Please Join Groundbreaking Research on Psychiatric Medications

Will Hall
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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. 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 [email protected]). 

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 protected].

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 [email protected] 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 at: http://bit.ly/25cPoSn 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, are neglected in the research. Together I believe we can change that.

So please take a moment and join these important efforts!

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25 COMMENTS

  1. I am just about to computer unplug for the weekend but I plan to help with this.

    Things are starting to change, for years they got away with denying withdrawal reactions till thousands of posts describing them started popped up on the internet.

  2. I can’t go along with anything which endorses any kind of mental health care.

    As far as I can see, it is all just the survivors of childhood familial abuses, now being sent to one sort of therapy or another.

    So the only ethical response is zero tolerance for psychotherapy, psychiatry, psych meds, recovery, or evangelical religion.

    Instead, there has to be political consciousness raising, and then action. Action means escalating conflicts, satyagraha. Without this last component, I see it all as just more abuse, people convincing you that you are the problem.

    Join My Forum, Connect, Organize, Act!
    http://freedomtoexpress.freeforums.org/survivors-of-the-middle-class-family-t243.html

    Nomadic

    • Dude no one wants your CPS protect the children “utopia” world. Many people on this website have lived the CPS nightmare. From the kid and the parent side.

      Go away spammer. Thats all you do is add a little nothing to the subject then spam your failed website.

      “Freedom to express” Users browsing this forum: No registered users and 0 guests…. That’s the way its ALWAYS going to be.

      • There is nothing utopian about protecting children. We have now the Mondale Act, and we might pass stronger laws. But if the gov’t isn’t going to do it, then we will have to set up other more expedient arrangements.

        CPS with police, handled something wonderfully where I live. And I get involved and helped make sure the guy a long sentence in our state prison.

        I was also involved in something else about a self-appointed preacher who used to brag about physical and psychological acts of abuse against his grandchildren.

        One of the points I raised in both cases, since there were evangelical churches with outreach ministries involved, is that if we don’t protect the children, they could very well likely end up targets for the outreach ministries.

        And Cat, you don’t need to be calling me dude.

        Nomadic

        • Dude, you are spammer. You add NOTHING to this website but links to your failed website.

          Legally Kidnapped: The Case Against Child Protective Services http://www.legallykidnapped.net/

          I just Googled “Mondale Act”

          Mondale Act https://abuse-excuse.com/laws/
          Repeal the Mondale Act http://petitions.moveon.org/sign/repeal-the-mondale-act

          Page after page of stories of peoples lives destroyed by CPS and moral busybodies like yourself.

          So dude , no one wants to join your cause and the proof of that is that you have spammed this website for months now with links to your failed web forum, and so far you gotten ZERO new members.

          In fact you are the only one who has posted on that website for SIX years talking to yourself. Your only page views are web bots indexing for search engines.

        • Cat, I have read your links. And yes, as most people do not know, there is an entire right wing industry devoted to trying to make any and all child protection laws unenforceable.

          I leaned of this when I inserted myself into the case of a Pentecostal man who was sexually molesting his three daughters.

          Though my involvement would last over 2 years and expanded far beyond what I had ever imagined on the way in, I helped to make sure that law enforcement knew how much the public cares about these cases and that this guy got convicted on all charges and got a long sentence.

          Most lengthy felony convictions do get appealed, though the chance of getting the conviction overturned is very small. But I am monitoring nevertheless. If by some chance his conviction is overturned, I will jump right into action again.

          Here is one persons on this forum might find especially interesting. Now a warning, this is an evil book written by an evil and completely discredited man.

          https://www.amazon.com/Waging-War-Autistic-Child-Munchausen/dp/1616086149/186-8957665-7396353?ie=UTF8&*Version*=1&*entries*=0

          This Andrew J. Wakefield is delicensed and discredited. But what he did was try to defend the parental abusers in Medical Munchausen’s Cases.

          In this case he failed, a couple living in rural Arizona with 5 children and home schooling, and having convinced doctors that all 5 suffered from Autism Spectrum Disorder.

          They had fooled hundreds of doctors. But doctors at Phoenix Chidren’s Hospital figured them out, and then acted in conjunction with CPS and got the children removed.

