New Research Project to be Funded by the Foundation for Excellence in Mental Health Care


“The Long-Term Use of Antipsychotic Medications for Schizophrenia Patients: Does it Eliminate Psychosis and Facilitate Recovery?”
Martin Harrow, Ph.D.

Description: Over the last 30 years Dr. Martin Harrow, Ph.D., Professor and Director of the Psychology Department of Psychiatry, University of Illinois College of Medicine, has collected data from over 1000 interviews from people who have lived experience with mental illness. His research has been the basis for a number of papers delineating the effect of medications on those he interviewed.

Further analysis of the data would answer several questions that would provide the basis for a series of important papers to better understand the long term effects of anti-psychotics in the treatment of schizophrenia.


1. Does long-term use of antipsychotics eliminate (or increase) psychosis?
2. Do many schizophrenia patients on long-term antipsychotics have
psychotic features frequently or rarely?
3. What about severity of psychosis?
4. Is long-term use of antipsychotics associated with severity of psychosis?
5. Does long-term use of antipsychotics lead to or detract from
comprehensive global recovery?
6. Is long-term use of antipsychotics, which are apparently associated with
potential brain shrinking, associated with increases, decreases, or no
change in cognitive skills?
7. Is long-term use of antipsychotics associated with positive instrumental
work functioning (and social contacts) or with lower levels in these areas?
8. What are the costs to the Country of schizophrenia?
9. Are rates of rehospitalization higher for patients with schizophrenia who
have continuous use of antipsychotics for years than those that don’t?

These questions will be organized into four separate papers examining the 1) Use of Anti-psychotics, 2) Psychosis, 3) Recovery in Schizophrenia, and 4) Rehospitalization and work functioning.

Dr. Harrow indicates “I am very pleased to work with and receive funds from the Foundation for Excellence in Mental Health Care. I regard it as potentially a very productive association which could advance knowledge about the treatment of people with severe mental illness.”

My hope is that Dr. Harrow’s analysis of the data he has collected will help build a strong data base with answers to questions about long-term use of antipsychotics in which support professionals changing their practices.

For more information on how you can help donate to and fund changes in mental health care please go to


Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.


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  1. I’m not interested in any study that starts out using the term schizophrenia. It is the language of those would oppress us. Once you use the language of the oppressor they control they not only control the language they control the way we think about ourselves. To me this is unacceptable.

    I recommend Mary Boyles paper. “It’s all done with smoke and mirrors. Or, how to create the illusion of a schizophrenic brain disease”

    From the paper “In this paper, I shall discuss some of the main ways in which the credibility and reasonableness of the belief in schizophrenia as a brain disease is created and maintained; before I do that, however, it is important to note that this belief obviously implies a prior belief in “schizophrenia” and, since “schizophrenia” is consistently presented as a diagnosable illness which causes bizarre behaviour and mental experiences, the scene is set for acceptance of the idea of schizophrenia as brain disorder, albeit one whose precise nature is unknown. This in itself is perhaps a powerful enough mechanism to account for the credibility of the belief, but there are other mechanisms which are worth discussing, for at least two reasons. First, those who want to disseminate alternative models of psychotic behaviour and experience may be dispirited by the sheer persistence of the belief in schizophrenia as a brain disorder and want to reflect on some possible reasons for this persistence; second, those who are open to alternative models may still find themselves pulled between these and the apparent credibility of the belief in schizophrenia as a brain disease. One further point should be emphasised. I’m not suggesting that any of the mechanisms I’ll discuss are planned or even consciously used. On the contrary, at least some of them might seem simply like “doing science”. I would argue, however, that it is difficult to over-estimate the threat presented by criticisms of the biological basis of schizophrenia and of the idea of schizophrenia itself, and that it would be naive not to expect defensive and anxiety-reducing measures to be (consciously or unconsciously) taken.”

    Reprinted from Clinical Psychology Issue 12. April 2002 pp 9-16

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  2. 8. What are the costs to the Country of schizophrenia?

    I hope lots of people are offended and sickened by this question. I am. Until we have research that doesn’t ask “how sick are these people” and doesn’t value human beings in terms of dollars earned or “lost to the economy by them” we don’t have research worth talking about.

