Insider Guide for the Mentally Ill
and
People Who Care about Them

Under Construction

Currently writing and re-writing part one and soliciting personal stories for part two.

Part One

Foreword

This book is composed of two parts.  The first contains a short history of psychiatry followed by proven management techniques.  These are then grounded by a simple model which explains the genesis of most cases of bipolar mood disorder and schizophrenia.  People who are dependent on explaining mental illness as a biological and permanent condition -- most frequently the patient's sick families and colleagues -- are likely to be discomfited by the notion that mental illness has important environmental factors.

Acknowledgements

Every now and then we are lucky enough to come across a flash of insight that makes brings a solution into view.  I would like to thank Mrs. Joel Moses, petite Irish wife of the formerly huge MIT provost, for such a moment.  A remark she made caused me to realize that a general theory of mood swings might be realized though a simple insight.  The modeling approach known to engineers and economists as "system dynamics" shows that even quite simple models can give rise to complex behavior.  Such a model of mental illness is presented in the second chapter.

Dr. Peter Breggin and Robert Whitaker are valuable critics of bio-psychiatry.  I would like to thank Drs. Holly B. Sweet at MIT and Feelie Lee, wife of Alan Grinnell at UCLA, for their timely and freely offered therapeutic conversations, and Dr. Henry Grunebaum of Cambridge, Massachusetts, for validating a non-drug approach.  I would especially like to thank Harriet Taber for including her lessons in human psychology and particularly for referring me to the writings of Alice Miller.  A child's desire to please a parent is both a blessing and a curse.

Preface

Both the society at large and the patients would like to believe in miraculous pills.  The media will hide evidence to the contrary.  For example, John Nash --- who received the 1994 Nobel Prize for work in mathematics done before being diagnosed with schizophrenia --- says that he stopped using medication in the early 1970's and that doing so was important to his recovery.  Despite this, the movie, A Brilliant Mind, leaves the audience with the impression that medication was essential.  Nash denies this and says that his recovery was made possible by ceasing the treatments then recommended.

Though drug therapies can play an important role in treatment, the terms “chemical imbalance” and "genetic factors" imply a lifelong illness.  This can sound like a life sentence which is met with denial.  Others may be pleased to have an excuse for their inappropriate behavior and seek refuge in the diagnosis.  These are the patients who are most vulnerable to the predations of the medical-pharmaceutical complex.  They may pile one misadventure upon another or they may retreat into a cocoon and refuse to participate in the world.   Either way, they refuse to take personal responsibility and repeatedly end up in the care of psychiatrists. 

Journalist Robert Whitaker reported on studies performed by the World Health Organization in the late 1980's.  The finding about care in the US and UK was so shocking that the study was immediately repeated.  It also showed that newly diagnosed schizophrenics recovered much more quickly in relatively undeveloped countries such as India and China.  Approximately two-thirds of the newly diagnosed patients returned to a normal life and integration in society within a few years whereas in the US and the UK only about 1/3 re-integrated.  Why were the odds of recovery only 1/2 as good in the developed countries?  The principal difference is that patients were being prescribed too much Haldol.  Newer generation anti-psychotic or anti-manic medications are much less powerful and Haldol has since been shown by more humanitarian researchers to be better at lower doses. 

Yet it is not at all clear that the pharmaceutical companies and doctors have started to properly validate their treatments against placebo and non-drug interventions.  In fact, when drug based  approaches have been compared with respectful care and intensive support in the US and abroad, the latter have led to clearly superior outcomes.  However, only in Finland has that led to a societal mandate for relatively expensive short to medium term non-drug therapies.  About 1/4 of hospital admissions are for psychiatric reasons and making hospital stays more pleasant.  Would making the stays more pleasant not increase demand and the burden of public health care?  In the short term, it could.  But people learn best by example and humane treatment teaches people to be good.

