SSRIStories.org was created by a team of volunteers who wish to build on the legacy of Rosie Meysenburg. Rosie and two colleagues, Ann Blake Tracy and Sara Bostock, compiled the original collection of stories and built the website SSRI stories.com. Rosie maintained it almost singlehandedly from 2006 until her death in March 2012.
Starting with the original collection of stories from Rosie’s site, we have updated the “look and feel” of the site, added stories to the original collection, and developed a classification system to capture information of potential interest, along with site search capability.
In 1992, Rosie was prescribed Prozac to help her quit smoking. The drug caused her to experience extreme changes to her state of mind and personality and after 8 weeks on the drug she had to be hospitalized. She was not aware of how dramatically her attitude and behaviour had changed. Fortunately, her alert husband, Gene, suggested that Prozac might be the cause. Rosie was so alarmed about her experience that she contacted a local suicide prevention group that in turn put her in touch with a Prozac survivors support group. This group believed Prozac was responsible for a number of suicides and other awful acts. Rosie wrote to the FDA, and began a campaign to find and share information about the effects that SSRIs have on some people. The group gave Rosie contact information for Ann Blake Tracy, founder of the International Coalition for Drug Awareness, and within a year of Rosie’s hospitalization they were working together to raise awareness.
In the mid 1990s, Rosie took advantage of the launch of the world wide web to build contacts and collect information about Prozac and other selective seratonin reuptake inhibitors (SSRIs). In 2004 the FDA did post a “black box” warning that SSRIs can cause suicidality in people under 18, but they did not go so far as to recommend that the drugs not be prescribed to young people. By contrast, in 2003, the U.K. government banned the prescribing of all SSRIs except Prozac to children under 18, because for young people, the risks of damaging side effects are high and the effectiveness of the drugs negligible. Ironically, Prozac, the exception, carries a warning that the drug is effective for, at best, one person in ten.
Over the years, Rosie collected over 4,800 news stories in which SSRIs were featured. Her site highlighted the connection between school shootings and psychoactive drugs, a connection that might not otherwise have been made. Similarly, she made the unexpected discovery from her data that in reported cases where woman teachers were accused of sexual liaisons with male students, SSRIs were often mentioned. She reported that many people contacted her to thank her for allowing them to figure out that drugs could have been the cause of family tragedies such as the suicide of a loved one, information that they would never have got from the prescribing physicians.
In 2010, Rosie learned that she had cancer. Still, she kept finding stories for the site as long as she could. She had corresponded with Dr. David Healy over the years, who recognized the site’s importance, used it to supplement other research, and claimed it was an inspiration for RxISK.org. She told him her story and he agreed that he would find a way to continue the website after she could no longer manage it. If not for the courage and persistence of this extraordinary woman, the SSRI Stories website would not exist and there would not have been a place for ordinary people to go and figure out some of the important links between SSRI use and particular tragedies.
Ann Blake Tracy
Ann Blake Tracy founded the International Coalition for Drug Awareness and the site drugawareness.org. She also wrote the 1994 book Prozac: Panacea or Pandora? These were among the few resources available for many years for victims who made the connection between their medication and violent or bizarre behavior. Ann recorded the stories of the people who contacted her site and learned to recognize cases in which the most plausible explanation for bizarre or violent behaviour was psychiatric medication, especially antidepressants. When she found these cases in the news, Ann would often contact the victims to help them and, if she learned that SSRIs were involved, she would try to ensure that people understood the implications. In 2014 many people still fail to make the connection between the prescription of antidepressants and the suicide or other tragedy involving their loved one. Before the new millennium, even fewer people were. Over the years Ann has conducted many radio interviews about her findings.
Ann also advised people on how to get off antidepressants, another area where there is serious lack of awareness and few physicians are trained either on the dependency that these drugs create or the terrible withdrawal effects associated with coming off them.
Shortly after losing her daughter Cecily to Paxil in 2002, Sara tried to get information about SSRIs on the internet. Her attempts led to contact with Mark and Cheryl Miller, who had lost their 12-year-old son Matt to Zoloft. Sara found Mark through Ann Tracy’s site which he was helping to maintain. At that time, Rosie was also working closely with Ann and the International Coalition for Drug Awareness, and she and Sara got to know each other.
From Rosie Sara gleaned important information about the drugs her daughter had been given, and the dangers of SSRIs, alone and in combination. Rosie had become something of an expert from her own research and experience.
Sara joined Rosie’s list serve, an e-mail distribution of media stories involving SSRIs that Rosie sent out to over fifty people, mainly journalists. Sara realized the cumulative power of these stories and wanted to find a more powerful way to organize them for public consumption. When the FDA called an open public hearing in 2006 to address the issue of suicidality in young adults, this was the spark she needed to make it happen. She hired a computer science college student to create an online sortable database based on a prototype Rosie’s husband Gene had created and was hosting on a private site. Sara came up with the name SSRIStories, bought the domain name, and paid for webhosting for over five years. In the fall of 2006 she went to the FDA and did a brief presentation at the hearing hoping to garner media attention to the site and the large number of tragic stories involving SSRIs. Following the hearing she was interviewed several times and also appeared in a couple of documentaries, bringing publicity to the site. For many years she did not search for or load stories onto the site, but she did help with correspondence coming into the site and continued to do interviews. The site received many pleas for help.
Maintaining the site
After Rosie’s death, Dr. David Healy arranged with Rosie’s husband, Gene, to assume responsibility for the site. Dr. Healy recognized its importance, and its tie-in to his own site, RxISK.org. As described in his 2012 book Pharmageddon, he realized that people need an independent source of information about the side effects of their prescription medications. Physicians too often do not have the time or access to all the relevant information, and RxISK.org was established to allow patients to give their own experiences with prescriptions and get feedback from a comprehensive database that includes side effects not included in in most medical literature. The site also allows anyone to research these medication effects in a number of innovative and user-friendly formats.
SSRIstories.org is now maintained for Dr. Healy by Julie and Peter Wood, who lost their son John David to a combination of prescription drugs. When he was 16, John David was prescribed Dexedrine at high doses for 4 years with no break. When he decided to quit the drug, his doctor did not warn him to taper off. He quit cold turkey, suffered an episode of psychosis, and attempted suicide. Not recognizing that John David had suffered a predictable withdrawal effect, a psychiatrist prescribed him Risperdal, Ativan, Immovane, Celexa and Effexor. He could not metabolize all this stuff and he deteriorated rapidly. The psychiatrist attributed his loss of cognition, rapid weight gain, suicidal thinking, alcohol craving and other terrible side effects to “psychotic depression”. All the toxic drugs destroyed John David’s body and his mind. He lost his university degree, his job, his theatre career, his hope, and finally his life. Later, after reading their son’s medical files and several books, including Psychiatric Drugs Explained by Dr Healy, Julie and Peter realized what had really happened to their son.
The Woods are assisted in maintaining SSRIstories.org by Anne-Marie Kelly, Tom Richards, and one of the original site founders, Sara Bostock.