Robert Spitzer Apologizes

Robert Spitzer -- some people call him the Father of Modern Psychiatry.  In 1980 he took the DSM II, widely criticized for unreliability and lack of validity, and as editor of the DSM III, turned this obscure publication of the American Psychiatric Association into the standard reference work that defined every psychiatric disorder we've got.  It was research-based.  It listed objective criteria.  It was honkin' big, but it could be understood, not only by researchers, but also by practitioners.

Spitzer's acolyte, Allen Frances edited the DSM IV, which added a lot of information, but did not change Spitzer's basic framework for how these diseases are characterized.  Frances was a consultant for the DSM V, until he quit, basically because the new editors started to rethink things.  Frances now leads the charge against the DSM V, which has delayed its publication.  I won't develop that theme right now...

Robert Spitzer is the Man.

With Great Power Comes Great Responsibility

Trayvon Martin and Soul-Searching - Not Gonna Happen

Two things struck me about this message.

The first was the more widely quoted, If I had a son, he would look like Trayvon Martin.  There is a photoshopped poster circulating on Facebook, Trayvon included in the Obama family photo.  It brought to mind immediately the young men I know who look like Trayvon.  I don't want to write their names, fearing, like O-lan from The Good Earth, that to speak such praise as they deserve would tempt the jealous gods to do them harm.

Their mothers are among my closest friends.  I can hardly speak of Trayvon Martin in their midst.  What it must mean to be the mother of a fine young African American man.

The second was a minor note, a hidden note, one that will be forgotten, was forgotten as soon as it was said, All of us have to do some soul-searching.

We Do Not Search Our Souls

Of all the words that this shooting has birthed, all the pundits and opinions, soul-searching is not among them.

Dopamine - Can't Live Without It

Dopamine -- It's what gets the lab rat turn to left at the T, race down the hallway, make a flying leap at an 18" wall, snag the ledge with its little claws, and struggle over to fall to the other side and win those four food pellets.  If you artificially deplete the lab rat's dopamine, it will turn right at the T and settle for the two pellets lying on the floor.

Dopamine -- It's what got you out of bed this morning and to work on time.  Or if your dopamine levels are depleted, you pulled the covers over your head, while your spouse pleaded with you to go back to your therapist.

Dopamine -- It's what got you out of the house early to redeem that two-for-one mocha coupon at your favorite coffee shop on your way to work, and as long as you were there, might as well order that banana chocolate chip muffin.  Bananas are good for you, right?  Or if you just never got into the habit of that particular coffee shop, and it's not on the way to work, and you really like the French Roast you have at home anyway, then your dopamine never got you fired up, and the coupon went to waste.

Grief/Depression IV - Not the Same/Maybe Both

So a woman goes into the doctor's office, three weeks after her husband died. I got through the funeral just fine. But now I feel awful. There is this ten ton weight on my chest. I'm exhausted; I don't have the energy to wash the dishes. I'm trying to pack up my husband's things, and I am too weak to pick up his shoes. I can't eat. Sometimes I get hit so hard with this wave of anxiety, I think I'm going to throw up.

What are the chances the doctor will say, Of course you feel awful. These are all very natural symptoms of grief. You just need time. But if you still feel like this a month from now, call my nurse and set up an appointment. What are the chances the doctor will not pull out the stethoscope and listen to her chest?

Answer: It depends on whether the doctor is stupid.

Or a psychiatrist.

These are classic symptoms of heart disease. There is significant overlap between the symptoms of heart disease and the experience of grief. But there is no Bereavement Exclusion for a diagnosis of heart disease. Instead, family physicians and cardiologists take the time to examine whether the person presenting these symptoms may have both.

Hey, Jesus - Happy Hanukkah!

I must be one of ten people with mental illness in the United States of America who does NOT have holiday trauma issues.  My personal desperate darkness starts each year in late July and breaks some time in late October, with mild depression fading out through November.

Thanksgiving to New Year's is pretty much my best time of year.

Nevertheless, this year I have been sad, not depressed really, just sad, as I read on Facebook the hostility that has come to be the litmus test of Christian fervor.  Evidently inspired by Fox News, Merry Christmas is no longer an expression of joy and good cheer, but a battle cry against the First Amendment and the great American experiment of freedom and tolerance of difference.

Irony abounds here.  One of my own ancestors came over on the Mayflower, as a matter of fact.  The Puritans wanted freedom to practice their religion, not anybody else's, just their own, including a prohibition against Christmas, which they outlawed in 1659.  They knew their religious history, that the holiday originated as a pagan festival, full of excess of every sort, with the thinnest wash of Christian appropriation added later to assure pagans they could still celebrate the Winter Solstice after they got baptized.

The Puritans had mellowed by 1712, when Cotton Mather, whose credentials are as Christian as you get, preached tolerance for other Christians who did want to celebrate the baby's birthday.  I do not now dispute whether People do well to Observe such an Uninstituted Festival at all, or no, he said.

He went on to encourage a Romans 14 attitude: Good Men may love one another, and may treat one another with a most Candid Charity, while he that Regardeth a Day, Regardeth it unto the Lord, and he that Regardeth not the Day, also shows his Regard unto the Lord, in his not Regarding of it...

According to Cotton Mather, he believed in "political correctness", because he found it in the Bible, in Paul. 

The Brain And Christmas, Or At Least Something, Anything

Christian, Jew, Zoroastrian, Wiccan, Druid, "spiritual but not religious," and plain old capitalists, as the days get shorter, our pineal glands go into overdrive, pumping out all that melatonin that makes us want to hibernate.  Our brains cry out for relief.  Push back the darkness!  Light a candle!  Light a bonfire!  Wait a minute -- just a log.  Nothing in the brain requires that anybody get burned at the stake.