Similar corruptions arise in almost every context in which mental illness is discussed, at least in the United States.  Suggested biochemical causes are quasi-explanations for psychiatric ills.  Of course, the brain is bio-chemical in nature.  That much is obvious.  What is not at all obvious is how the biochemistry gives rise to the behaviors that are deemed to be objectionable.  It is highly manipulative when doctors make people believe that constant medication is needed to manage such behavior. The only drugs that are obviously effective are those that suppress acting up like Zyprexa, Risperdal and Haldol (now generic).  They inhibit all impulses, including laudable needs for self-expression and creativity.  The process by which these drugs are approved is lampooned in this book review:

The blame for the foisting of patients on doctors also falls on the society at large.  Material desires and consequent work demands leave people with less time for each other.  Need a friend?  Just rent someone to listen as you kvetch.  Many people who would rather have a troubled person sent away rather than deal personally with the nettlesome issues they raise, often about themselves.  Yes, our society is full of narcissists and no, they don't have time for "other people's problems".

Those sent away would like nothing more than the promise of a quick fix or a good excuse that will make all their bad experiences be forgotten or excused.  These patients grasp at the doctors' quick and facile explanations and then become dependent on the excuse.   

They could instead  that a) I didn't have to be bipolar, and b) that none of the drugs could possibly work except in combination with an effective talk therapy and, even then, that the drugs are probably more often responsible for retarding progress.  This, and the long term risks of drugs to both mind and body (at least one of the commonly prescribed drugs (Depakote) is a mutagen that may cause cancer), ought to cause doctors to prescribe them very tentatively, and for a limited time only.  Instead prescriptions are easy to obtain and long-term drug maintenance is the norm.

The anti-psychotics do provide relief for mania but knowing when and how to use them is crucial.  The most effective drugs are the anti-manic and anti-psychotic medications like olanzapine (Zyprexa) for those times when thoughts cascade like an avalanche.  Still, many patients view the pills with disdain because of unpleasant effects such as feeling thick headed, wobbly and without ambition.  (We should not expect non-patients to learn this by experience since it is illegal to try someone else's prescription.  And we certainly should not expect psychiatrists to have gained this knowledge of drug effects first hand --- no matter how informative that might be, it is considered "unprofessional".)  Patients are right to resist long term reliance on drugs that may result in a life with greatly reduced ambition and achievement --- as well as other side effects like weight gain and ensuing complications, like diabetes --- and probably feel in their souls that the prescriptions are just a diversion from learning to control themselves.

Proposing anti-psychotics as palliative and temporary measures would reduce resistance to using them when they are most needed to curtail manias.  (It should be noted that some patients are so damaged, or have used anti-psychotics long enough to develop dependencies, that rapid withdrawal can lead to rebound manias with psychosis.  In such cases only gradual reduction is possible.)  

True recovery depends on understanding and repairing the maladaptive behaviors.  That requires that they be examined in context.  Belief in an exogenous cause beyond the control of the patient or his others serves the needs not only the psychiatrist but also those around him and, in the short run at least, often the patient.  With such forces at play, is it any wonder that medication is gladly received, and that the diagnostic categories are being aggressively expanded to include the children of busy parents?

Mental illness rarely arises in a vacuum but occurs settings with other people such as family, lovers, friends, co-workers and neighbors.  What I expect to provide here is a framework that will make it possible to for you to understand your role regardless of how you came to be reading this.  You should be ready to undergo a self-examination --- even if you arrived here as a care giver or interested other.  

If you don't have the time and energy for this kind of process, then by all means take the quick and easy route...  When the doctor says that the patient has a bio-chemical problem, then accept that medication is the central element of treatment.  Should the patient go off medication because of the side-effects, then problematize the patient further.  After all, its their fault that they are not taking medications to get better, right?  What more can you be expected to do?  Nothing.  Save yourself from the patient.  Make him or her wrong for not taking care of his or her own needs by, for example, popping a pill.  Cut yourself off.  After all, there is nothing more that you can do.  You'll have no difficulty in finding a psychiatrist to justify your approach.  Just don't be surprised if everyone you know accepts your conclusions and also rejects the patient so that he or she becomes marginalized and isolated by the obvious consensus and commits suicide as 15% of US manic-depressives are reported to do.

