A new multi-centered study was released about using cognitive therapy for young people who were seen as being at high risk of psychosis.

The article reporting the study is on the British Medical Journal website, available in full – http://www.bmj.com/content/344/bmj.e2233

It’s curious to see how it is being reported in the press.  One article, in todayonline, emphasized that the study results indicated that young people seen as having high risk for psychosis should not be given anti-psychotics, because of the high probability they aren’t going to get psychosis anyway, and it emphasized that cognitive therapy can reduce the intensity and frequency of psychotic experiences in those who do go on to become psychotic.  But another article, intended for medical people, emphasized the fact that cognitive therapy didn’t seem to alter the frequency of people who went “over the edge” into having some “psychotic” experience.

I think the todayonline article is catching the most important points.  What is really key is that we not give damaging drugs to a big group of young people just because a small minority of them might go on to have problems with psychosis in the future.  And we should be aware that cognitive therapy seems to provide some kind of benefit if we really want to try something that is relatively safe, even though it doesn’t provide nearly the benefit we would like, at least in its current form as practiced in this experiment.

One further thought:  it may be that providing some kind of human contact intervention may dramatically lower the rate of transition into psychosis but this study couldn’t detect such an effect.  That’s because for this study, being in the control group involved “monitoring of mental state alone (aimed to provide warm, empathic, and nonjudgmental face to face contact and supportive listening).”  Such empathetic listening itself provided by a non-judgmental person may itself be a significant intervention, itself interrupting the social isolation that often leads to psychosis.

I recently receive a tweet from Intervoice, that said “This is a odd research finding in my view, what do you think? http://fb.me/L9cs3NTR”

Curious, I clicked on the link, and found it described a study that found that children who experience more dyskinesia, or involuntary physical movement or spasms, also seemed to have more of the sorts of anomalous experiences, such as hearing voices, that suggest risk for later diagnosis of schizophrenia.

So what might that mean?

From a medical model point of view, it could mean that these children have some kind of brain defect that leaves them vulnerable to later developing the “illness” of schizophrenia.

But I would like to offer a slightly different hypothesis.

I think there may be some relationship between dyskinesia and dissociation.  That is, if I am out of touch with, or dissociated from, some impulse within myself to move in a certain way, then it can perhaps emerge in the form of a dyskinesia, an “involuntary” movement.  The movement seems to come from something other than me, and to happen on its own.

It may be that some are more prone to dissociation based on genetics, but we also know that life experience and trauma plays a key role.  Dissociation is not entirely a bad thing, it can help a person survive trauma and it plays a key role in many kinds of “altered states” which may enrich a person in various ways, including enhancing creativity, but it also can contribute to dysfunction and psychosis.  When we are out of touch with some thinking inside of us, as happens in dissociation, and then we do suddenly get in touch with it, it can seem to be something that is coming in from outside – a thought being beamed into our head, telepathy, a demon, a brain implant, all sorts of “psychotic” kinds of things.  But the core of it is just that something others see as part of us seems to us to be acting on its own or to be coming from outside of us, much as do “automatic movements” in dyskinesia.

(Those unfamiliar with the possible links between dissociation and psychosis might explore the article, “Are psychotic symptoms traumatic in origin and dissociative in kind?” by Andrew Moskowitz, Ph.D.   Or look at “Dissociation, trauma, and the role of lived experience: Toward a new conceptualization of voice hearing.” Whose lead author is Eleanor Longden, a psychologist who had had intense personal experience of that which she writes about.)

Why does it matter if there is a connection between dyskinesia and dissociation?

I think it matters because of what it suggests about the consequences of long term use of antipsychotics.  It is well known that long term antipsychotic drug use leads to a huge increase in tardive dyskinesia.  Some have also pointed out that long term use of antipsychotics also seems to reduce recovery rates from psychosis.  What I would like to suggest is that this worsening of outcome may be due to the same sort of mechanism that results in the creation of tardive dyskinesia.

When anti-psychotics “work” they do so by seeming to reduce “positive symptoms” of psychosis within the person.  For example, the person may either hears the voices less, or care less about what the voices say, etc.  It is typically hypothesized that this is a good thing.  But if the voices represent dissociated aspects of the person, the actual effect of not hearing them and/or not caring about what they say may be to perpetuate, rather than to possibly work through, the dissociation.  This may “feel better” or even work better in the short term than struggling with how to make sense of and integrate the voices, but it may lead in the long term to a “hardening” of the dissociation or splits within the person, so that healing or coming together becomes more difficult.

In other words, the effect of the drugs may be to make the voices become even more autonomous or split off from the person, just as the drugs result in tendencies to move the body, or dyskinesias, that are split off from the conscious will of the person.  The drugs also make the person not care about these split off autonomous parts (just as the person with tardive dyskinesia often doesn’t care about or notice the involuntary movements) but they cause problems nevertheless.

