Dr. E. Fuller Torrey rips into NIMH, its advisory board and NAMI

(6-8-20) Dr. E. Fuller Torrey is again accusing the National Institutes of Mental Health of virtually abandoning clinical trials that could help Americans with schizophrenia and bipolar disorder in the short term.

Instead, NIMH, the main federal government agency for research into mental illness with a budget of almost $2 billion, has made basic brain research its priority. The results of such research will take three or four decades to show results, if then.

What’s the difference between “clinical trials” and “basic research.”

Elizabeth Sinclair Hancq, the director of research at the Treatment Advocacy Agency, which Dr. Torrey helped found, provided examples for me in an email.

• Basic research: growing cells in petri dishes and testing the effect of a particular drug on cellular mechanisms, like stopping their growth or activity. Basic research also includes animal model studies when trying to understand underlying cellular or system biology.
• Clinical trials: Testing the effect of a particular drug on symptoms and disease processes.

Perhaps the best way to see the marked difference between the two is by looking at clinical trials the NIMH is not funding. TAC listed 16 examples in a press release all of which are listed at the end of this blog.

Here is a sampling:

• Efficacy of generic drugs: Psychiatric patients being switched from brand-name to generic psychiatric medications frequently complain about loss of efficacy. NIMH should support studies of generic drug efficacy for psychiatric illnesses.

• Long-term injectable antipsychotics: In recent years, several new long-term injectable antipsychotics have been introduced. Although each was approved by the FDA for being better than a placebo, almost nothing is known about their comparative efficacy against each other. NIMH funded trials on these medications would help physicians make more informed decisions on medications for their patients.
• Long term effects: Many of the psychotropic drugs commonly administered to millions of patients in the United States were only studied for their acute effects. Very little is known about the long-term effects of treatment with these medications regarding side effects, maintenance dose, and use of blood levels. These should be systematically studied. The results of such studies might enable treatment using doses which are lower than those currently used, reducing side effects and improving medication compliance.
• Duration of treatment: Current guidelines are not clear regarding how long patients should be treated after a first episode of psychosis. In practice, many clinicians recommend stopping after one year, often increasing risk of relapse. (Studies) should be done randomizing patients to continuation of low dose antipsychotic treatment 1, 2 and three years after their first psychotic episode, to see if continued treatment reduces risk of relapse, while monitoring side effects.
• ECT: Electroconvulsive therapy (ECT) is underused in the United States compared to other developed nations. Randomized, sham–controlled studies using modern research designs should be conducted in the United States testing the efficacy and safety of ECT. This might encourage the use of this unpopular, but safe and efficacious evidence-based treatment.

Dr. Torrey wrote that NIMH funding is now skewed with 90 percent going for basic research, versus a fifty-fifty split.

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(6-5-20) From My Files Friday: In 2016, I asked Washington area management consultant Steven Kussmann to suggest ways the mental health community could be more effective in achieving meaningful reforms. Given all that is happening in our nation now, his call for action seems especially appropriate. 

Changing The Mental Health Movement From Within

by Steven Kussmann 

Less than 3% of our population self-identifies as gay or lesbian. Yet, the LGBT community created a movement that changed our nation’s definition of marriage and secured same sex marriage as a constitutional right! Change did not happen organically nor overnight. It was the result of a highly-effective social movement strategy and decades of well-targeted action.

The number of U.S. citizens with a serious emotional and mental health disorder is 10-times greater than the LGBT population. Why then do our social and political successes pale in comparison with those achieved by this community? What can we learn from them to achieve similar results? How can we apply those lessons to transform the mental health movement into a powerful engine for effective change?

The lessons are many, and their application requires a fundamental refocus of movement strategy and structure. To succeed as a force for real social and political change, the mental health community, both its leadership and grassroots network, must rethink and retool its strategy and tactics.

Here are five get-the-ball-rolling ‘lessons learned’ from the success of others the mental health community can act on now:

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(Editor’s note:  Google Analytics noted that my website recorded 200,000 readers a month shortly before the pandemic hit. Advertisers and marketing companies began contacting me. I do not accept advertising nor marketing promotions in the guise of blog posts.) 

(6-2-20) Guest blog by Joseph Meyer.

We Need To Thank the Black Lives Matter Movement

The Black Lives Matter movement is leading the protests about the death of George Floyd in Minneapolis at the hands of police officers.  Obviously, BLM is primarily laser-focused on the experiences of persons in the African American community, as its name indicates.  But, on the BLM website, its leadership asserts “we work vigorously for freedom and justice for Black people and, by extension, all people.”

The site specifically mentions ageism, expresses support for the broad membership of the GLBTQIA community, and in a summary statement acknowledges the problems faced by other groups: “We are guided by the fact that all Black lives matter, regardless of actual or perceived sexual identity, gender identity, gender expression, economic status, ability, disability, religious beliefs or disbeliefs, immigration status, or location.”