Chapter 1
Mental Illness can be Cured

An informed patient would demand to be cured if their mental illness were to be deemed curable.  Many people who are diagnosed with a mental illness do get better spontaneously and there is good evidence to suggest that a vast majority would get better if simply left alone.  This should not be in the least surprising.  Most medical ailments take care of themselves.  But with mental illness, this possibility is hardly ever raised or voiced by ex-patients.  People who have been diagnosed with bipolar illness and are now free of both symptoms and drugs also generally wish to be free of stigma.  They quietly move on with their lives and neglect to mention their medical history.  That's understandable.

What is unacceptable is that among the twenty-odd psychiatrists I have seen -- enough generally to provide a statistically valid sample -- none have emphasized the point that full recovery is possible.  Only one or two even bothered to mention it.  Why?  It is obvious that psychiatrists and the pharmaceutical companies have clear conflicts of interest.  If patients get well and don't need them, then doctors and drug companies cannot grow wealthy from long term treatments.  Medical professionals have a legal right to omit important information like non-treatment recovery rates... just like any other profession concerned with sales and sustainable revenues.  

We might wish for higher ethical standards from medical practitioners, but the history of psychiatry should not lead us to expect it. Psychiatric practices are barely emerging from horrific violations of the Hippocratic Oath to "do no harm".   A century and more ago, the institutionally sanctioned abuse featured dunking patients to near drowning.  The 20th century brought even more insane perversions of the medical mission: the discovery of lobotomy by Dr. Antônio Egas Moniz. 

Walter Freeman, the most ardent practitioner in the US, revived the practice with a faster procedure.  Freeman inserted ice-pick like instruments through the eye orbits into the forebrains of some 4000 patients and then waved them around --- with the full cognizance of medical colleagues and the press.  He even held demonstrations where he performed this standard medical procedure on assembly lines of patients.  In seconds, he severed connections essential to imagination and ambition. Over two decades, some fifty thousand were subjected to this treatment; almost all became imbeciles.  The most amazing thing is that this Mengele-like procedure was professionally sanctioned.  Freeman never lost a malpractice case and Moniz received one-half of the 1949 Nobel Prize in medicine.

Psychiatric treatments have changed but the practitioners ethics have not.  Treatments continue to be given with almost no consideration of long-term effects.

Such leucotomies killed 5% of patients outright.  So the profession welcomed new drugs like Metrazole, Thorazine, insulin and Haldol which lobotomized chemically and much less morbidly.  The treatments began to be used with greater abandon on obstreperous adolescents and other misfits.  The primary aim remained to quiet down persons who were mad as in angry, anti-social and given to paranoia such as naturally arises when one is rejected by others.  While several research programs have shown that respect and careful nurturing leads to the best outcomes, such approaches are labor intensive and do not generate high incomes with low effort.  While the new medicines allow doctors to be less like jail keepers and torturers, it is still not at all evident that their scientific methods or ethics have undergone necessary reforms.  The studies the of high touch approaches have been de-funded and largely ignored by the psychiatric profession.

One example that struck me personally when I met with Dr. Frederick K. Goodwin.  As the co-author of the professional's reference work Manic-Depressive Illness and former director of the National Institute on Mental Health, he is certainly among the most respected professionals in the bipolar sub-speciality .  He had remarked that he saw the manias and subsequent depression as a form of "energy balancing".  But when I asked him for a more precise description of the cause of bipolar illness, he was struck mute. While "energy balancing" might been acceptable from an uncertified and non-professional practitioner, and even useful to a patient with little insight into self, his failure to attempt a non-obvious answer illustrated just how little insight the profession has, seeks or wishes to share with patients.  

Indeed, almost none of the researchers are looking to develop a clear, simple and accurate explanation of the genesis of mental illness which appeals to innate desires for understanding, self-control and self-determination.  Or which could result in cures.  There are no great wages in that, and probably no end of professional derision for trying.  So the motivation for this guide is frustration with a society that does not understand mental illness, and anger with a profession is perfectly content to sow self-serving half-truths.  

