Open Dialogue: Does the Current Research Data Support Further Investment?

Sandra Steingard, MD
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2288

Psychiatric Services, a leading US journal, has published two important papers on Open Dialogue. Freeman and colleagues did an extensive literature review and analysis of currently available research. Their paper is accompanied by a commentary by Kim Mueser, PhD, Director of the Boston University Center for Psychiatric Rehabilitation and one of the world’s experts in his field.

Freeman and colleagues begin their paper with a detailed explanation of the criteria for inclusion into their investigation. They identified 23 studies for review. Papers selected were published in English and evaluated Open Dialogue effectiveness using either case study, qualitative, quantitative, or mixed methods. Studies were conducted in Finland, Norway, Sweden, and the US.

As the authors point out, most of the available research comes from the Western Lapland group that developed Open Dialogue (OD). This poses a fundamental source of weakness in the evidence base. Their studies had small sample sizes, there was no control group, and the ratings were not blinded. In addition, there were not consistent methods for either defining or evaluating OD.

Many of us learned of Open Dialogue because of their reported excellent outcomes for individuals who experienced a first episode of psychosis. We are eager to see if these results can be replicated elsewhere. But there are other important questions. OD is a way of working with individuals and their social networks but it is also a way of structuring a mental health system. There is inadequate information regarding successful implementation outside of Western Lapland.

The authors attempted to address these various questions in the paper and identified the following topics for review: treatment outcomes for OD, qualitative studies of the delivery of OD, implementation of OD principles, key principles and their application in network meetings, and service user acceptability and increasing trust in services.

The studies completed in Western Lapland comprise the bulk of the quantitative data. The authors have provided an online supplement with details of these studies; this is extremely valuable given their foundational importance for students of Open Dialogue. In the main paper, they summarize the three main cohorts who were studied and point out some challenges to uncritically accepting their conclusions regarding outcome: the sample sizes are small, there appear to be different sample sizes in different papers reporting on the same cohort, there appear to be variations in severity of symptoms among each cohort, and there is a sparsity of information on adherence to fidelity criteria for each cohort.

The qualitative studies have their own limitations including small sample sizes and lack of transparency with regard to sampling. This is critical since it introduces a major source of bias; if those who have favorable experiences are more likely to be included in the study, this would provide overly optimistic conclusions.

There were also large differences among the studies with respect to how they reported on implementation, making it difficult to use these studies to guide future implementation. Two studies of higher quality reported on some of the challenges faced by those implementing OD and the authors mention in particular the trouble some experience when questioning professional hierarchies.

In some studies, the focus was on the network meetings and not on systemic change. These offer some insights regarding which aspects seem to be correlated with optimal outcome.

With regard to service user acceptability, they point out that the qualitative studies report that this approach seems to be acceptable to service users who, along with families and clinicians, appreciate the style and transparency of the meetings.

Their conclusion emphasizes the limitations of existing research and points out several areas that require further investigation. This includes the need for studies conducted in the “real world” to evaluate OD’s effectiveness. They suggest further inquiry into not only if but also how and why OD is effective. They point out the need for further research on implementation and “scalability.” Along with this — and this is critical in tightly budgeted publicly funded systems — is the need for an assessment of cost effectiveness. Furthermore, they point out the need for a better understanding of the structural changes that are required to fully implement this model.

This is a valuable and important paper. Its conclusions should not come as a surprise to any student of Open Dialogue but one cannot understate the effort required and the significance of this type of scholarly endeavor. Its publication in a major journal reflects the fact that many outside of the OD world are paying attention to this work. The authors argue that the promising outcomes from Finland need to be replicated and, given the challenges at both a systemic and individual level (training is time intensive, for example), this is a daunting task.

Therefore, perhaps it should also come as no surprise that Mueser’s commentary, while essentially agreeing with the limitations articulated in the original paper, concludes that perhaps the task ahead is too daunting. His commentary concludes with these sobering words, “The present data on Open Dialogue are insufficient to warrant calls for further research on the program other than those projects that are currently under way.”

