Every day we read, on the one hand, another compelling headline touting “news” of a “scientific breakthrough” that claims to have discovered the “cause” of “mental illness,” while another headline tells of researchers uncovering egregious falsification in the clinical trials of the pharmaceutical industry. The list goes on and on. Though many people report that they find medications helpful when they are in an extreme state (mostly to help them sleep ), given that there is as yet no scientific evidence confirming a specific disease/illness process underlying “mental illness,” and evidence that most if not all of the perceived effect is comparable to placebo, the fact remains that any positive effect of these meds are based on theory, while their harms are well-established. We also know that the Diagnostic and Statistical Manual – originally created as nothing more than a reference tool – to give people labels of various psychiatric disorders as if they are scientifically validated disease processes, is a misguided process that results in bad treatment.
I for one have always been guided by my gut, my own inner truth, based on my personal experience that is deeply rooted in human relationship and connection. I have never met two people who were identical and thus believe that each person needs to be met as a unique individual and together with a good connection we can explore what may be causing difficulties in ones life. You can read a bit more about me here.
As always, I love it when the founder of MIA, Robert Whitaker speaks up and writes a blog. January 27th, 2016 was no exception; I really appreciated reading this blog in particular, as he was responding to a challenge to state his true opinion about psychotropic drugs. True to form, Whitaker honed in on the essential issue, “selective use”/no use of psychotropic medications. One of our objectives at the Foundation for Excellence in Mental Health Care (FEMHC) is to disseminate this information, as well as to continue to fund research and study this area.
I’ve had the good fortune to spend time with Bob and discuss some of the challenges we are all faced with, and try to answer some of the big questions; How do we get the facts out there? How do we educate the prescribers, the providers, the service users and their family members about the truth so that we can all make “informed decisions” that are based on fact, rather than myth? Most importantly, how do we guide people to make decisions that will “do no harm”?
In 2011 Whitaker was thrilled when he was invited to speak to a diverse group of people who had read his book, Anatomy of an Epidemic. They had come together, inspired and fired up; they wanted to do something about what he was reporting, and thus the Foundation for Excellence in Mental Health Care was born. You can read about this historical event here.
We continue to discuss the many and various ways to tackle this daunting but necessary task. We host symposia and debate the latest scientific evidence. We fund unbiased research (i.e; no commercial, that is, pharmaceutical interests) and implement pilot programs that de-emphasize medication, instead and implement psycho-social models wherein people feel heard and have mutual relationships, and are able to seek affordable help when needed.
What Bob didn’t mention in his Jan 27th blog is the work being done today at FEMHC that embraces Whitaker’s reviews of the scientific literature in the mental health field, and points us in directions that the mainstream establishment continues to ignore.
Our position is that these medications should only be used at a minimum – and only if deemed necessary by the individual – and then reduced and taken off completely as soon as possible. Whitaker and others refer to this as “selective use.” However, the definition of “selective” and “minimum” remain open to a wide range of interpretation, depending on one’s theoretical perspective.
The best advice continues to be; review the evidence, and make your own “informed” decision. What we know at the Foundation for Excellence in Mental Health Care (FEMHC) is that the best evidence shows that long-term use of antipsychotics worsen long-term outcomes. Correspondingly, people who do not take any medications, or take them only briefly – regardless of the severity of their initial diagnosis or prognosis – have much higher rates of recovery, and their overall quality of life is better.
While the battles wage on in the press, and people continue to debate the news in forums and social media, we at FEMHC are working diligently every day to stay the course we set out on in 2011: To fund more research on the long-term effects of medication, to fund research on the best ways to discontinue medications, to implement pilot programs that will use alternative therapies (without medication) to support people’s journey to their own recovery, to hold symposia that will foster dialogue, and to produce new protocols for selective use of medications, and guidelines for time-limited use and how to discontinue use.
What have we accomplished to date? We are nurturing an incredible range of funds—now 32 of them, some more advanced than others and each with unique characteristics, goals and even personalities. We have heard many times that there is nothing like FEMHC out there in this regard. We have research projects with major universities and medical schools. We have programs ranging from peer supports like Hearing Voices Network, led by Gail Hornstein, PhD and Jacqui Dillon, PhD from the UK, to family supports like Families Healing Together. We funded the first pilot program in the US for Open Dialogue through Advocates Inc., led by Dr. Chris Gordon’ Collaborative Pathway – a critical demonstration of how Open Dialogue can be applied in the United States. We have research projects lodged at the University of Massachusetts that provide unbiased evaluation of the effectiveness of Open Dialogue, as well as an Open Dialogue clinical manual and fidelity scale that will enable future groups to replicate Open Dialogue. This is being worked on by Douglas Zeidonas, MD and Mary Olsen, PhD.
We co-sponsored the national directory of early psychosis projects with Portland State University School of Social Work, that will serve as a guide for using Open Dialogue approaches to influence the national standard of care for youth. Early on we sponsored a literature review by Harvard researchers that highlighted the differences in children’s medication practice standards in the US compared to the UK. The Healing Voices film project is moving toward national release and provides a critical perspective that lays the foundation for much of the rest of our agenda. And the Mad in America Continuing Education Project, with a solid initial catalog of courses, is ramping up its marketing plan to reach a much broader audience of practitioners in the US and possibly Canada. The Harrow Study found that people diagnosed with “psychotic disorders” who used medication in low dosages for a short time – or didn’t use medications at all – had the best success with recovery.
We are funding a pilot study that looks at the first-hand experience of people coming off of psychotropic medications. This pilot study will be the “seed” that fosters more in-depth and robust research funded by larger federal grants in the future. The study is being conducted by researchers and practitioners with “lived experience,” led by Laysha Ostrow, PhD, and a team that includes Vanessa Krasinski, MSN, RN, Will Hall, MA, DiPL PW, and Dina Tyler. We hope that those of you who have had the experience of coming off psychotropic medications will participate in the on-line survey when it becomes live or, better yet, in an in-depth interview. Stay tuned for the results later in 2016!
Our advisory funds continue to grow with diverse goals that include: multi-nutrient and nutrition research fund, Intentional Peer Support, Gnosis House Retreat Fund-an Alternative residential program modeled after R.D. Laings work, Open Path Psychotherapy Collective, which offers sliding scale therapy around the US and many more innovative projects. We are both inspired and challenged each day as we stay the course and keep our eye on our mission; research, educate and implement new models of care.
I joined EXCELLENCE in 2014. It has been an exciting endeavor, packed with amazing people, amazing stories, lots of heart, and also many challenges and obstacles along the way! Our biggest challenge is to find new interest in the philanthropic world that will support our work. In order to do that we need to believe that “Excellence” is not achieved by following the “middle way,” especially when that “middle way” is one that has been paved with false hopes extracted from the vulnerable with false promises.
“Excellence” is achieved by heading in new directions; ones that others may want to, but are afraid to try. Excellence means striking out into the wilderness, with faith and hope that others will follow and/or find you there. It’s not easy to change the world! But excellence isn’t about changing the world; it’s about creating a new one, where we don’t live on false hopes; we live on simple truths we have always known, and learn again every day: that we can’t eliminate risk or suffering; we can only share them.
We are zig-zagging our way to accomplishing a hefty mission, and take delight in learning together as we go.
Meanwhile our passion and commitment are strong and I will report back with more exciting news from FEMHC in the coming year!
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.