Regular readers know that, while Prozac Monologues is not for the purposes of evangelism, I make no secret of my Christian faith, and even defend religion and the disciplines of church membership as resources for mental health.

But not any religion.  Not what passes for Christianity but looks suspiciously like, well -- fascism.  There, I have said the word.  When the cross gets wrapped in the flag, no matter whose flag, you know that the frontal cortex is offline, the lizard brain is in charge, and somebody is about to get crucified.

Which is so not what Jesus would want for his birthday present.

I mean, the first guests invited by heaven to his party were the scruffiest low lifes of the neighborhood, who had probably been passing the bottle to keep warm that night, and some foreign fire-worshipers, for crying out loud!

Theology Alert

He came as a baby.  He came vulnerable.  He came helpless.  In the core and mystery of what Christians call Incarnation, God-in-flesh, that very vulnerability is how God tells us how much God loves us, that the great Almighty would set almighty aside in order to pitch his tent among us.

That God desires to be with us, and will pay whatever price that requires, and would indeed require, is the core of the Gospel, all we need to know that we are beloved.  We are worthy.  Knowing that, then we can exercise the courage it takes to treat others as beloved and worthy.

We can even say, to show our rejoicing for the worth that God gives us and our rejoicing for the worth that God gives our neighbors, Happy Holidays!

These days are holy, they are graced by God's presence among us, whatever days you keep.  That is what I believe.  And I hope for you that these days are happy.

Research on Vulnerability

So here is where the deep truth about God-With-Us and mental health research come together: Brene Brown, research professor at the University of Houston Graduate College of Social Work on The Power of Vulnerability.




That baby who slept in the cold and all the babies who tonight sleep in the cold call us to look deep, deep into our hearts, the hearts of our neighbors, the heart of the world, the heart of God.

Happy holidays.

painting of Announcement to Shepherds by Gaddi Taddeo, c. 1327, in public domain

mezzotint portrait of Cotton Mather by Peter Pelham, 1700, in public domain

photo of Luminaria at Lake Washington from Seattle Municipal Archives, used under the Creative Commons license

painting of Madonna and Child with Cherries by Jan Gossaert, c. 1520, in public domain

The Therapeutic Alliance - Or Not

My therapist asked, Does writing your blog help you overcome your trust issues with psychiatry?

Hah!  So she doesn't read my blog.

Not that I think she should.  Of all the many things about which I have strong opinions, whether care providers should google their patients is not one of them.  They can have that discussion among themselves.

Trust My Psychiatrist?

But her question started me thinking.  I trust my own psychiatrist.  How did that happen?  I tucked that question away for a future blog.

Then last September David Mintz wrote about Psychodynamic Psychopharmacology.  Psychodynamic psychopharmacology explicitly acknowledges and addresses the central role of meaning and interpersonal factors in pharmacological treatment.

One particular paragraph brought my therapist's question and my tucked away post back to mind:

The Prescriber and the Placebo Effect

An analysis of the data from a large, NIMH-funded, multicenter, placebo-controlled trial of the treatment of depression found a provocative treater x medication effect. While the most effective prescribers who provided active drug (antidepressant) had the best results, it was also true that the most effective one-third of prescribers had better outcomes with placebos than the least effective one-third of prescribers had with active drug. This suggests that how the doctor prescribes is actually more important than what the doctor prescribes!

Turned to the patient's perspective, if your meds don't work, maybe you don't need different meds.  Maybe you need a different doctor. 

That is not where David Mintz, MD went with this finding.  He cites research indicating that a strong therapeutic alliance is one of the most potent ingredients of treatment.  Well, an alliance has two partners.  But his article focused on just one side of the alliance, on patients, how our personal psychodynamics might interfere with treatment, (with a passing reference to countertransference in relation to overprescribing).  He pretty much ignored, as in, totally ignored the nature of the alliance.

Today I ask the question the way the patient would ask the question:

What helps me trust my doctor?

I didn't trust my first two psychiatrists.  I had very specific reasons.  When I told one of them that a particular behavior on her part had decreased my trust in her and damaged our relationship, she said, I don't do relationships.  I use pharmacology to treat psychological disease.

Well, I knew where I stood.

But I do trust my current psychiatrist.

I walked into her office predisposed not to trust.  Yes, I did.  I had so little expectation of being heard that I had laryngitis, literally.  Some of that distrust came from my own long-term issues, the psychodynamics of a trauma history.  I will own that.

Part of it came from my work on this blog, reading research articles, discovering the shoddy nature of some research design and unethical practices in publication, coming across the language that generated my OMGThat'sWhatTheySaid feature, disrespectful language, and reading case after case after case of unethical sales practices in the pharmaceutical industry, resulting in lawsuits and fines (not to mention neglectful prescribing practices and consequent harm to patients).

Part of it came from my experiences with those other two psychiatrists.

Mintz would put all this under the category negative transference.  Me, I would put some of it under the category of psychiatrists' behavior.

I can identify specific behaviors on the part of my current psychiatrist that helped me overcome this distrust.

Doctors Apologize?

The very first thing -- she apologized.  It was an institutional screw-up, not hers, that had me sitting in the waiting room for thirty minutes before our first appointment, not filling out paper work, not answering questions, just sitting, no explanation, silence.  But on behalf of the institution, she apologized.

Wow.  Like it mattered, the anxieties I went through during that half hour.  Like I had the right to be treated better.  Like I could expect that in this relationship, and there would be a relationship this time, I would be respected.

Ellen Frank wrote in Treating Bipolar Disorder, ...perhaps because many patients with bipolar disorder have had the great personal or familial success that often accompanies the energy and enthusiasms of bipolar disorder, a subset of patients with bipolar I disorder present with an entitled stance that is rarely seen in other outpatient populations [such as self-effacing unipolar] ... your IPSRT patients will sometimes expect that... you are never late for an appointment, that you never change or cancel...  sometimes there is nothing that can be done other than to apologize for this "affront."