          My feeling is, though I know some will dispute this, that very few people end up in psychotherapy or the psychiatric system, or even in ADHD or ASD therapy, without familial child abuse underlying it.

          Nomadic

          http://freedomtoexpress.freeforums.org/survivors-of-the-middle-class-family-t243.html

          • Join my failed web forum where I push the refresh button over and over to generate fake views. Together we can overthrow western civilization ! Damn that capitalism and traditional family !

            ROTF
            LOL
            Too funny
            6 years of spamming and no new members, LMAO

            Dude that woman’s book messed up your head.

            Legally Kidnapped: The Case Against Child Protective Services
            http://www.legallykidnapped.net/ The hard hitting publication which challenges everything you know about Child Protective Services, by a CPS Whistleblower.

      • I love your name dreampainter, as I too am a painter of my dreams. I don’t know who the artist is either, but do like the maze imagery. Since understanding “mental health” iatrogenesis did start as a “puzzle” for me, which did become a maze, although not one without an amazing journey. I also enjoy the wing imagery, since I used to love flying dreams I had as a child. And I know that my research into “mental health” iatrogenesis did allow me to fly away from those harming me, and eventually get my medical records corrected, based upon my research.

        I’ve also noticed many contemporary artists create works which have the same imagery as my works, as if we are all connected within the subconscious, and as my drug withdrawal induced awakening implied. It’s kind of cool. Who knows? Not the un-insightful and deluded psychiatrists, is what we now know. But I’ve heard good things about the art therapists. And do know from many years of running art programs and teaching art to children, that it’s quite easy to see major drug interactions in children’s artwork. Thus do hope and pray we get away from drugging so many children.

  3. Psychotherapy, psychiatry, psychiatric medications, developmental disorder counseling, recovery, religion, all they do is convince people that they have something wrong with them. And more often than not, this is in the service of the parents.

    And even when it isn’t your family or mine. It is always The Family, that which is held up as an ideal, and which is used to determine who is legitimate and who is not.

    All of this undermines democracy, as out present affairs depend upon this. And all of it renders people passive, so that Social Darwinism and Eugenics can flourish, because or present form of radicalized capitalism, neo-liberalism,, depend upon this.

    http://freedomtoexpress.freeforums.org/

    Nomadic

  4. I should think finding the cause of someone’s difficulties would be the first step before prescribing potential life altering and addictive medications. Talk therapy, stress management and medical tests should be prerequisites and then options should be discussed. These drugs and others that can destroy quality of life are also being prescribed off-label without informed consent!
    Will, I’m requesting that lack of informed consent and holistic treatment be addressed.

  5. I would like to put a link to this on psych forums and get a few hundred views and maybe some more people involved should it be in the anti psych forum or living with mental illness ?

    I really got caught up in that Stop The War On Chronic Pain Patients Article under this one. Mental illness or chronic pain, seems like they always have to treat everyone like crap for some reason.

  6. I have needed antidepressants for 40 years. I was never abused or molested ….my first bout was when I was pregnant with my third child, wanted, planned for. It just came out of the blue. I don’t believe all those with mental issues were abused.
    I was also a CPS worker….neglect mostly from stressed out undereducated parents who needed s break from child rearing. Not preventable…not ways fixable. I had to take an infant from a crack-obsessed mother. Not preventable. Nomadic, I think you have some strange theories.

  7. 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.

    Is the survey meant to include people who have taken “antidepressants” and/or “anti-psychotics,” or only people who have taken both? The survey itself reads as if it only means to include people who have taken both:

    WHO CAN TAKE PART?
    You can take part in this study if you meet all of the following criteria.
    1. You have been taking or have previously taken an antidepressant medication continuously for longer than one month for any reason
    2. You have been taking or have previously taken an antipsychotic medication continuously for longer than one month for any reason (such as Olanzapine, Risperidone, Clozapine, Quetiapine, Haloperidol etc).
    3. You are aged 18 or older
    4. You are not currently compulsorily detained in a psychiatric hospital
    5. You are living in the community

    (emphasis added to both quotations)