The Foundation for Excellence in Mental Health: Finding Our Way in a World of Conflicting Messages

Yana Jacobs
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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!

9 COMMENTS

  1. You sound, so proud of what you’re doing, and so very happy to be doing it, which is so very refreshing. Truly helping others does bring joy, mental wellness, and inner peace, doesn’t it? (Which is why those psychiatrists who’ve been harming others for profit based on fraud, are so very angry. But, of course, their continuing to live in denial, and with such violent feelings of angst, is bad for their “mental health” in the long run.) Thanks for all you’re doing, and I’d love to help in any way I can. Best wishes.

  2. “Though many people report that they find medications helpful when they are in an extreme state (mostly to help them sleep ) ”

    Many people if not most people that end up inpatient psychiatric are there because of sleep deprivation for what ever reason.

    I will never get why when a person has obviously lost it from lack of sleep and mental exhaustion they insist of waking up everyone for blood pressure checks often in a rather rude dept of corrections kind of way. Get up line up ! With an air of “or else” in the tone of it real early in the morning.

    But its very important to check blood pressure in a hospital !!! Really ? If so then tell me why don’t they wake up and line up people in the medical section of the hospital in that rude manner ?

    It just shows how stupid inpatient psychiatric “care” really is. You have people that have obviously blown a mental fuse because of lack of sleep so when they finally settle down and start the healing process of they get jolted awake like they are in some sick boot camp punishment program.

    And for the depressed patients, no you can’t have any coffee like you have started you day with your entire adult life , how is your mood this morning ??

  3. 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

    I knew this before I read any of this stuff. I took medications for years including Clonopin and Zyprexa . Ouch that hurt . Its was hell on earth getting off all that stuff but I did, I also quit drinking. I was doing real well.

    I had a nasty drinking episode, all day every day for over a week till I couldn’t drink enough to sleep without throwing it up. Enough of this so I went to the hospital and got sent to an inpatient psychiatric center for detox, I thought, until they attempted to put me on a mood ‘stabilizer’ an anti psychotic with a Haldol tablet on top. I refuse ! We will stick you with a needle if you refuse ! Do that to me and just hope you never ever meet me outside this place. You guys park in that lot out back right ? I said all that cause that needle threat scared the hell out of me. So did that huge dose of pills, I wanted to sleep but that was WAY to much. I was taunted several times with the words “injectable form” during my stay.

    So what would have happened if I had caved into the threats ? I would have spent at least a week in a zombie daze and then when I got out I would be faced with getting off the stuff and have all kinds of rebound insomnia and anxieties that leads to getting “to tired to rest” and possibly getting all screwed up all over again.

    That was not my entire reason for my adamant refusal, Clonopin and Zyprexa withdrawal and years of iatrogenic hell played a large part . WTF very foolish of me to drink myself self sick yes, I will pay the bill, but no way was I going down the keep you sick with psychiatric drugs road again. No way.

    They screw up your ability to sleep naturally by giving you to much of those drugs then when you try and quit the drugs due to the zombie effects you get wicked rebound insomnia keeping you awake till you either take more or bug out.

    Thats how that scam works.

  4. “Our biggest challenge is to find new interest in the philanthropic world that will support our work.”

    I’m sure you are not alone with this!

    Sounds like quite an operation. Looking at your board of directors, however, I’m wondering if this is really the kind of profound change we’re seeking–which, to me, would be like a pole shift, in that society would need to do a 180 in perspective. Quite challenging, of course, in many respects; but to my mind, that’s the journey to take, individually, in order for it to translate, at large, into society.

    In any event, I wish you great luck with this, looks very ambitious.

  5. Yana,
    This is a fantastic set of initiatives that you should be very proud of. I am very happy and heartened to read this article… as someone who makes their own small contribution in maintaining a recovery blog while talking to quite a few people who contact me through my site (http://bpdtransformation.wordpress.com) and who are seeking a more hopeful, effective way of conceptualizing and recovering from with severe emotional problems.

    The integrity, humanity and goodwill of your approach shines through in a way that is simply not possible for the initiatives that are corrupted by Big Pharma/APA money. Keep it up.

    • Yana, I would like to say that I find this statement, “Though many people report that they find medications helpful when they are in an extreme state (mostly to help them sleep )” a little misleading.

      This may be true in an absolute superficial sense. But I think it is more accurate to say, “many people are helped by the placebo effect of drugs, but there is little if any evidence that drugs are much more effective than sugar pills in terms of any real action”. This is what the research of Irving Kirsch and Joanna Moncrieff says about antidepressants. Saying it the way you said gives the misleading impression that the drugs actually do something significant much of the time (beyond the placebo effect). But the evidence suggests that they do not.

      Secondly, calling these drugs medications is misleading: they are not medications. Medications treat a specific medical illness. So, attend to that 🙂

      I challenge you to report on these things a little bit more accurately in your next article.