That "affront," in quotes, confused me.  The notion that expectations about being on time come from a sense of entitlement confused me.  Oops -- that the doctor would be on time.  Me, when I am late or I cancel, I apologize, because I respect the doctor.  My new psychiatrist canceled once, is late occasionally.  Each time she apologizes.  I don't think she thinks I have a sense of entitlement.  I think she respects me.

Maybe Frank ought rather to be concerned about her self-effacing unipolar patients.  Maybe part of their depression is the habit of internalizing the disrespect of authority figures.

Respect As The Ground For A Therapeutic Relationship

Last October, John McManamy published a Mental Health Patients' Bill of Rights.  They included:

• The Right to a psychiatrist who listens
• The Right to a psychiatrist who values us as human beings
• The Right to a psychiatrist who values our uniqueness as human beings
• The Right to a psychiatrist who is committed to getting us well, not just stable.

I think "The Right to a psychiatrist who respects us" is the overarching category.  John's list includes actions and attitudes that proceed from respect.

If my doctor respects me, I can expect certain things to follow.  I can expect that the doctor has my interests at heart when handing me a prescription.  I can expect that the doctor will listen to, care about and remember my concerns, my values, my life outside the office, and the effect of treatment on that life.  I can expect that the doctor pays attention to the results of a particular treatment on me, specifically me.

These issues are important, because the treatments are powerful.  Whether or not they help, they sure can harm.  If my doctor respects me, I can believe that she will pay attention to the harm.

Then I can feel safe(r).  Then we can have a therapeutic alliance.

Next week -- more specific behaviors that demonstrate respect and build a therapeutic alliance.

flair from Facebook

Mental Health Day -- The Funner Version of Advocacy

Last week it was Mental Illness Awareness Week, according to NAMI.  So today it's World Mental Health Day, according to WHO.  The World Health Organization, that's WHO.

That's a week for mental illness, a day for mental health.  Whoever organizes these things must be reading my mood chart.

I cycle within cycles.  In the larger circle, I have been able to maintain a stable state for a while now -- the state of jaded, that is.  So I take up this week where I left off last week, continuing the repost of a series on the sorry state of mental health advocacy.  This second post takes a glass-half-full approach.

Not exactly mental health, but at least the upside of mentally interesting.  I mean, we got these diseases for life.  We might as well learn to make them work for us.

Mental Illness Awareness Week - Because We Are Really Good at Delusional

Imagine this -- Somebody from NAMI attends one of those campaign events and gets to the microphone.  Intending to ask about the candidate's views on funding for community mental health, this poor parent begins with a statement: 

People with severe mental illness die on average twenty-five years before everybody else.  They have the expected lifespan of Somalia. 

Nowadays the crowd will cheer.  But that particular youtube wouldn't go viral.

I am jaded about this Mental Illness Awareness thing.  It will not be subjected to any Best Practices evaluation.  NAMI and the pharmaceutical industry have been making us more aware of mental illness for decades now.  The numbers on prejudice have not budged.  They have not budged.

That negativity -- does it mean I am currently displaying symptoms or that I have done my research?  Both, actually.

I'll cop to the irony here.  I myself was a speaker at one of those Mental Illness Awareness Week events once, held on a Sunday night in a not-much-traveled portion of a university campus.

It was very moving, the candles and all that.  And it did raise awareness, in the sense that it made those of us who were there, people with mental illness and those who love us aware that we are not alone.  But did it increase funding for research and treatment?  Did it reduce prejudice?  I don't think so.

Let me answer that another way.  Did it increase funding for research and treatment?  Did it reduce prejudice?

Nope.

So symptoms, research, irony and all, my contribution to Mental Illness Awareness Week is a repost of what I think we ought to be doing this week.  And next.  And next. 

From Friday, March 11, 2011:

Ignore/Laugh/Fight/ -- Mental Health Advocacy That Wins

If they don't want to employ you, if they are afraid of you, if there are four times as many of you in jail as in the hospital, then it's not just stigma.  It is prejudice and it is oppression.

The twentieth century offered a whole degree program in prejudice and oppression.  Others have made progress against what beat them down.  Though we are now stalled and falling behind, we can move forward when we adopt their methods.

The Map to Liberation

Mahatma Gandhi was not the first freedom fighter.  But he is the great theoretician.  He gave us the map.

First they ignore you.
Then they laugh at you.
Then they fight you. 
Then you win. 

Four simple steps.  The good news -- we have already taken the first.  Got that one down pat.

Liberation 101: 

We are in charge of the map.  The oppressor doesn't decide that oppression will end.  It endures until the oppressed decide that it will end.

What we have to do is provoke the next step.

Then they laugh at you.

Well, that's where we are stuck, because we are unwilling to be laughed at.  Last month's NAMI meeting was about Iowa's upcoming budget cuts.  Somebody said, When we complain, they say we are crazy.  I think she is a therapist.  She has that therapist look, if you know what I mean.

Therapists say the funniest things.  When we complain about how we are treated, they say we are crazy.

But we are crazy!  We start off ahead of all the other liberation movements that had to get crazy to take it to Gandhi's next step.

Think Martin Luther King.  Think Nelson Mandela.  Freedom?  People called them communists.  Either that or just plain nuts. 

Like these other movements, we have to find a spiritual taproot deep enough that we can endure being laughed at.  Just like the tree, standing by the water... 

The spiritual work will be impossible if we expect our care providers to lead.  They get twitchy if we talk spirituality.  I will address that work another time.  Right now I will sketch out how we break beyond First they ignore you, and move to Then they laugh at you.

