Psychiatric medications such as antipsychotics and antidepressants account for a huge number of published research studies. This existing research, however, is almost exclusively constrained within a medical model approach, purporting to evaluate medications as treatment for biological brain disorders, and designing studies accordingly. The disease, and how medications presumably affect it, is at the center — with pharmaceutical company financial interests not far behind.
That paradigm is starting to change. New research initiatives are emerging that put the experience of patients at the center, and seek to understand how people relate to and understand their medication use. Three new studies, with no pharmaceutical company sponsorship and with leadership from people who have ourselves taken these medications, are seeking your involvement: studies by John Read and colleagues, the Foundation for Excellence in Mental Health Care, and Maastricht University.
John Read’s study: Reed recently published, with Kerry Gibson and Claire Cartwright, one of the largest studies of patient experience of anti-depressant medications, “‘In my life antidepressants have been….’: A qualitative analysis of users’ diverse experiences of antidepressants.” Sponsored by the University of Auckland, it’s available online here. Researcher Miriam Larsen-Barr has also adapted this survey to explore experiences of antipsychotics and withdrawal, and her results will be published soon (you can reach her at firstname.lastname@example.org).
Now Read and colleagues have expanded their efforts and launched “The Experiences of Antidepressant and Antipsychotic Medication Survey” internationally, to document details of people’s lived experience with medications and explore how medications fit into their own understanding of recovery. The survey is live, and if you have ever taken anti-depressants or anti-psychotics, now or in the past, you can take Reed’s survey here.
Read needs help with spreading the word; please share the link in whatever way you can, and if you can help gather involvement and promote the survey please contact him at email@example.com.
Foundation for Excellence in Mental Health Care (FEMHC) study: More than a year ago I approached survivor researcher Nev Jones to initiate a study on psychiatric medication withdrawal. The idea was inspired by years of discussion with people around the coming off meds process, the huge international interest in the Harm Reduction Guide to Coming Off Psychiatric Drugs published by Freedom Center and The Icarus Project, and MIND’s Coping With Coming Off Study. The aim of the study is to help fill a huge gap in research on psychiatric medication withdrawal: how people did it, what obstacles they faced, and what benefits they experienced as a result.
The study has evolved, and now through Live & Learn and the Human Services Research Institute we were able to get $50,000 from FEMHC to fund the study, with Laysha Ostrow, Vanessa Krasinski, Lauren Donahue, Lauren Jessell, Bevin Croft, Dina Tyler, and myself (Monica Cassani of Beyond Meds also made early contributions). Please stay tuned as the survey will be live soon (For info email contact@LiveLearnInc.net or visit www.LiveLearnInc.net/pmdr.)
Maastricht University Study: I’ve also recently begun work with Jim van Os at Maastricht University, John Read of the University of East London, and others on a “World Antipsychotic Withdrawal Survey,” focusing on coming off drugs prescribed for psychosis. Typically anti-psychotics are given with the injunction for life-long use, despite the desire to come off and the reality that many people can live without them. The Maastricht study is just in its formative stage, and I need your help!
Here’s what you can do: I’m crowdsourcing the design, and I invite you to go to an online form and share your thoughts about what should be in this study and the kinds of information we should gather. Anyone can offer their input in survey design, whether or not you have taken antipsychotics or whether or not you are a professional or clinician. I’m especially inviting input from survivors/users/ex-patients who have been in the system, and would like to hear from everyone; I’m also inviting research collaboration with the project. Contribute your input to the Maastricht study here You can also leave your email address if you’d like to help in other ways including getting the word out and sharing in your networks.
Science has too often been about patients without their involvement. Some of the most important topics to us, such as how psychiatric medications affect our lives, is neglected in the research. Together I believe we can change that.
So please take a moment and join these important efforts!
Note from Beyond Meds:
*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. Really all doctors should always be willing to do this as we are all individuals and need to be treated as such. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up
For a multitude of ideas about how to create a life filled with safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page.