    How about a study that measures the human cost in terms of the misery caused by the use of bigoted labels like schizophrenia?

    Anyone who uses this term is deluding themselves if they think they are making a contribution on my behalf. They are not.

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    • Question #9: What is the cost to the US economy in lost producitivity due to the existence of 50,000 psychiatrists in America (one of the highest per capita in the world)?

      But I doubt any scientific researchers want to take up that line of inquiry or “framing of language”.

      Which is why the world needs investigative reporters like Whitaker who can look past the “science” of psychiatry and look to the cultural results of rising disability and premature death.

      What is the societal cost of convincing one “schizophrenic” that having children is irresponsible and effectively eugenicizing them with fertility and sex drive lowering heavy tranquilers for the rest of their unnaturally shorter life? Do scientists ever think about that one?

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      • All good questions and ones that should be discussed. I believe Bob Whitaker examines and looks squarely at existing science to begin to ask questions that up until now the mainstream has not been willing to discuss at large. I hope all of us are part of changing how we discuss and address mental health challenges and together create a new mainstream.

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  3. Dear Poet,

    My hope is that by getting an answer to question 8 we can then use the answer to reframe the current diagnosis and practice model to suggest these dollars be better spent on human wellness and support not misery.

    I like your study question….Let’s get some proposals that pose to answer the question, “What is the human cost in terms of the misery caused by being labeled.” These labels were created in the past to define some people’s experiences and we have to work together to help get beyond this.

    Thank you for your post!

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    • Hope is certainly a crucial ingredient in human motivation, Gina.

      Yet are we each challenged to define, to what degree self-preservation motivates our individual hopes? In the professional ranks of society such as the esteemed PhD, how does one feed oneself and one’s family? On a base level of survival needs, does research funding have anything to do with the feeding needs of self-preservation?

      Its a tough question I know and may be felt as a personal attack, which is not my intention, yet the dear poet raises a serious question about the way civil society actually works, in our tendency to judge and label each other?

      As some rather cynical philosophers note, “civilization is paid for by human misery?” Essentially suggesting that one section of society feeds of the other, in the creation and maintenance of so-called civilization.

      When you suggest “we have to work together to help get beyond this,” are you indicating that your actually working “with” schizophrenics, or studying them?

      Again, this not intended as a personal attack on you, but with the now obvious failure of the medical-model of human dysfunction in experiences of altered states of mind, are we now coming full circle, back to Freud’s unconscious motivations in the emotional dynamics of human life?

      Sincere regards,

      David Bates.

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      • David,

        The Foundation for Excellence in Mental Health Care was created by a number of people around the world, both people with lived experience and those trying to help, in response to reading Robert Whitaker’s book “Anatomy of an Epidemic” to tap private philanthropy to fund research, programs, and dialogue that will change practice and the way our society views mental health challenges. Language is so important.



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  4. I recently attended the Institute of Psychiatric Services meeting and I heard Will Hall speak. He mentioned that he was going to be leaving from this talk to address the Occupy Psychiatry group. He used this as a metaphor for his intent to build bridges.
    On this site, a commentator brought an essay by Thomas Insel to my attention. He is the director of NIMH. In this essay called, “Words Matter” he quoted a former director of NIMH who referred to current DSM diagnoses as “fictive categories”.
    The point I want to make is that it is important to build a bridge from the perspective of many who read and comment here to so-called mainstream psychiatry. In the process of building that bridge, we may need to use some of the language that is used in psychiatry. The use of that language should not be seen as an endorsement of concepts. Even those at the NIMH do not think the concept of diagnoses in the DSM are valid.
    Without these bridges, I fear that the work done here will not have an impact on changing psychiatry. For those whose primary goal is to dismantle or end psychiatry, perhaps this is not important. But to change or influence psychiatry, one needs to use and study their concepts. Martin Harrow’s data is a crucial piece of why so many of us no longer believe that the construct “schizophrenia” is valid.
    Gina- thanks for posting. I am looking forward to following the results of this important work.