People who learn how to handle experiences such as hearing voices without medication typically talk about changing their relationship with the voices, and these changes typically allow the person to integrate the activity of the voices into their overall functioning.  But when antipsychotics are used to suppress voices and/or to suppress caring about voices, the relationship with the voices is simply suppressed rather than worked through or modified.

Instead (if my hypothesis is correct) the antipsychotics make the person become more separate from the person, that is, become more dissociated, while making people care less about what is happening.  At the same time they are likely to reinforce and create more involuntary movements or dyskinesia and to make people care less about that as well.  Not exactly the sorts of outcomes we should be encouraging.

A more informed mental health system would help people become aware that if there is something going in within them that is discordant in some way, that it really is better that they have some awareness of it, so they can struggle with it and figure out what it means, rather than just ignore and neglect it.  It may be helpful at times to put such experiences on the “back burner” for a bit, but ultimately our health depends on facing and making sense of such experiences, rather than trying to drug them away.  Long term use of the latter approach is likely to make permanent what could have been just a temporary and resolvable problem.

In the field of “psychosis” it seems that many things are discovered, then forgotten again, and it is left to future generations to rediscover them.

Carl Jung, one of the founding fathers of modern psychology, had a lot of insights about so-called “schizophrenia” that our modern mental health system has failed to incorporate.

While Jung had his flaws, it really is amazing how much he managed to understand at a time when he had no access to the research that is currently available, nor access to anything like the consumer/survivor movement that has highlighted many important issues.  I’m pasting in below most of an email written by Brian Koehler, where he first addresses the question of Jung’s degree of uncertainty about whether “schizophrenia” is ever “biological” and then where he which explores Jung’s thinking on a variety of related subjects.  I thought it was worth sharing, and I thank Brian for giving his permission to share it here. [continue reading…]

I like the concept of the proposed graphic novel described below.  I think it is critical that we address the role of the imagination in what gets called “schizophrenia” or “psychosis,” and that starts with recognizing it as imagination, and not calling it “illness” or “misfiring neurons.”  Once we recognize it as imagination, we can explore the paradoxes and dilemmas faced by people who find themselves lost in their imagination while awake.  And what better way to do that than in a work of imagination, as this author proposes?

Imaginarium

A Comics project in Philadelphia, PA by William Murakami-Brundage

Living in the Imaginarium is difficult. Ever since he set foot in the Otherworld, Aiden has been seeing things that aren’t there. Animals have been talking to him. His shadow keeps taunting him, and at one point ran off into the woods.

His family is confused, and his doctor says that Aiden has schizophrenia – but how do you escape the Imaginarium once you are within its boundaries? After all, the imagination is everywhere.

Help tell the story of how Aiden escapes from this other place and returns to the normal world. This work is a graphic novel about what it is like to have schizophrenia, the power of the Imaginary, and how being a little different can be a fantastic thing.

The author describes himself as follows:

By day I am a computer programmer, and in my spare time I write. In my previous career, I was a case manager for people with schizophrenia and severe mental illness. My goal is simple: Breathe some life into the stories that I have taken part in – I escaped the Imaginarium and recovered from schizophrenia.

You can sign up for a copy in advance, as well as help the author raise funds to complete the project, at this site.

I thought I would let you all know that I am now a blogger on the Mad in America site.  My plan is to still post everything I write here, but then to also post some articles there (the ones that fit the criteria that Robert Whitaker created for that site.)

I made my first post today, and on it I described my life story as it led to my becoming a mental health activist, as well as some ideas about how to go about being an activist – see
http://www.madinamerica.com/2012/02/personal-steps-toward-a-revolution-in-mental-health-care/.       Or you can find the same article on this site at http://recoveryfrompsychosis.org/about-ron-unger/personal-steps-toward-a-revolution-in-mental-health-care/

It was kind of fun to write the story, even if it was very condensed version!  I hope you all enjoy it.

One interest of mine is how people can learn skills so that they can better handle experiences like hearing voices.  One key problem with voices is that people often alternate between either trying too hard to get rid of them, or listening to them too much.  (There is a “bipolarity” to this, which I think connects with how the mental and emotional problems that get called “schizophrenia” and “bipolar” are not distinctly different.)

Anyway, the article below talks about skills people can learn to get over the side of the problem which is listening too much to the voices.  If one can learn to avoid listening too much to the voices, then the fact that they exist at all is not so much of a problem, which naturally might also help a person become less obsessed with getting rid of them.  And maybe help the mental health system get less obsessed with getting rid of them?