There it is—disability—and, although BLM does not specifically mention mental illness, the BLM movement has time and again been outspoken and active in standing up for the rights of persons with mental illnesses when other advocacy organizations have been mostly silent.  So I want to thank the BLM movement because I believe it has done a better job than any of the mental health advocacy organizations at peacefully, yet emphatically, calling attention to deadly threats faced by the seriously mentally ill – especially persons of color – in our communities at the hands of the police. Click to continue…

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(6-1-20) My son, Kevin, is a certified peer specialist – a person with a serious mental illness in recovery who helps others with their mental illnesses. I’m proud of him and his work.

Unfortunately and unnecessarily, peers are sometimes viewed as being adversaries to parents and families. This is counter productive. The same thinking that applies to peers can be said about parents and families. Only a parent or family member can fully understand what that experience involves. Parents handle issues differently. Some better than others. But teamwork is more productive than head butting, especially when each side should have the same goal, which should be helping an individual prosper.

The voices of family members are important. I remember vividly what a brother told me about his sister when I interviewed him in Miami for my book. He told me that his sister had schizophrenia and during the past 30 years she had been seen by two dozen psychiatrists, assigned three times that number of social workers, and had been arrested, and appeared before judges. When all of those doctors, social workers and judges were gone, he was still with her picking up the pieces.

It is important for parents to talk about their experiences. I am delighted that Randye Kaye, an author, public speaker, and mental health activist, invited two other mothers of adult children with serious mental illnesses to participate in a video discussion. Baltimore advocate Laura Pogliano and Miriam Feldman, both have written for this blog.

In addition, Kaye invited Robert Kolker, the New York Times bestselling author of Hidden Valley Road: Inside the Mind of an American Family to join their discussion. Kolker’s book chronicles the experiences of the Galvin family, a midcentury American family in Colorado Springs with twelve children, six of whom have been diagnosed with schizophrenia. Kolker’s book is a selection of the revived Oprah’s Book Club.

Thank you Randye Kaye, Laura Pogliano with SARDAA, and Miriam Feldman for sharing your experiences. Kaye is the author of  Ben Behind His Voices.  Feldman’s book, He Came In With It: A Portrait of Motherhood and Madness, will be available July 21st. Here is an NPR interview with Kolker about Hidden Valley Road.

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(5-29-20) With a third of Americans showing signs of clinical anxiety or depression tied to the psychological toll exacted by the coronavirus pandemic, suicide rates are expected to rise. The Gannett chain published an editorial this week in several of its Florida newspapers citing what it called common myths and misunderstandings about suicide. I’m grateful the editorial cited my book, noting that our mental health care system is broken. If you or someone you know needs help, please call the National Suicide Prevention Lifeline at (800) 273-8255 or email www.suicidepreventionlifeline.org. Every life is worth saving. Americans are resilient. We will get through this together. You are not alone.)

Editorial Gainesville Sun: Pandemic raises concerns about suicide

Isolation is one of the prime risk factors for suicide.

So in the era of the pandemic when isolation is being enforced, our community must confront the increased risks of mental illness.

In a typical year, almost 50,000 Americans die by suicide. From 1999 to 2018, the suicide rate increased by 35%, reported the Centers for Disease Control and Prevention.

During the Great Recession, the suicide rate increased four times faster.

Demographically, males are 3.7 times more likely to die by suicide.

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This blog appeared on my author’s website this morning, but a problem with Facebook delayed its reposting there.

(5-25-20) Memorial Day honors those who have died while serving in the U.S. Military.  That should include all those who have perished.

Does Ending Your Own Life Nullify Your Hero Status? Squabble At CIA Reveals Lingering Prejudice

Ranya Abdelsayed spent a year in Afghanistan targeting senior al-Qaeda and Taliban fighters at one of the Central Intelligence Agency’s most important bases. Less than 48 hours before she was to return home, the 34 year-old fatally shot herself in the head.

The CIA maintains a Memorial Wall in the lobby of its Langley headquarters to recognize those who “gave their lives in the service of their country,” but a recent spat reveals a lingering prejudice and stigma about mental illnesses.

The Washington Post, which broke this story,  quoted a longtime CIA historian, who retired in 2016, objecting to her name being approved and a star representing her being added to the wall:

Abdelsayed’s inclusion violates the agency’s own criteria — and her star “must absolutely come off the wall.”

The famed memorial, he said, is reserved for deaths that are “of an inspirational or heroic character” or are the result of enemy actions or hazardous conditions…“There’s been an erosion of understanding in CIA leadership for at least two decades about what the wall is for and who is it that we’re commemorating…Now we have a suicide star on the wall. That’s not what the wall is for. Suicide is a great tragedy, of course. But the purpose of the wall is not to show compassion to the family. It’s to show who in our community is worthy of this ­honor.”

Yes, you read that right: “Show who in our community is worthy of this honor.”

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