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  5. I agree with Sandy – in order to get real change happening, we have to start using at least some of the language that is used by the people we’re talking to, or we’ll have no common basis for discussion. At the same time, Mary Boyles’ essay shows us how we can use those terms to explain what we’re talking about while still making it clear we don’t buy into the concept being implied by the label. In this way, we can start to get behind the label and look at the labeling process itself, which I and others have pointed out is what really provides the cover/impetus/ rationalization for all the rest of the dangerous nonsense about brain diseases.

    I often resort to using things like quotation marks around diagnostic labels or saying, “people who have been labeled with the schizophrenia diagnosis” or “people who have been viewed by the current system as qualifying for an ADHD diagnosis.” This is usually digestible by people who need to believe in the labels, but allows a broader discussion to occur about whether those labels really have any legitimacy at all.

    I do think this kind of work is essential, even though it feels a bit like an unacceptable compromise to even ask questions in the form they are asked. People are going to do research on “schizophrenia” whether we like it or not. I think it’s awesome that some funding will go to asking the question of whether treatments for so-called “schizophrenia” might be worse than the purported “disease,” even when I don’t agree that the “disease” is really a disease at all.

    —- Steve

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  6. How do we define or differentiate our sense-of-self? Is it done with a judgment of otherness and how “I” measure up? When in the presence of the kind of “otherness” in altered states of mind, “it would be naive not to expect defensive and anxiety-reducing measures to be (consciously or unconsciously) taken.”

    Is there a deep unconscious fear of otherness, which allows “labeling” to persist, while we differentiate a sense-of-self here in the public domain, with an intellectual posture that does not address the primary-process reality of our actual behavior. Behavior that ignores previous studies in favor of doing more studies? Should we be studying a normal preference to ignore whatever makes our sense-of-self feel uncomfortable? Like why does the majority of Finnish society choose to ignore the results of the open dialogue approach to first episode psychosis? Should we be calling for studies into normal behavior rather than doing more studies on abnormal behavior?

    Why does mainstream society prefer to ignore uncomfortable realities, with a preference for “out of sight, out of mind?”
    Does the biological disease model neatly excuse our innate fear of otherness and justify our unconscious need to define a sense-of-self by a judgment of what we are not? Do we actually define our sense-of-self through a mechanism of emotional projection in a judgment of otherness? Consider the kind of fearless thinking of the 1950’s, in a reaction to carnage of two world wars and desire to improve human potential by through open and honest observation of behavioral functioning;

    “The societal projection process: The family projection process is as vigorous in society as it is in the family. The essential ingredients are anxiety and three people. Two people get together and enhance their functioning at the expense of a third, the “scapegoated” one. Social scientists use the word scapegoat , I prefer the term “projection process,” to indicate a reciprocal process in which the twosome can force the third into submission, or the process is more mutual, or the third can force the other two to treat him as inferior.

    The biggest group of societal scapegoats are the hundreds of thousands of mental patients in institutions. People can be held there against their wishes, or stay voluntarily, or they can force society to keep them there as objects of pity. All society gains something from the benevolent posture to this segment of people. A fair percentage of people are too impaired to ever exist outside the institution where they will remain for life as permanently impaired objects of the projection process.

    The conventional steps in the examination, diagnosis, hospitalization, and treatment of “mental patients” are so fixed as a part of medicine, psychiatry, and all interlocking medical, legal, and social systems that change is difficult. There are other projection processes. Society is creating more ‘patients” of people with dysfunctions whose dysfunctions are a product of the projection process. Alcoholism is a good example. At the very time alcoholism was being understood as the product of family relationships, the concept of ‘alcoholism as a disease” finally came into general acceptance.

    There might be some advantage to treating it as a disease rather than a social offense, but labeling with a diagnosis invokes the ills of the societal projection process, it helps fix the problem in the patient, and it absolves the family and society of their contribution. Other categories of functional dysfunctions are in the process of being called sickness. The total trend is seen as the product of a lower level of self in society. If, and when, society pulls up to a higher level of functioning such issues will be automatically modified to fit the new level of differentation. To debate such a specific issue in society, with the amount of intense emotion in the issue, would result in non-productive polarization and further fixation of current policy and procedures.” _Murray Bowen.

