Lexapro that if Celexa seemed to almost work, that Lexapro is worth a shot.  But if Celexa was an utter failure, don't bother with Lexapro.  The other studies I'm citing show that, all other things being equal, Lexapro (escitalopram oxalate) works in one or two weeks, instead of the four weeks that is typical with most other Selective Serotonin Reuptake Inhibitors (SSRIs)." 

 

In any event, I was later interviewed for a story in the 19 March 2007 edition of American Medical News. The full text of the article is available in .pdf format at Envision Solutions' site.

But user-generated sites also ranked in the top five. The fourth-ranked site for Lexapro
traffic was crazymeds.org, a blog and message board run by a couple from Montana.

Jerod Poore, one of the site's founders, says people have come to his site seeking refuge
from drug company-sponsored information, "fear-mongering" sites saying all drugs are
bad, and "tea and sympathy" sites that let users vent but don't share research and
practical information.

"We're more relevant to the consumer because we're more accessible. We translate
doctorese into English," Poore wrote in an e-mail to American Medical News. "We've had
the misfortune of firsthand experience with the majority of medications written up on the
site. That is, until we've found the right cocktail of meds that actually work. Talk about
the proverbial long, strange trip."

 

 

 

 

 

 

We were written up in Wired's BodyHack Blog of 8 March 2007:

Crazy Meds is invaluable- a human look at the drugs and their effects. In many cases, other patients can give you a better idea of what to expect than anyone else- I'd love to see this idea taken up over more of medicine. Plus it's really funny.

 

 

Steven Wishnia of PC Mag lists us as one of their top 99 undiscovered web sites of 2006:

Crazy Meds is a helpful guide to psychiatric medications written by the people who use them, with blunt honesty, more scientific rigor than you'd expect, and a very dark sense of humor. Before you start popping Paxil (or anything else), go to Crazy Meds to check out the pros and cons.

 

of Healthcare Vox tries to explain blogs to doctors, HMOs and the like in his 23 March 2006 article Audience Fragmentation and Social Media: Why Healthcare Is Different.  Here's what he found:


I put myself in the shoes of someone looking for information about people’s experiences with the medication.  To find out, I conducted a search using the words “Strattera” and “experience” on two popular search engines: Google and Yahoo!.

What I found was very interesting.  First, blog and bulletin board-generated content about people’s experiences with Strattera was featured very prominently on both search engines.  In each case, I found consumer-generated content on the first page of each search.  
 

[...]

On Google, I found three examples.  Surprisingly, content featured on CrazyMeds.org, a popular blog that highlights patient experiences with psychiatric medications, had a higher page ranking than Eli Lilly’s Strattera Web site. 

[...]

I was then curious about what people were learning about Strattera by reading on-line bulletin boards and blogs.  Overall, the patient verdict on Strattera is decidedly mixed. I conducted a search on a new Web site, Board Tracker, which tracks commentary on bulletin boards for information about Strattera.  (Thanks to Steve Rubel for this tip.)  As you can see in the graphic to the right, there were three prominent and widely-read negative mentions about Strattera posted on several popular bulletin boards.  

CrazyMeds.org features more balanced commentary.  Readers learn about the pros and cons of taking Strattera – and about some “freaky” side effects. 
 

Just be aware of the potentially seizurogenic advertising on this site.  Ouch!

 

Alana Klein of PharmExec Direct tries to explain Crazy Meds to Big Pharma in her article of 22 November, 2005.  Apparently only the good people of GlaxoSmithKline had the cajones enough to admit they don't get it.  Their ad agencies, though, understand things perfectly.  Only the future will tell if Alana got things across to the pharmaceutical executives who are her magazine's target demographic.

 

 

This Is Hell  made mention of us back on 19 March, 2005.

 

On salon.com Cary Tennis' article  Me minus Zoloft equals what? (1 February, 2005) we're referenced thusly in a question regarding the discontinuation of Zoloft:

Is it necessary for you to go off it sometime? Why? Is it toxic over a long period of time? Is it just the expense? What benefit is there in going off the drug? Is there a possibility that you will feel not only OK but actually better off the drug? How much of your interest stems from an unexpressed wish to be finally, once and for all, completely cured?

While, again, I can't advise pro or con, here is a quote from CrazyMeds.org that made sense to me: "The most important thing to remember is this -- your symptoms have gone away BECAUSE THE MEDS ARE WORKING! It's not necessarily because you've been cured."

 

 

Here's something scary, Crazy Meds is now being used as a reference site for on-line encyclopedia.  I swear to God people have been e-mailing me now to help them with their term papers.  Everything I know is on the site, kids!

Wikipedia's entry for valproic acid (With redirects from other valproates.  Grrrrrrrrrrr.)

Wikipedia's entry for Desoxyn

Wikipedia's entry for Lithium Orotate

We're also mentioned on the entry for Brain Shivers.  And the person who wrote it is correct, a written description is more or less possible. 