What that means more precisely is, we have to do things to make people think we are nuts.  Like, DEMAND that we receive funding for research and treatment, DEMAND that we have the same access to health care as anybody else, DEMAND that we receive our health care in health care facilities, not in jails.

It's all about budget cuts right now.  Corporate tax cuts -- that's a given.  Corporations spent good money for our current crop of legislators, and they expect a return on investment.

So who will pay for these tax cuts, the people with mental retardation or the people with mental illness?  The Iowa State legislature has a committee that has asked us to decide.  Well, isn't that special.

We have to DEMAND that they change the rules of this game.  We have to REFUSE to play Survivor.  We have to refuse LOUDLY.

How?  African Americans sat down.  That is when they moved off Step One, when they REFUSED to be ignored any more.

So how about we lie down?


Lie In/Die In

Picture this.  The next Loonie Lobby Day at the state legislature, we don't get all showered and neatly normaled up and go have sincere conversations with our legislators who are really sympathetic (their brother has depression, so they know what we are up against, but their hands are tied by that pesky deficit...)

Instead, we stand in the rotunda and read off the names of their constituents who have committed suicide.  Each time a name is read, somebody falls down.  They have to step over our bodies to get out of the building.

Mental Health "Parity"
 
The Mental Health Parity and Addiction Equity Act would be better called the Swiss Cheese Mental Health Act.

1) Only large employers are affected.

2) If they can demonstrate it causes them financial hardship, they can get an exemption.

3) Parity is a laugh anyhow, if reimbursement rates are so low you can't find a provider who accepts your insurance.

4) The provisions of even this piss poor legislation that address reimbursement rates are now the top of the list on Congress's chopping block.

So off we head to Washington.  There are 13,000,000 million of us with serious mental illnesses in the US, including 5.7 million with bipolar, 2.4 million with schizophrenia and 7.7 million with PTSD.  The numbers add up to more than 13,000,000, because some of us get to double dip.  Piece of cake to pull together 34,000 to do a die-in around the steps of Congress, representing one year's worth of the deaths by suicide in the US.  We will drape American flags over the bodies of the vets.

Yes, we are dying out here.  Let them step over us.

How nuts are we to think we can turn around this systemic discrimination?  In this political climate?

Progress Report

Remember, When we complain about how we are treated, they say we are crazy?  By now some of my readers seriously want me to reconsider Seroquel.  Others -- if you are still reading, your doc wants you to up your dose.  This means we are making progress.

At some point, laughter becomes a cover for scared.  Then it's time for the next step.

Then they fight you.

Remember, this is our map.  We are the ones who push it forward.  Nobody else will.  And if I am scaring you, look at it this way.  If we aren't scared already, we'd have to be crazy.

Until we change our advocacy, we will continue to lose psychiatrists.  We currently have less than half the psychiatrists we need to provide a even a shoddy level of token med checks.  In Iowa, we have one fourth.  While demand is going up (think Iraq, think Afghanistan), supply is going down, as retiring psychiatrists are not replaced by new doctors.  Why go that far in debt to get through med school and then choose a specialty with the lowest pay scale on the block?

Until we change our advocacy, we will continue to lose community mental health centers.  Remember community mental health centers?  The places we were supposed to go when they kicked us out of the hospital?  They are disappearing already.  Here are the Kansas numbers.  You can find the same story for any state you google.

Until we change our advocacy, we will lose what parity was promised.  Again, all employers have to do to avoid it is demonstrate that it costs them money to provide it.

Until we change our advocacy, we will lose even the programs that jails now provide.  Why should criminals be coddled?

Desperate Times Call For Futile Gestures

What were we thinking?  That public demonstrations would make a difference to cold hard facts?  Were we nuts?  (By the way, what have we been thinking, that talking would make a difference?)

After the strategies designed for Then they laugh at you prove futile, we up the ante.  In place of our bodies, we substitute urns full of ashes and dump them on the floor of the assembly halls.

In 1987 AIDS activists entered the New York Stock Exchange.  Seven people unobtrusively chained themselves and a banner to the rail overlooking the trading floor.  At the opening bell they unfurled their banner and blew fog horns.  They drowned out the opening bell, and prevented traders from trading, while they brought national attention to their demand that pharmaceutical companies stop profiteering at the cost of their lives.

Wall Street is our audience, too -- all the businesses that insure some of their employees but not us, all the health care companies that pay reasonable reimbursement to some doctors but not ours.  How about we bring ambulance sirens? 

A Day Without Mental Health Care 

Next we head to Main Street.

The 2004 film A Day Without A Mexican imagined what would happen if one day everybody in the US from Mexico, Guatemala, Honduras, Nicaragua, et al disappeared.  Economic havoc, that's what.  A few years later, the movie inspired a political demonstration.  Workers stayed home for a day.  In some places, restaurants simply closed for the day, unable to serve their customers.

So last week the Wall Street Journal reported a survey by Workplace Options.  The survey discovered that 41% of workers polled had taken 4-9 days off work in the previous year to care for their own, their friends', their coworkers' or family members' mental health issue.  Half work in offices with no benefits, support or services to deal with mental health issues.

They think they can't afford to provide services?  They haven't a clue how much it already costs them not to. 

There you have it, a National Day Without Mental Health Care.  Everybody who has a mental illness or loves somebody who does -- stay home.  I'm thinking Monday -- to make that moon connection, and maybe even disrupt Monday Night Football?

Going To Jail

At this point, we are littering, destroying property and generally disturbing the peace.  We are going to jail.