    Why did mainstream psychiatry-society choose to ignore Loren Mosher’s work and the reality of the outcomes of the Soteria experiment, just as Finnish mainstream psychiatry-society chooses to ignore Open Dialogue? Consider Loren’s thoughts on our social-nature;

    “No longer do we seek to understand whole persons in their social contexts,” he continued. “Rather we are there to realign our patients’ neurotransmitters.” Mosher further charged that the American Psychiatric Association had “entered into an unholy alliance” with the National Alliance for the Mentally Ill, the powerful group founded and controlled by the parents of schizophrenics. “The two organizations have adopted similar public belief systems about the nature of madness. While professing itself the ‘champion of their clients,’ the APA is supporting nonclients, the parents, in their wishes to be in control, via legally enforced dependency, of their mad/bad offspring.… ‘Biologically based brain diseases’ are certainly convenient for families and practitioners alike. It is no-fault insurance against personal responsibility. We are all just helplessly caught up in a swirl of brain pathology for which no one, except DNA, is responsible.

    In the United States, however, Mosher confesses to feeling hopeless about the future of anyone misfortunate enough to receive the label he so hates. When asked what words he prefers instead of “schizophrenic” or “mentally ill,” Mosher responds, “Why not call it a severe personal emotional crisis? Or a severe psychological crisis? Why not call it disturbed and disturbing behavior — a pretty good description, since that’s how it looks from the outside. There are lots of ways of recognizing that these folks are acting in ways which are unconventional — and that still recognize they’re in severe psychological pain.”

    Today Mosher calls himself “a lapsed psychiatrist” because he thinks the biological explanations of psychotic behavior embraced by so many of his colleagues resemble a religion more than they do a body of science. From his perspective as a heretic, he reflects, “We are all afraid of going crazy. And as long as we have someone out there who can sort of do that job for us, it’s not our burden.” He thinks it’s comforting to believe schizophrenics act the way they do because their brains are diseased. Biological differences “make them different from us fundamentally,” he says. “They’re sort of a slightly different race than we are.” Mosher thinks it’s all “a way of carefully saying, ‘These people are really different. And therefore we have the right to do whatever we goddamn please with them.”

    After all these years, is it really cause for hopeful celebration of yet more research and study which keeps the focus on “them” as other than, while neatly avoiding the reality of our normal sense-of-self and how we create this feeling?

    Perhaps we ask the wrong questions? Should we be calling for studies into so-called normality, and the way it really functions? As Loren Mosher points out, “We are all afraid of going crazy. And as long as we have someone out there who can sort of do that job for us, it’s not our burden.”


    David Bates.

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  7. Message to: Gina Nikkel, Ph.D. Executive Director of the Foundation for Excellence in Mental Health Care (FEMHC)

    Posted on

    Date: 10/10/12

    From: Maria Mangicaro

    ISSUE: Are research subjects suffering from psychosis being deprived best practice standards of care and misdiagnosed as schizophrenic?

    Among successful businesses, best-practice standards are used to achieve cost effective strategies.

    According to the British Medical Journal’s best-practice assessment guidelines, the most common cause of acute psychosis is drug toxicity from recreational, prescription, or OTC drugs.

    It is not clear whether Dr. Harrow will make this distinction in his research.

    On Sept. 5 Mad in America, Inc. blogger psychiatrist Dr. Sandra Steingard stated that my summary of Anatomy pasted below is “incredibly articulate and clear”

    My interpretation (summarized) of Robert Whitaker’s beliefs regarding the treatment of psychosis are:

    – the research supports short term efficacy of antipsychotics and long-term chronicity

    – the comparison research from 1945-55 involved treating psychotic episodes with hospitalizations that lasted between 12 months and five years.

    – his book is not a medical advice book and does not encourage patients to go off of medications (although some psychiatric patients have gone off medications after reading Anatomy)

    – he believes psychiatric medications have a place in mental health care

    – Anatomy of an Epidemic does not take an anti-medication position and is in fact a “pro-med”, best use practice

    – when considering psychotic patients, some will do better off meds, while others do better on meds

    – he believes the psychophramacology paradigm is a failed revolution

    – psychotic episodes have flu-like characteristics of coming and going on their own, treatment with medication is the best approach to quickly stabilize

    – his appeal is to create a national discussion that incorporates the long-term data

    Pasted below are some of the email exchanges that I have had with Bob over the past three years that I would like you to consider:

    1. APA seems to embrace psychotherapy/cognitive therapy Thu, May 10, 2012 4:01 am

    Hi Maria,

    I was speaking to a group of primary care physicians yesterday, and this very point came up. And that is, in the past, the first thing doctors did when presented with someone with psychiatric symptoms was think of possible physical causes (thyroid, vitamin and mineral deficiencies,), and of course environmental toxins.