 

 

In the Spokesman-Review's Healthbeat (August 2004) our speculation on Cymbalta's potential for a harsh discontinuation syndrome (since confirmed by many former users of the medication) was mentioned:

Next, Reuters reports that Cymbalta works similarly to Wyeth’s Effexor, increasing both serotonin and norepinephrine in the brain. It also may cause similar harsh withdrawal symptoms and should not be stopped cold turkey, according to www.crazymeds.us.

Crazy Meds is a site built by a self-described "bipolar, epileptic, autistic, agoraphobic spazz." I stumbled across it today. The site's philosophy seems to be: The drugs suck, but they're better than life without 'em. (This philosophy is much more graphically expressed on the site.)

Let me know what you think of Crazy Meds. Should I add it to my favorite links? Send me e-mail by clicking on my name ("Carla") below.

Alas, we have yet to make their favorite links.

 

 

Indymedia UK quoted our Luvox side effects and how it works in columbine revisited (28 June, 2004) by Captain Wardrobe  investigating the relationship between the Columbine high school shootings and psychiatric meds.  The entire piece is fear-mongering at it's finest.

 

The Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web has had a link to our Basic Information about Psych Meds pages since forever.  OK, about sometime in early 2004.

 

 

 

 

 

 

 

 



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Take care of yourself, and keep taking your crazy meds!

 

Jerod

 

If you still have unanswered questions about this or other medications, including which one is, or combination of meds are the best for you, your best bet is to ask on Crazy Meds Talk.  Better yet, if you want to let the world know how they worked out for you and want to help out others in their quest for the correct meds, join the party.
If you 
want to discuss your issues, I suggest checking out one of the various support groups online.  
Otherwise, if you're letting me know about how much you like or hate the site, or  need to let me know about medication effects in private, then just drop a note to jerod23 at gmail dot com  Honestly, I usually don't have a lot of time to answer e-mail these days.  The snide autoresponse message that may or may not hit your mailbox is going to tell you the same thing.
Another problem is that you may not get a response even if I wanted to send you one.  You see, so many dickweeds with malicious intents and too much time on their hands have appropriated the crazymeds.org domain name to use for their spam, viruses and the like.  Subsequently some lazy-ass e-mail protection software authors just go by the domain name, and not the IP address.  So I've been blacklisted because of the actions of others.  Or the software just doesn't like the domain name because of the "crazy" and/or "meds."  Or your question about a particular medication will set off spam flags.  So the e-mail just wouldn't go through regardless.  Sorry.

 

 

Hey, did you find this page all by itself through Google or some other search engine? Great! But to really appreciate the entire site, you need to start here.

 

 

 

 

Created Thursday, August 4, 2005

Last updated Saturday, December 05, 2009

 

Copyright © 2003 - 2010 Jerod Poore. All rights reserved.

 

Almost all of the material on this site is copyright © 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009 and 2010 Jerod Poore. Except, of course, the PI sheets, those are the property of the drug companies who developed the drugs the sheets are about.  And any documents that are written by other people which may be posted to this site will remain the property of the original authors.  You cannot reproduce this page or any other material on this site outside of the boundaries of fair use copying without the express permission of the copyright holder.  That's usually me, so just ask first.  That means if want to print out a few pages to take to your doctor, therapist, counselor, support group, non-understanding family members or something like that - then that's OK to just do.  Go for it!  Please.  As long as you include this copyright notice and the following disclaimer, I'm cool with it.

All rights reserved. No warranty is expressed or implied in this information. Consult one or more doctors and pharmacists before taking, or changing how you take any neurological and/or psychiatric medication. Your mileage may vary. What happened to us won't necessarily happen to you. Nobody on this site is a doctor, therapist, or a pharmacist. We don't portray them either here or on TV. Only doctors can diagnose and treat an illness. Some doctors tend to get pissed off by patients who know too much about medications, so tread lightly when and where appropriate. Diagnosing yourself from a website is like defending yourself in court, you suddenly have a fool for a doctor. Don't be a cyberchondriac, thinking you have every disease you see a website about, or that you'll get every side effect from every medication. Self-prescribing is just as dangerous.  All information on this site has been obtained through personal experience, the experiences of my friends, the experiences of people reported on online support groups, and from sources that are referenced throughout the site.  Know your sources!  As such the information presented here is not a substitute for real medical advice from your real doctor, just a compliment to it.  No neurologists, psychiatrists, therapists or pharmacists were harmed in the production of this website. All brand names of the drugs listed in this site are the trademarks of the companies listed after them in the pages about the drugs, even though those companies may or may not have been acquired by other companies who may or may not be listed in this site by the time you read this. Always read the PI sheet that comes with your medications and never ever throw them away.  If you didn't get a PI sheet, demand one.  Loudly.  Crazy Meds is not responsible for the content of sites we provide links to.  We like them, or they're paid advertisements, or they're something you should read to make an informed decision about a particular med.  Sometimes they're more than one of those things.  But what's on those sites is their business, not ours.  Very little information about visitors to this site is collected or saved. And from time to time I do look at search terms used to find it in an effort to make the information I present more relevant. Use only as directed. Void where prohibited.

 

"Everything is true, nothing is permitted." - Jerod Poore