This article is available at
http://www.sciencedaily.com/releases/2012/02/120203092031.htm

Nathaniel Lehrman, M.D. recently posted his story of how he became psychotic, how he was treated, and then how he recovered despite the fact that much of his treatment was misguided.  This story provides some good insight into some of the dynamics that are common in the way our mental health system, which is supposed to help people find their balance, often just gets caught up in an imbalance opposite to the imbalance the consumer is experiencing.

What happened to Nathaniel was that in the middle period of his life he got into a political battle, which resulted in a number of people turning against him and causing him trouble.  His distress about this situation caused him to become hypervigilant for threat or “paranoid” which caused him to see more threat and threatening behavior than actually existed, and this resulted in his hospitalization.  Once in the hospital, he was treated as though all of his perception of threat was delusional, even though he had solid evidence that much of it was real.

In other words, while Nathaniel had become unbalanced in the sense of seeing more threat than actually existed, the hospital clearly took up the opposite sort of imbalance, seeing less threat than actually existed.  This is a very common dynamic when mental health professionals refuse to listen in detail to what consumers have to say, and refuse to acknowledge that real life situations may be quite complex, with real perceptions mixing in with mistaken ones.

In the better psychological approaches, like CBT for psychosis, or Open Dialogue, professionals take an interest in what consumers say, and they don’t assume they know for sure what is real and what is not.  Instead, they encourage looking at the subject from multiple points of view, in a thoughtful, reflective way.  This allows truths to emerge, and imbalances on both sides, within the consumer or the mental health system, are gradually reduced.

Nathaniel was lucky enough to have his psychotic episode when he was already middle aged and a successful psychiatrist, so he was not overwhelmed by those who didn’t take him seriously, and he managed to find his own pathway toward recovery.  But many of those who enter the mental health system don’t have these kinds of strengths, and they are likely to get caught up in a vicious circle, in which they respond to the mental health system minimization of their beliefs by emphasizing their own beliefs more strongly, which causes the mental health system to see them as even more crazy and becomes even less willing to listen for any truth in what they might be saying, etc.  This is one way what might be a temporary imbalance becomes a “chronic disorder” due to poor treatment.

In some other cases, a delusional belief may be literally impossible, but still has a bit of truth in the sense that it is a metaphor for something that is really going on.  A competent mental health system would be curious about this kind of truth as well, rather than just completely dismissing the belief as delusion.

Someone I know recently challenged me when I asserted that people could oppress themselves, and said he believed that oppression required someone outside the person doing the oppressing.  I didn’t agree, but in explaining my disagreement, I came up with some thoughts relevant to psychosis which I decided to share here.

One thing that my colleague had also suggested was that the oppressiveness of our current mental health system could be relieved by switching to a peer run system.  While I think peer run systems have some advantages, most notably that they usually at least believe in listening to the people they are supposed to be helping, I don’t believe that this move alone would make the system completely non-oppressive.  We had a peer run agency in our county for a number of years, and it did some good things, but I knew a number of “peers” who found it oppressive and who wouldn’t go there, for various reasons.  The problems were often those one might call “political” – arguably, dysfunctional internal politics.  So peers being oppressive to other peers is also possible.

At one point in our discussion I pointed out that I see people as a “complex process emerging out of an interaction of subsystems, some of which can be oppressive to others or to the person as a whole.”  By this I meant that people have their own internal politics, their own organization, which can be oppressive in much the same way that the government of a country can be oppressive.

The notion that all personal oppression comes from outside the person seems to me as flawed as the notion someone might have that all oppression of nations comes from other nations.  True, there are forms of oppression where one nation oppresses another, such as in colonial domination, but nations are also commonly oppressed by their own governments.  And I think there is an interaction between oppression by another nation and the tendency to form an oppressive self-government:  nations that have had their autonomy damaged through domination by outsiders seem more likely to form autocratic governments.

I think this is mirrored in a tendency for people who have been dominated or abused by others to form rigid forms of “self government” and then to experience “revolutions” that create chaos.  The resulting mess we call “psychosis.”  I think psychosis has a lot more similarities with  revolution than it does with “illness.”  That’s why psychosis often feels good when it first starts:  like with revolutions, there is often the sense of lots of great new potential, with no sense of the enormous possible costs.  That’s also why psychosis is not infrequently “successful” and leaves the person with a better sense of self organization than before – as documented on the late Al Seibert’s website, successful schizophrenia.  Though the outcome can also be something like a “failed state” with armed groups terrorizing each other for decades:  this outcome is more likely when outside intervention is unhelpful, such as when outside forces try to prop up authoritarian systems that are themselves oppressive.