    And your letter does highlight part of the problem, which is that those against the drug model usually have their own horse they want to ride, which is talk therapy, or some other form of therapy.

    But you are right–I think nutrition, environmental toxins, lack of sleep, other medications, etc., should be seen as possible culprits for psychosis (whenever someone presents with such.)

    All the best,


    2. Integrative Psychiatry/Medicine Thu, Oct 6, 2011 8:49 am

    HI Maria,

    Thank you for this.

    I am very much looking forward to Dr. Shannon’s presentation. I also think that your story illustrates that when someone experiences a manic or psychotic episode, the first thing doctors should look for are agents (such as chemical exposure, psychoactive drugs–illicit or licit) that could have triggered such episodes.

    I hope that integrative psychiatry becomes the future.


    3. Article: After Soteria House Shooting Victim Dies, Questions Remain July 24 2011

    Hi Maria,

    What happened at Soteria is such a tragedy. What the article didn’t state is that the woman who was killed was one of the home’s real success stories. She had gotten off medications and was doing so well. Her death is so heartbreaking.

    Regarding your other point here, well, I think all of psychiatry needs to think about this point, which is that many things can induce psychosis, including other medications, and thus they avoid seeing psychosis as necessarily a sign of mental illness. Physicians a century ago regularly thought that psychosis could result from poisoning, other diseases, etc.

    I recently was at an event where one of the psychiatrists said that he believed that 80% of those diagnosed with schizophrenia in recent years had been doing illicit drugs before they had their psychotic break.

    all the best,


    4. Talk by e-Patient Dave from the Society of Participatory Medicine Wed, Jul 6, 2011 10:52 am

    Hi Maria,

    It was nice to meet Dr. Sinaikin there, and all in all, the conference was decent, and actually not too radical.

    I’m sorry to hear that ICSPP didn’t show much interest in Dr. Kohl’s presentation.

    And I agree with you on this–many, many things can induce psychosis (illicit drugs, lack of sleep, physical illnesses, etc.), and it’s a mistake to lump psychosis into one large cagtegory.

    I think the old adage of doctors needing to take a detailed case history (which is a form of participatory medicine) needs to be recalled and reintegrated into practice.

    Psychosis is just a symptom of something amiss, and often, not a disease unto itself.

    Thanks for this link. I’ll check it out.


    I am of the belief that Bob’s research on psychotic disorders points to Integrative Psychiatry/Functional Medicine as providing a best-practice standard of care for patients suffering from symptoms of mania/psychosis.

    I recognize antipsychotic medications as a tool used to control symptoms of psychosis, not eliminate them.

    Testing for and treating the underlying causes of psychotic symptoms is the best possible option to try and eliminate them.

    Bob’s statements and research point to a mismanagement of psychotic disorders on the part of both main stream psychiatrists and psychologists.

    His analysis of the data he has collected supports professionals changing their practices to incorporate the use of integrative psychiatry.

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    • Maria,

      From your reply: “ISSUE: Are research subjects suffering from psychosis being deprived best practice standards of care and misdiagnosed as schizophrenic?”

      “It is not clear whether Dr. Harrow will make this distinction in his research.”

      This is a good question and certainly one I can ask for clarification on and what his thoughts are.

      I appreciate you sharing your conversations with Bob. I would again underscore that the research in “Anatomy of an Epidemic” is not Bob’s research. He looked at industry research with an investigative medical journalists eyes and draws conclusions that warrant serious dialogue about further research, changing practice and the current “standard of care”.

      Thanks for your comments.


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      • Gina,

        By the term “research” I mean the time and effort Bob spent pulling information out of the medical library and selecting individuals to interview in order to support the premise of Anatomy of an Epidemic.