Everybody on a three-month wait list for an intake interview,

Everybody on a two-year wait list for the judicial review of an SSDI application,

Everybody on a four-year wait list for sheltered housing,

Everybody who had been doing okay, but stopped taking meds when the day program closed,

Everybody who can't afford the copay for that third tier prescription anyway,

Everybody who doesn't have health insurance at all,

Everybody who is homeless,

Go downtown and set a trash can on fire.

We Need Some Coordination Here

No, not everybody.  Jail is not a good place for people with OCD, PTSD, nor Borderline.  You all, your part is to run right down to the courthouse, legal brief in hand, to make sure the police department fulfills its obligation to get the rest of us our meds.

Prejudice And Oppression -- Some Observations

This post has been about fighting oppression, the institutional arrangements that support an unjust system.  Oppression is weighty.  It is fierce.  It does not respond to reason.  Power yields only to power.  The strategies and actions I have described are the power of anger that has been organized.

Our families and our care providers are just as scared as everybody else of our anger.  So they will not help us here.  They want to address prejudice, not oppression. 

Prejudice is the irrational thoughts and feelings of individuals.  Well, prejudice also needs to be addressed.  There is work enough for everybody.  Think of differential diagnoses as differential skill sets for the differential tasks of freedom-fighting.

That's coming next week...

banner from nami.org

image of prison bars from microsoft

photo of Mahatma Gandhi in public domain 

flair from facebook

forest photo by Maylene Thyssen used under the GNU Free Documentation license

sit in at Walgreen's in Nashville, Tennesee, March 25, 1960, in public domain

photo of die in casualties by Brendan Themes and used under the Creative Commons Attribution 2.0 Generic license

fist graphic in public domain

Dopamine and Dementors

Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life.

-- Remus Lupin to Harry Potter

Harry Potter and the Prisoner of Azkaban

Been there?

While we wait with bated breath for the final episode of the Harry Potter movie series, here is a post on the neuroscience of Harry's worst nightmare.

Dementors, you see, are dopamine depleters.  They are not to be messed with.

Neither is any other kind of dopamine depletion.  Here is one clinical case, an experiment conducted on one highly-functional, never-a-whiff-of-mental-disturbance 21-year-old who received a dopamine depleting drug over the course of 25 hours.

The Future is Bright -- For Whom?

The Future is Bright for Psychopharmocology Breakthroughs --

Okay, I'll bite.

I subscribe to an online journal Psychiatric Times.  Or at least, I have access to the articles for which there is no charge.  I don't get paid for this, you know.  Anyway, I get emails that link to the articles of the week.

So that was the subject line on the email dated 4/21/11, The Future is Bright for Psychopharmocology Breakthroughs.

This I'd like to know about.

Inside the email was a link to Novel Treatment Avenues for Bipolar Depression: Going Beyond Lithium, by Roger S. McIntyre and Danielle S. Cha.

This I'd really like to know about.

The article was not what I had been led to believe.  But I learned a lot, will share some of that with you, and explore the miscommunication at the end. 

It's Not Stigma -- It's Prejudice and Internalized Oppression

Stigma sticks to the persons stigmatized.  And sure enough, we are stuck.  Every time we repeat the word, we reinforce it.

Here is an idea.  It's not stigma.  It is prejudice and internalized oppression.

We gotta do something new, people.  We're dying out here.

Treatment For Mental Illness -- The Streets Or Jail

Ever since John Kennedy promised us more humane, community-based treatment for mental illness, we have been living on the streets.  Somebody with serious mental illness is four times more likely to be homeless than somebody without.

Or in jail.  On any given day, there are roughly 283,000 persons with severe mental illnesses incarcerated in federal and state jails and prisons.  In contrast, there are approximately 70,000 persons with severe mental illnesses in public psychiatric hospitals, and 30 percent of them are forensic patients.  Los Angeles and Cook County jails are the largest inpatient mental health facilities in the country.

No Respect=No Money=No Help

Does anybody out there live in a state where funding for mental health services is not being slashed?  Wasn't being slashed even before the last elections?

Now that we are talking money, how is this for a reality check on what we are worth -- from John McManamy's blog Knowledge Is Necessity:

In 2009, the NIH allocated $3.19 billion for HIV/AIDS research.  By contrast, research for depression (including bipolar) was a mere $402 million.

Million, not billion.  These are ratios that have held fairly steady over the years.  Approximately 1.5 million individuals in the US are affected by HIV or AIDS.  About 19 million in the US in any given year deal with depression or bipolar.  That translates to the NIH spending $2,013 per patient for HIV/AIDS research vs a paltry $21 per patient for depression and bipolar.  Putting it another way, for every dollar the NIH invests in an HIV/AIDS patient, depression and bipolar patients get one penny. [emphasis added]

Kinda puts things in perspective.

Funding By Death

But AIDS is fatal.  What about spending per death?

The number of deaths of persons with an AIDS diagnosis has stabilized in recent years at around 17-18,000 per year.  (Deaths of persons with an AIDS diagnosis may be due to any cause).  Since the beginning of the epidemic, an estimated 597,499 people with AIDS have died in the U.S.  Again, that does not mean they died of AIDS.  The figure includes heart attacks, cancer, accidents, suicide, etc.

In contrast, the Center for Disease Control reports that 34,598 people died by suicide in 2007.  We are pushing 900,000 deaths by suicide in the same period as the 600,000 people with AIDS who died for whatever reason.

But people with AIDS are now living longer.  Today, for every death of a person who has AIDS, two people die by suicide.  Far from stabilizing, the suicide rate has been rising since 1995.  [Side note: so much for that claim that increased antidepressant use caused the rate to go down.  There are more of us on them now than ever, and more of us dying anyhow.]

Depression is not the cause of suicide in all cases.  Research indicates that 90% of those who die by suicide have a mental illness.  That 70% have a mood disorder is a low ball estimate.  But that would yield 24,218 deaths by suicide among persons with mood disorders.