On first reading, I was frustrated. Dr. Mueser is influential and this seemed to create a catch-22: the current evidence base is not strong enough to form definitive conclusions on efficacy so therefore we need more research. However, since the evidence is not robust, we should not put any more resources into studying OD.

But to some extent, I understand his point even if I do not agree. As I was reflecting on this, I was amazed to realize that I have been a student of Open Dialogue for almost seven years. Along with some local colleagues, I was privileged to study at the Institute for Dialogic Practice. We have gone on to develop an adaptation within Vermont’s public sector that we call Collaborative Network Approach. We are currently in our third year of training. About 25 students have been enrolled in each of our first three years and most of them have gone on to complete two years of training. We have a smaller cohort who are training to be trainers so we can carry this forward and sustain our efforts. We want to keep this cost effective with inherent sustainability. This is critical in a system tight on resources with a constantly churning work force.

But as grateful as I am, there are challenges. Implementation is daunting. The people in my agency who attend training almost invariably return to work with a deep enthusiasm to carry this forward. I am a leader in this initiative and a leader at my agency so I feel the pressure of their expectations but I find myself in the awkward position of sometimes having to remind them that we do not yet know if this is helpful, how it is helpful, or how we can implement this system of care. And there are competing demands. There are other initiatives that show promise. And there is the daily grind — the daily urgent needs that arise and require our attention. Forgive the analogy (my daughter insisted I see Titanic about 50 times when she was young) but even when the iceberg is straight ahead, it is hard to shift course. I wonder if it is responsible to cry out for the need to shift in this particular direction before we have more data.

However, I share my colleagues’ enthusiasm and I join them in wanting to move ahead. In some ways, implementation can be simple. There are small steps. This way of working has helped me to embody principles that are not actually too controversial. This is “person-centered” to its core. It instantiates shared decision making. It is not hard to invite people to bring in their families or other important allies to the visits. While I hope this also isn’t controversial, Open Dialogue invites me to stay humble and to respect everyone’s voice. It doesn’t require me to disavow my expertise but to try to just bring it down a notch (or two, or many) and I continue to believe this is a good thing for my profession. And it is all about engagement. There are too many people — and often their families — who are struggling but who walk out the door because they do not like our message. OD offers a way to meet them without insisting they agree with our way of understanding the problem. I participated in the NIMH-funded RAISE early treatment study of  individuals who experienced first episode psychosis. Engagement was everything and, at least in my experience, the road to engagement was not directly addressed in the RAISE protocol. OD offers a path that I did not find in RAISE. And in any event, everything embodied in RAISE can be brought into OD. OD is the hub; CBT, supported employment/education, can be introduced. Medications can be offered. Even traditional psychoeducation can be invited in; it just isn’t given the full weight of epistemic authority that it is given in more traditional systems.

But I am left wondering about Dr. Mueser’s final sentence. I understand that in the long run, it could take enormous resources to move this along, but, thus far, very little has been given to this effort. While there is broad international interest, it doesn’t run deep in the context of worldwide resources. Most of the funding in the US has come through the Foundation for Excellence in Mental Health Care (disclosure: I am the chair of its board). FEMHC is in the process of offering another grant to fund an international research project. While I am proud of what the previous and current grantees have accomplished, these are beginning efforts. Perhaps, Dr. Mueser has in mind the dilemma that psychosocial research in general is underfunded.

I hope, however, that others will listen to the broad array of voices — clinicians, consumers, family members — who find something of value here. Yes, there is more work to be done, more to be learned,  but less us try to move this forward.