        Bob’s background of course is that of a former Boston Globe reporter and not that of a clinical researcher.

        Do you know if Bob has ever taken a course in abnormal psychology?

        In my opinion, when it comes to symptoms of psychosis/mania, mental health care advocates could start speeding up the process of providing excellence in mental health care (as well as saving the money of tax payers and of course saving the lives of those they claim to advocate for) by working together for common goals.

        We need to consider that most mental health and medical professionals lean towards using the “Chinese menu” approach of applying the DSM labels of schizophrenia/bipolar, and fail to use Best Practice standards that test for and treat:

        1. underlying medical conditions
        2. substance-induced disorders
        3. medication-induced disorder

        Below is just one case of thousands of examples of an individual who suffered for 2 years because of the failure to recognize the underlying cause of her symptoms.

        I find it very sad that mental health care advocates spend so much time and energy disputing opinions and data and can not find ways of communicating more effectively on how to make improvements on issues they are in agreement on.

        Advocates need to start finding common grounds to support one another.

        For example, Dr. Torrey may criticize aspects of Bob’s books, but we need to consider what they both agree on and build from that.

        “In its 396 pages Whitaker got many things right, including criticism of the broad DSM diagnostic criteria for mental illnesses; the reckless prescribing of psychiatric drugs for children; and the prostitution of many psychiatric leaders for the pharmaceutical industry.”

        These are very important problems that should invite joint ventures in resolving.

        If all mental health advocates stood together and supported best practice assessment standards for psychosis that would help prevent patients from being misdiagnosed. What better way to start achieving excellence in mental health care than preventing needless suffering?

        Neuropsychiatric systemic lupus erythematosus presenting as bipolar I disorder with catatonic features.

        Psychosomatics. 2009 Sep-Oct;50(5):543-7.

        Alao AO, Chlebowski S, Chung C.


        Department of Psychiatry, SUNY Upstate, NY 13210, USA. [email protected]



        The American College of Rheumatology has defined 19 neuropsychiatric syndromes associated with systemic lupus erythematosus (SLE) involving the central, peripheral, and autonomic nervous systems. Neuropsychiatric manifestations of lupus (NPSLE) have been shown to occur in up to 95% of pediatric patients with SLE.


        The authors describe a 15-year-old African American young woman with a family history positive for bipolar I disorder and schizophrenia, who presented with symptoms consistent with an affective disorder.


        The patient was diagnosed with Bipolar I disorder with catatonic features and required multiple hospitalizations for mood disturbance. Two years after her initial presentation, the patient was noted to have a malar rash and subsequently underwent a full rheumatologic work-up, which revealed cerebral vasculitis.


        NPSLE was diagnosed and, after treatment with steroids, the patient improved substantially and no longer required further psychiatric medication or therapy.


        Given the especially high prevalence of NPSLE in pediatric patients with lupus, it is important for clinicians to recognize that neuropsychiatric symptoms in an adolescent patient may indeed be the initial manifestations of SLE, as opposed to a primary affective disorder.

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        • Gina,

          I would like to conduct an informal survey among mental health professionals and others who write about the treatment of psychosis and mania.

          If we consider symptoms of psychosis/mania could be caused by a number of medical conditions including but not limited to: brain tumors, cerebrovascular disease, Huntington’s disease, multiple sclerosis, Creitzfeld-Jakob disease, anti-NMDAR Encephalitis, herpes zoster-associated encephalitis, head trauma, infections such as neurosyphilis, epilepsy, auditory or visual nerve injury or impairment, deafness, migraine, endocrine disturbances, metabolic disturbances, vitamin B12 deficiency, a decrease in blood gases such as oxygen or carbon dioxide or imbalances in blood sugar levels, and autoimmune disorders

          then, we should all keep in mind that no person is immune from a manic/psychotic episode.

          This is the question I have for Dr. Harrow, Robert Whitaker, yourself and all others who blog on Mad in America: If you experienced an acute psychotic/manic episode, what treatment, if any, would you seek? and why?

          Kind Regards,
          Maria Mangicaro

          Posted on Mad in America dot com on 11/27/2012

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