So the NIH spends $for 187,647/year for every death of a person with AIDS and $16,599/year for every death of a person with a mood disorder.

Oh, it's not so bad after all.  If we look at death rates, the disparity is down to $11 for somebody who has AIDS and dies by any cause to $1 for somebody who dies from depression.


Feelin' all warm and gooey inside now. 

No Political Price To Pay

Here is the politics at work.

The Ryan White Act was enacted in 1990 and named after a twelve-year-old who was kicked out of school because he had HIV/AIDS.  The act provides funding of last resort for poor people with HIV/AIDS and technical assistance to state and local organizations dealing with HIV/AIDS.  This is on top of the NIH research funding.

The money is not much, just over $2,000,000.  But it has held its own in the last decade, with modest increases every year until 2010.  Up for expiration in 2009, it was renewed by unanimous vote in the Senate and 408 aye/9 nay/15 abstaining in the House.

Now I am totally in favor of the Ryan White Act and the amount is stingy.  But I ask you to consider, do people with mental illness have anything like the Ryan White Act?  And can you imagine a legislator who thinks there will be any political price to pay for the cuts he/she is voting right now to services for people with mental illness, or for teaching laws enforcement how to handle mental health emergencies?

We could run the numbers for other diseases.  Breast cancer would reveal similar results.  Please, please understand me.  We are not on different sides here.  The AIDS example is especially valuable because we can draw lessons from what AIDS activists have accomplished. 

Stigma Busting Is A Bust

The problem is that people don't think of mental illness as real illness, right?  The solution is more education about the biological basis for mental illness, right?

No, not so much.  Researchers at Indiana University and Columbia University examined changes in understanding and attitudes in the US between 1996 and 2006.  Education has indeed increased understanding that mental illness is a biological condition.  54% of people knew that about depression in 1996, 67% in 2006.  Let's give the pharmaceutical companies some credit for their share, probably the lion's share of that change.

On the other hand, do they want to work with, socialize with, marry or live next door to us?  Nope.  Those numbers did not budge in the same time frame.  More telling for the task of designing stigma-busting strategies, there is no difference in attitudes between those who know that mental illness is biological, and those who do not.

In fact, those who understand the neurobiological basis for depression are more likely than those who do not to think that we pose a danger to them.

I'll kill 'em.  I swear, I'll kill 'em.  Just as soon as I can get out of bed.

What we are doing against stigma -- it's not working, folks.

How come?

Evidence-Based Stigma Busting

A study from the University of Kent in Cambridge, UK uncovered one flaw in typical stigma-busting efforts.  To bottom line it, how the listener responds depends on who the speaker is.

When allies (such as doctors or family members) make positive statements about people with mental illness, they are less credible than when people who have a mental illness speak for ourselves.  They is a word that doesn't cut it in stigma-busting, regardless of intention or attempt at sensitivity.  The authors cite previous research regarding other stigmatized groups showing that positive statements about them can be perceived as patronizing. 

This Is Good News

1. We were never worth much and now are worth less.

No, I mean it.  This is good news.  As my therapist used to say, The facts are friendly.  These are the facts, and they will be our ammunition.

2. We can do better.  In fact, the bar is set pretty low.

3. We have others, even among us, who have fought prior battles and can point the way.

Next week we take advocacy to the next level.


 

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Health Policy of Sleep

Pharma/Research/Medicine Industrial Complex

A psychiatrist friend directed me to PharmedOut.org, a  source for all things seedy in medical research, medical education, and the sale of pharmaceuticals.  I don't need to repeat what you already know about ghost writing research articles, how pharma gets around restrictions on bribes by paying doctors to "teach," the sample scam, etc.  I am not spending time this week on what I didn't know until now about the editorial/advertising relationship in medical journals, or that the drug companies are the major subscribers to these journals and give them to doctors, and are the major purchaser of reprints (at inflated prices) to be distributed by drug reps to doctors.  But it is more of the same.  Just thought I'd mention it.

We go round and round about this.  Still, every research article ends with a cry for more funding, which will come from just one source.  Every doctor gets everything he/she knows about medications ultimately from just one source.  Every friend and family member who wants to help repeats the message taught by one source -- Keep trying.  Translation: keep buying drugs.

Addicted To Big Pharma

The Insomnia Cure for Postpartum Depression -- AKA Stupid Science Reporting

My niece just gave birth to twins, and friends are bringing home their newborn.  So this report on sleep deprivation is personal.

Last year's Best of Stupid Science Reporting comes from (drumroll, please...) the New York Times: In Sleepless Nights, a Hope for Treating Depression by Terry Sejnowski.

Don't Believe Everything You Read In The New York Times

Evidently, 75 published papers with over 1700 subjects in the last forty years have documented that the depressive symptoms of new mothers are relieved after a sleepless night.  Now let's remember the number one rule of research publishing -- for all we know, the same study may have been published 75 times.

On the other hand, if the author didn't double count studies, that would be an average of 23 participants per study.  Whatever the results, with those numbers, they would not be robust results.  A review of literature cited below examined some of these studies.  One had nine participants.  One had three.  These are not studies.  They are anecdotes.

Sleep Deprivation And Euphoria

Moving on.  Anybody with bipolar disorder or for that matter, any student who has pulled an all-nighter can tell you that sleep deprivation lifts mood.  After we talked until 5 AM my freshman year, the most natural thing to do in the world was to go invade a nearby garden and pick somebody's blackberries. 

Sleep deprivation used as a treatment for depression is efficacious and robust: it works quickly, is relatively easy to administer, inexpensive, relatively safe and it also alleviates other types of clinical depression, Sejnowski reported.

Unfortunately, There Is This Little Problem

But before you throw away your pills, read the but.

