The Case of the Missing Schizophrenia

Included in the National Institute of Mental Health’s (NIMH) Outreach Partnership Update on October 1, 2014 was an FOA (funding opportunity announcement) on "Self-Management for Health in Chronic Conditions". This funding opportunity references a 2012 Institute of Medicine (IOM) report "Living Well with Chronic Illness: A Call for Public Health Action".

I remember this report well because peer support was discussed several times and I was working on my dissertation. The report identified certain chronic conditions in its recommendations:

"The committee does not recommend a specific set of illnesses on which to focus public health action. Instead, it identifies nine “exemplar” conditions that are diverse yet have various factors in common, including significant effects on the nation’s health and economy. These are arthritis, cancer survivorship, chronic pain, dementia, depression, type 2 diabetes, posttraumatic disabling conditions, schizophrenia, and vision and hearing loss."

NIMH backs down from leading NIH research on mental disorders

Something wasn't quite right about the National Institute of Health (NIH) FOA. Upon closer examination, the NIH listed these conditions as identified by the IOM in its report:

"arthritis, cancer survivorship, chronic pain, dementia, depression, diabetes, posttraumatic disabling conditions, and vision and hearing loss."

In the IOM's list of "exemplars", there are nine conditions listed. In the NIH's version, there are eight. Of the nine IOM conditions used as examples, four of the nine could be called specifically "mental health"-related (dementia, depression, posttraumatic disabling conditions, and schizophrenia). In the NIH's version, three of eight are mental health-specific (dementia, depression, and posttraumatic disabling conditions). I was immediately on the case of “the missing schizophrenia.”

Upon even further inspection, I realized that the NIMH was not one of the institutes sponsoring the FOA on self-management--despite 4/9 (or even 3/8) of the conditions being mental health conditions. This was starting to look like some conspiracy where the NIMH doesn’t believe in self-management of anything, and the NIH can’t even think about schizophrenia as a self-manageable condition without guidance from its Institute of mental health.

Self-help and Congress

Peer support is inherently a self-help intervention; many more specific peer support interventions (e.g. Wellness Recovery Action Planning [WRAP]) are about managing one's own life and affairs--even in a state of crisis (WRAP includes a specific "crisis planning" section, and is being used in peer support groups for suicide prevention such as the Hope Group in San Francisco).

Popular political debate right now (in the U.S. Congress and in counties in California) is around the inability of people with "serious" mental disorders such as schizophrenia to self-manage, to self-determine. What is in reality a lack of resources for voluntary community-based supports is framed as a need for forced medication against one's own will.

I believe one of the greatest injustices a society can commit is to make certain members doubt their own reality, and then make them prisoners in their own minds.

I've been there. I was given a legal order for anti-psychotics, and my mind was so dulled by a combination of mood stabilizer and antipsychotics already that I thought I was stupid. Doctors told me that with an increasing number of manic episodes, my brain would deteriorate into more and worse episodes. So at the age of 17, I thought my brain broke itself and this was my fate: a memory so poor I couldn't even remember my favorite lines from Shakespeare, an inability to write and create which was always my best talent, a sense of dullness and fog that wasn't sadness but never lifted. 

“Strategic” planning by politics

Later last week, after reviewing this funding opportunity that should have included a near majority of mental health problems where one was conspicuously omitted and the grants not sponsored by the National Institute of Mental Health, I received a draft of the NIMH's Strategic Plan--the guiding document for the agency’s funding priorities.

In previous years, the share of NIMH funding and attention that goes to the Division of Services and Intervention Research (DSIR) has been smaller than others. In 2013 I wrote: "The FY 2012 budget justification shows that services and intervention research were allocated a third of the amount of money given for basic neuroscience and genetics research" [not published due to fear for my career at the time].

The new plan was even more shocking: services and intervention research seem to require a biological component (biomarkers). The context around this suggested that statistics are based on population averages and we aren't so good at getting people the evidence-based psychosocial practices that already exist even when the statistics suggest they would work for a lot of people.

It is a terrifying kind of populism that leads to public support of these kinds of policies. You remind Americans that they don't understand science or policy; then you tell them even the scientists and policy-makers [the “elite”] don't know! Americans do not favor intellectual ideas they don't understand, nor are we a people that need "stinkin' experts" making decisions for us.