Unfortunately, most of our current mental health system does try to prop up forms of self organization within the patient that are inherently oppressive.  For example, consider the whole effort to “get rid of voices.”  There is nothing that authoritarian governments like to do more than to suppress dissenting voices.  Non-oppressive systems tend to listen to them, not necessarily listen in the sense of believe them or do what they say, but at least to hear them out and consider what of value they might have.  Our current mental health system tends to side with the factions within a person that want to control thinking and suppress disturbing voices, even if that results in widespread oppression within the person.  More progressive mental health approaches, such as Open Dialogue, or the Voice Dialogue approach advocated by many within the hearing voices movement, help the person develop a more democratic, less oppressive way of being organized where all voices can be heard.  (The Open Dialogue approach also supports this in the person’s social network as a whole.)

So what I think is most important in reforming the mental health system is that we work at making it non-oppressive at all levels.  It should be a system that does encourage all voices to be heard.  Of course, not all voices can get exactly what they want, but in a process where all voices can be heard, it is more likely that each voice, whether it is a person or a part of a person, will get what he, she, or “it” needs.

SAMHSA just came out with a new document called “SAMHSA’s Definition and Guiding Principles of Recovery – Answering the Call for Feedback.” 

While the document sounds very positive when read superficially, it seems to me it is still contaminated with the kind of thinking which actually makes it harder for people to achieve a full recovery.

The document rightfully recognizes and highlights “the importance of hope as the catalyst to the recovery process.”  But it then goes on to downplay the hope that anyone might fully recover and so no longer be defined in relationship to “their” mental disorder.

It does this by defining recovery as “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.”  While this sounds positive and all, it is important to note that they are defining recovery as a “process” and not a possible endpoint.

If one thinks about the common sense meaning of the term recovery, for example recovery from a cold, or from a broken bone, there is both a process of recovery, and an end state of being recovered.  During the process of recovery one can still be defined as having the cold or the broken bone, though it is less pronounced as the recovery process proceeds:  then at the end of the process, one is recovered, and the cold or broken bone is history.

I think SAMHSA’s definition deliberately downplays the possibility, or hope, that people can achieve that kind of recovery in regard to mental disorders.  In doing this, they are lining up with a defective mental health system that has long been criticized for lacking exits – for example, there is a DSM criteria for being diagnosed with bipolar, schizophrenia, etc., but no criteria for being diagnosed as having recovered, and people are routinely discouraged from even thinking along those lines.  SAMHSA’s current definition offers hope that one can enter a process of recovery, but no hope at all that one can finish the process and eventually be as or more healthy mentally than before one was diagnosed, or as or more healthy mentally than other individuals who were never diagnosed.

I also dislike the aspect of the definition where they say that recovery is the process in which individuals “live a self-directed life, and strive to reach their full potential.”   I think we humans generally attempt to live a self directed life, and strive to reach our full potential.  This stuff is not unique to “recovery.”  By reframing this normal human striving as part of the process of recovery, SAMHSA is creating the expectation that an individual will always have to strive against the “mental disorder” to reach his or her full potential, and this reduces hope that the person can ever come to not be defined by the disorder.

A person who is recovered on the other hand will still have to strive to meet his or her full potential, but that will just be the striving that we all have to do, it isn’t defined in terms of the “disorder” that one once seemed to have, and it is a process of life, not of recovery from a disorder.

SAMHSA goes on to say that “Recovery pathways are highly personalized.  They may include professional clinical treatment; use of medications; support from families and in schools; faith-based approaches; peer support; and other approaches.”  This is all true as far as the recovery process goes – people do recover in many different ways – but if SAMHSA had been willing to discuss the end point of recovery, it might have had to look at how completing recovery would have to include getting to a place of no longer needing treatment.  After all, one doesn’t need cold medication when one has finished recovery from the cold, or a cast when one has recovered from a broken bone.  If SAMHSA had opened up a discussion about how the mental health system should work toward complete recovery, instead of just getting people engaged in the process of recovery and then stuck forever in that process, it then would have been forced to address the topic of how to help people get to a point where they don’t need treatments like medications, how to get off medications, etc.  And this is apparently too controversial for SAMHSA to take on.

Finally, while SAMHSA does mention the need to address trauma in the recovery process, it fails to address the possibility that trauma may have played a causal role in creating the “disorder” that the person experienced, and the importance of recognizing that fact in recovery.  The document merely states that trauma can be a “precursor” to the disorder, as though it just happened to go along with it.  Apparently SAMHSA is still bowing to those who want to see mental disorders as strictly biological, and would be too threatened by any recognition that trauma can cause the experiences and behaviors that get diagnosed by the DSM.

SAMHSA is certainly more progressive than many other agencies, but at the same time, it is way behind where it should be.  I look forward to the day when SAMHSA can help the mental health system orient itself toward recognizing that people’s “mental disorders” often have their origins in what happens to them, and toward helping people fully recover to a point where they don’t need treatment and they don’t need to define themselves as being in a process of recovery, but instead just in a process of living.