Continuing from the article -- First, sleep deprivation is not as convenient as taking a pill.  Actually that's debatable.  No doctor's appointment, no worries about in or out of network, no copay, no trip to the pharmacy, no need to check the formulary...  If that were the only downside, it would have much to commend it.

Second, prolonged sleep deprivation is not exactly a desirable state; it leads to cognitive defects, such as reduced working memory and impaired decision making.  Translation: NOT relatively safe.  I remember when my son was three months old and I had just gone back to work.  I stopped at the stop sign, looked both ways, and then pulled out in front of oncoming traffic.

Finally, depression recurs after the mother, inevitably, succumbs to sleep, even for a short nap.

Oops.

Wait a minute -- this is the New York Times here.  Read that again.

Sleep deprivation is wonderful cure for depression.  It's quick, cheap and safe.  That's the good news.

The bad news?  A relapse rate of 100% after 15 minutes.

Yes, that would be a difficulty.

There are a few other difficulties with this stupid science report, as well.

Actually, Sleep Deprivation Is Linked To Postpartum Depression

Lori Ross, et al did a review of the literature on this subject.  Against Sejnowski's 75 studies are piles and piles of studies that assert quite the opposite, that sleep deprivation is a significant risk factor for postpartum depression, almost every woman who has postpartum depression is sleep-deprived, and improving mothers' sleep improves their mood.

Sleep Deprivation And Psychosis

The most serious risk of postpartum sleep deprivation would be psychosis.  Studies back over a hundred years, noting that the almost universal early symptom of puerperal [first six weeks after childbirth] cases is loss of sleep (R. Jones, Puerperal Insanity from the British Medical Journal, 1902).

One or two women out of a thousand experience psychosis after giving birth, putting them at risk for suicide and infanticide.  Depending on the study, 42-100% of women with postpartum psychosis also experience insomnia.  Now that is a robust finding.  Furthermore, there is evidence that sleep loss is the last straw that tips women into development of continued bipolar disorder.

Mood is a continuum item.  Depression would be on one end.  Lifting of depression moves in the other direction.  Then comes euphoria, then mania, then psychosis.

Sleep Deprivation And Mania

And speaking of mania, the experience of people with bipolar and college students is well supported in the literature, that sleeplessness can trigger mania.

Sleep For Prevention Of Postpartum Depression

All this stuff is so well known, the Women's Health Concerns Clinic at St. Joseph's Healthcare has developed a preventive intervention that is routinely offered to patients who present with high risk for postpartum depression. Can you imagine a five-day stay in a private room after childbirth?  These and other strategies aimed at improving the sleep of new moms decreased mood disorders and even psychiatric hospitalizations months after childbirth.

Sleep.  That is the REAL cure for postpartum depression.  Forget baby showers.  The kindest gift you can give a new mom is to take care of the kid while mom takes a nap.

Speaking of which,

Aimee -- get off the computer and go to bed!

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Weighing Costs and Benefits Part V -- Down and Dirty Algorithm

SE + NE + $$$ + STG + TR = STC.

E#PT X NSR = STB.

STB TO STC = ODDS OF SUCCESS

There it is, the Prozac Monologues Down And Dirty Algorithm, to weigh your costs and benefits for medication or any other treatment for any mental illness, or any other medical condition, for that matter.  Click on the first and second lines.  They will take you to the posts that develop the formula.

Can you believe we finally made it?

We started with the:

Manifesto of a Lab Rat. 

I am a Lab Rat.  Yes, I am.

The Manifesto begins there.


It continues: 
 
If I am a lab rat, I will be a free-range lab rat.

What I mean by free-range lab rat is this: 

I insist that I contribute more to this enterprise than my body.

Your doctor tells you to weigh your costs and benefits, but gives you no way to do so, other than insufficient information + gut + desperation = noncompliance, if you don't come up with the same answer as your doctor.

What we need is an algorithm: logical rules that we can apply to objective data to solve a problem.

This algorithm does not exist.

So as an interested party, a very interested party, given that my body is the test tube, I decided that my contribution to this chemistry experiment would be the algorithm.

The problem we want to solve is this:

Do I Want To Put These Chemicals Inside My Body?

This task has continued over several posts this fall, interspersed with a few sick leaves and vacation days.  Click on costs and benefits to follow the whole development.  (The first post is at the bottom, dated August 19, 2010).

What To Do With The Algorithm

The resulting algorithm can be applied not only to the chemicals you put in your body, but any other form of treatment as well, talk therapy, aerobic exercise, yoga, Chinese medicine, acupuncture, even aroma therapy, should you choose.

You can compare the results of the cost/benefit analysis of different treatments, and do the same with various combinations, when you can find the numbers.  Which admittedly, you cannot for any of these that do not get Blue Cross Blue Shield reimbursement.

There are numbers out there for talk therapy and aerobic exercise.  But doctors do not usually use the word therapy for anything other than chemicals or electro-convulsive therapy (ECT) or any of those new-fangled electrical interventions.  That is the context in which you are told to weigh your costs and benefits.

For the most part, I have used antidepressants as examples.  One out of every ten people in the United States is taking them right now.  So this would be the most common application, among psychotropic medications.

It was helpful to look at chemicals as I developed this algorithm, because they are the form of treatment with the greatest costs and greatest variety of costs:

dizziness and confusion,





insomnia and fatigue,

weight gain, irritability, sexual dysfunction,  irritability.




So this is what you do when you use the algorithm to weigh your costs and benefits -- you compare two numbers, STC (Short Term Costs) and STB (Short Term Benefits).

And how do we get those numbers?

Remember,

SE + NE + $$$ + STG + TR = STC.
E#PT X NSR = STB.