Chapter Two
How Can Bipolar Illness be Recognized (and what is the risk from diagnosis)?

“There is a limit to the legitimate interference of collective opinion with individual independence; and to find that limit, and maintain it against encroachment, is as indispensable to a good condition of human affairs, as protection against political despotism.” —John Stuart Mill, On Liberty

The American Psychiatric Association has reissued the Diagnostic and Statistical Manual of Mental Disorder (DSM)  every decade or so with an increasing number of categories and refined criteria for mental illnesses.  According to the DSM-IV, three of the features below are needed to diagnose mania (four if the mood is only irritable):
·          inflated self-esteem or grandiosity
·         decreased need for sleep (e.g., feels rested after only 3 hours of sleep)
·         more talkative than usual or pressure to keep talking
·         flight of ideas or subjective experience that thoughts are racing
·         distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli)
·         increased goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation
·         excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments) 

This seemingly foolproof checklist obscures the fact that diagnosis of mental illness is not only subjective but also represents a wide range of severity.  Insanity is experienced to a greater or lesser extent by anyone who has a mistaken belief and acts inappropriately on it.  Little insanities occur daily for everyone.  Stress amplifies them and major errors in the thought process can occur in any person exposed to a sufficiently high degree of stress.  It does not matter if the stress is internally or externally generated.  From the standpoint of physiologic indicators, there is no difference.  Internal stressors can have as much effect as battlefield conditions.

Mental activity and mood range over a continuous scale along with basic physiologic parameters and metabolic rate.  Heart rate and blood pressure are readily measured indicators.  Continuous monitoring of heart rate and blood pressure is simple with relatively inexpensive and accurate wristwatches and devices about the size of two packs of playing cards.  The graph depicts the relationship that the author observed over a period of ten years and well over one thousand trials.  Patients, particularly newly diagnosed ones, can read heart rate or blood pressure for themselves.  If they have an enlightened doctor, they might even get permission to adjust their doses of anti-manic medications accordingly.

Regarding the inheritability of manic-depression, there are obviously going to be genes that make people less mentally fit and therefore prone to illness.  So there is an understandable scientific impulse to validate these criteria by finding genetic deficits that could lead to highly targeted drugs.  Many gene studies have been carried out but the results are usually below the 95% confidence level.  Taking account of the large number of such studies, there is a likelihood that some will meet the .95 certainty level that is standard for reporting scientific results.  Often, these reports get picked up by the press even though they ought to be considered inconclusive in the context of a larger number failed studies (see sidebar).  What we really know from the genetic research so far is that it is quite unlikely that any single gene for bipolar illness will ever be found. 

While the quest for holy grail of a genetic cause may sometimes be sincere, the reliance on genetics as a means of explaining and treating mental illness is hugely irrelevant to the treatment of patients today.  It leads to characterizing bipolar illness as a binary condition that is either present or not, and which exists entirely independently of the patients' daily circumstances.  

Such falsehoods lead directly to improper care though they do  suit the patients' and their others' immediate desires to deflect the problems they are experiencing.  Creation of an external bogey, the biochemical deficit, means that nobody --- not the patient, not the parents, not the teachers or co-workers or anybody --- can be faulted.  This can provide short-term relief by stopping recriminations about past events and helping to get a fresh start.  But it also reinforces misperceptions that can severely hamper fundamental recovery.  

Much worse, it can lead the patient to justify himself according to the, "I am not responsible for the disease so my actions are not my fault" line of reasoning.  This leads to a victim's syndrome with continuing symptoms of mental illness that can then be compounded by the undesirable side effects of the multiple concurrent drugs that psychiatrists all too frequently prescribe.  The most tragic of such cases are the highly medicated long-term patients with severe complications from treatment.  They are a real double-bind for the medical community because clearly illuminating the victim's syndrome implicates doctors in aiding and abetting it.  

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