But stikin’ “experts” making decisions is exactly what happens in situations like this.

I was quite thrilled to have participated in electing President Obama in 2008. He is very smart, and that was a nice change for me. There was something refreshing about the media saying he needed to be "careful" about not seeming too smart, but knowing he was going to get [re-]elected anyway. What a victory for the intellectuals of America!

It is very important to recognize that elected officials are not--and cannot be--experts in the content of every policy area. They need to be good at recognizing expertise and making decisions based on others' recommendations. A democracy this size is too big to be run any other way. I did not expect Obama to be an expert in mental health or mental disorder, but I certainly did not see the BRAIN Initiative--with a runaway train trailing it-- coming either, with a trail of celebrities and corporate interests driving it.

NIMH apologies to dying youth

Later in the week I got the Director’s Blog called “Atonement” and a research update stating:

Notably, treatment with antipsychotic medication, even after brief exposure (participants’ average exposure was 47 days), was associated with an increased risk of metabolic syndrome, which is a major risk for future cardiovascular illness.

The average age in the study was 24 years old.

The Director’s blog post is called “Atonement” because “Mental Illness Awareness Week” this year started on Yom Kippur. For those who are not practicing or knowledgeable about Judaism, Yom Kippur comes ten days after the New Year (Rosh Hashanah). Those ten days are the “Ten Days of Awe.” During those days, you are to ask for forgiveness for your wrongdoings from the people you have wronged. You ask three times, and if the person refuses to forgive you, you are then permitted to ask for God’s forgiveness on Yom Kippur so that your fate is sealed for the coming year.

One reason I have never fulfilled this practice even though I make a list of apologies every year is because to me true atonement cannot include rationalization or explanations. As someone who thinks about things, I explain my own behavior to myself, and as a very honest and direct person, can’t help but share this “insight.” But true atonement is pure sorrow and real love with no excuses.

Science needs rationalization, explanation, justification, and replication. Good thinking is a necessary component of good science.

The blog post by the Director argued that, most of all in mental health, we need “humility” – there are things we don’t understand, and there are things we understand but don’t or can’t yet do. The lynchpin of the blog post (to me) is the statement: “Translation takes time.”

Who by various slow decay by metabolic syndrome?
Who by barbiturates and non-barbiturate antipsychotics?
Who in these realms of love that are “stronger than financial interests” –Rep. Tim Murphy (R-PA)
Who by accident including suicide? Who by his own hand?
Who in solitude and social isolation and poverty?
Who for his greed?
Who in power?
Who shall I say is calling?

(Adapted lyrics from Leonard Cohen’s “Who By Fire?”)

Who in power should I say “is calling?”

The “Atonement” post is interesting in juxtaposition to my above interpretation of the Strategic Plan because it implies that scientists (experts) know something but are still working on letting the rest of the population in on the benefit. I have to say that I have sat next to Director Dr. Tom Insel and heard him tell people “we are not endorsing drugs in the water.”

Everyone interested in America’s attitude toward Communism recognizes this as a pointed “joke.” But no decision in a democracy is up to one person, certainly not at that level of the government.

But you look around over the past decade in particular—a time where many terrifying things have happened in American society which I believe have actually lead to public consciousness-raising as an “unintended consequence”—and wonder: “If the experts are not making decisions, who is?”

I hear a lot of anger by academics and advocates about the direction of the NIMH toward purely basic science and neuro and genetics research. I admit I tend towards optimism and naiveté just to keep hoping things will be better for everyone—or at least stay open to alternate hypotheses and evidence. Personally, I wonder if that’s a bit misguided to identify an agency like NIMH as any kind of “enemy” and start wondering who for his greed and power is calling them?

What next?

I know that there are comrades and colleagues that see this inter-tangling of curious interests and statements and think about the broader implications for society. The root of the causes have so much power and greed behind them that most people can only bear to see the immediate—a federal agency in the Executive Branch, the “Psychiatric Industrial Complex” (i.e. American Psychiatric Association and its membership), a single Congressman, or any other pawn in the game. I don’t see fear of speaking out as about fear of one’s own career anymore; it is simply the inertia that overtakes people when they realize the enormity of the issues.

I promise you that speaking up can never be worse than having metabolic syndrome at 24 years old just because you wanted some help.