The abbreviations increase the confusion quotient, and thus make it look scientific.  Here is a translation:

Side Effects (SE) plus Not Effective (NE) plus Money ($$$) plus Stigma (STG) plus [lack of] Trust (TR) are your costs (STC).  These costs are based on the reasons people give for discontinuing their medication.

Efficacy Given The Number of Present Trial (E#PT) times How Many Would Not Experience Spontaneous Remission Unless They Took the Medication (NSR) are your benefits (STB).

Did you like my illustrated tour of the previous posts?

And Where Are We Supposed To Get Our Data?

They ought to be provided to you by your doctor, who has told you to weigh your costs and benefits.  Except for money, stigma and trust -- you have to come up with your own odds that you will quit taking your medication because you can't afford it, you are afraid for your reputation, or you do not trust your doctor.

They ought to be provided to your doctor by the drug reps.

But they are not.

So you have to do your own research.

I think the algorithm would make a fabulous app.  The numbers could be regularly updated, from the latest research by scientists not funded by the companies that sell these chemicals.

I claim copyright, by the way. 

Long Term Costs And Benefits Are Missing

Notice that I refer to short term costs and benefits.  Some will object that I left out good reasons to take meds: the difference that meds make to how quickly another episode occurs (relapse rate), how long various approaches take to work (time to remission), how medications affect things like brain mass, suicide risk.

Others will object that I left out good reasons not to take them: the possibility that medication might accelerate the natural progression of the disease, the possibility that the diagnosis is off and you will flip into mania or hypomania, liver damage, the consequences of weight gain, such as heart disease and diabetes, suicide risk.

Someday I will do a post or two on that suicide risk issue.  There is a lot to say about that.

Well, this algorithm is complicated enough and took five posts already.  This one has that i-Pod potential.  The one that includes all those other issues will take more gigabytes.

STC versus STB give you the odds.

Once more I repeat, they do not give you your decision.  There are additional personal factors that influence or even override logical rules, objective data, and problem solving.

Personal Factors:

You have used up your sick leave, your vacation time and your family leave for this year and next, and your boss will fire you if you don't start taking meds.

Your wife has issued a similar ultimatum.

You can't get out of the loony bin any other way.

You are desperate.

You have the knife to the wrist.

Like I said, it is your decision.  I am merely your humble servant.  Who does occasionally buy a Powerball ticket.

How Does The Algorithm Work?

Let me give you a personal example.

When I first took Prozac, Eli Lilly's website said that it had helped 70% of the 55,000,000 who had already taken it.  I didn't know anything about spontaneous remission or the effect of which trial this was.  So STB = 70.

Meanwhile, none of the side effects (SE) reported went above the 15% range; the odds that it would not be effective (NE) were 30 out of 100; it was already generic, and I could afford it ($$$); stigma (STG) was not an issue for me; and I had total trust (TR) in my doctor.  So STC was 15 + 30 + 0 + 0 + 0 = 45.

That meant (with the information I had) that the odds for Prozac were 70 to 45 in favor.  And I could put off therapy.  No brainer.

Next up -- actually, five keep trying's later, we had moved on to a psychiatrist who prescribed Effexor.  Crazy Meds says: for deep, despairing clinical depression that needs to respond to the standard tweaking of the three most popular neurotransmitters, Effexor XR (venlafaxine hydrochloride) often pulls people out of the abyss.  By then, the deep, despairing abyss -- that would be me.

My doc said I get good results from Effexor.  She didn't say how good results translated to a number,.  (That's case studies, by the way -- not research.)  But she did tell me to weigh my costs and benefits.  By then I knew that most antidepressants have about the same effectiveness level, which I took to be around 40%.  I didn't know it mattered that I was on my sixth go round.  Odds for benefit, STB = 40%

She also gave me the usual side effects, because I asked.  Since insomnia was a major issue for me, and we had run through a number of sleep aids, she said that the insomnia risk (SE) was 15%.  Not effective odds (NE) would come in at 60 out of 100.  Since she didn't ever answer phone calls, and I knew I couldn't stop this med without help tapering off, and I was wary of her by now, I grilled her on how to discontinue without her help.  Trust, lack thereof, (TR) was in the 40% range.  STC was 15 + 60 + 40 = 115.

With Effexor, my odds were 115 to 40 against.  Not so good this time.  However, desperation overcame gut instinct.  So I kept trying.

The rules of the algorithm work, but the results are only as good as the objective data.  What if I knew then what I know now?  Without going into the whole story, and by tweaking numbers actually available: 

Prozac -- 

STB = 40 (E#PT) X .8 (NSR) = 32.
STC = 30 (SE) + 60 (NE) + 0 ($$$) + 0 (STG) + 20 (TR) = 110. 

110 to 32 against.  I still had issues with therapy (nothing to do with any therapist I have ever known, by the way).  And being over-educated, I am on the compliant side.  So I would have given it a shot. 

Effexor --

STB = 10 (E#PT) X .8 = 8.
STC = 34 (SE) + 92 (NE) + 0 ($$$) + 0 (STG) + 95 (TR) = 221.

221 to 8 against.

The numbers for Effexor come from the STAR*D study, and were available at the time I started taking it.  But I didn't know that.  STAR*D's original conclusion was that after two antidepressants have been tried, subsequent results are dismal, and more research for better medications should be a priority.

Since then, a jillion articles have been written about how STAR*D was a lousy research design that cooked the books in way favor of the chemicals at every step, starting with the selection of subjects.  Click here for my posts that reference STAR*D.  But Google it for for what the scientists say.

Anyway, 221 to 8 against -- I would have given it a pass.  Even I could tell the books were cooked.  And I got so much better after I went off it.

And So The Manifesto Of A Lab Rat Concludes

Of course, your results may vary.  Just remember, it's your test tube.

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