157 COMMENTS

  1. The results attained in Finland are still a beacon of hope for those of us looking for some kind of exception to the dismal record of business as usual in the “mental health” field. Dr. Mueser’s conclusion is cynical. Too cynical. Were the issue scientific investigation, and were we to conclude that because of the steep price involved there should be no more experimentation, science would stagnate. Implementation, with all sorts of dilution taking place, has to be part of the problem, but it’s written into the equation. I can only agree in so far as difficulties and challenges exist, however it would surely be a mistake to conceal the potential good under the negative shadow of this sort of temperamental belt tightening. How do you gather data without doing research? You don’t. I would suggest, on the other hand, that the status quo isn’t everything, and, therefore, a certain amount of spending on experimentation is justified for it’s own sake alone. Not giving a little to OD, or any other new and different approach, is surely a way of not giving, and I’d think we could do better than that. You can’t make gains without research, the present dismal record in treatment outcomes alone is all the justification we need for investing in further research, even if that research is into the potential expansion of OD type practices.

  2. Hi Sandra,
    I would love to see more of OD available. It’s hard trying to shepherd my wife’s healing from d.i.d. along on my own and try to hold her, me and our adult son together as a family simultaneously with no one to help me. I would have loved the chance to collaborate with her counselor and have some support for myself as well.
    I wish you well.
    Sam

  3. I get the sense that if this was a brand new, shiny, ridiculously expen$ive pill coming out of Western Lapland with comparable results, the reactions would be entirely different. Warm, possibly (probably?) glowing, even. A novel compound, out of Western Lapland…we must do what we can to win FDA approval, bring it to the suffering masses here in the US of A, etc. But…

    this is about psychosocial treatments…talking, compassion, empathy, people, connections, human needs and human growth and human suffering, defined and measured as best the researchers could do, with what resources they had available to them. And so…

    DENIED! Better luck next time, hippies.

    I suppose this is to be expected?

      • In a non-dystopian world this would not be considered a “technique” but part of being human. Not much “research” needed when people’s misery isn’t mystified. You’re also right about the $$$, not even real medicine is interested in curing anything, what’s the point if that means no further need for pharmaceuticals?

        • It’s possible that Western medicine doesn’t have the capacity to “cure” anything because we aren’t there yet. Human suffering isn’t easily curable after all. We are usually treating symptoms because we can’t identify the root cause of the problem and treat it directly. We still have a lot to learn about the human body and brain.

          • The first thing we have to learn about “mental health” is that you can’t and don’t need to “cure” an emotional reaction to circumstances. An emotional reaction doesn’t need to be cured, it needs to be understood through communication. Doctors need to realize that they can’t treat the mind as if it were an organ of the body. It is a lot more than that.

          • I think that we do know what is causing a lot if not most of human suffering. It’s the problems in our social fabric where the rich are getting even richer and the poor and the middle class and drowning. It’s the problems with our dear government; just look at what’s not been happening for the last 27 days, to the detriment of 800,000 people and their family members. It’s the not caring and the go to hell attitudes that are so apparent from so many people from so many sides. It’s the misery of those who live on the streets or in their cars, the misery of school children who come to school hungry. It’s the racism and bigotry and hatred of those not like me that’s on the rise in a nation that thought it had put all of this behind it. It’s the old who sit in their rundown apartments without food or heat. Or, it’s the old who’ve been shuttled off to live in not so wonderful nursing homes. I think we do know what causes the suffering and we don’t do a whole lot about any of it. It’s the suffering of all the children in this country who must struggle to survive the sexual abuse perpetrated on them by those who are the very people who should be protecting them from such abuse. I think we know very well what is causing the suffering.

          • shaun f

            With your above comment you just minimized the whole oppressive nature of today’s Medical Model and let it ALL its leaders totally off the hook for their crimes and criminal negligence

            Is it REALLY that “we aren’t there yet” ???

            And your use of the word “WE,” totally obscures the class nature of our society, and lumps all the victims of the Medical Model in with the perpetrators of the Psychiatric/Pharmaceutical/Industrial/Complex.

            Are “WE” here at MIA and other common people in society in this “together” with the leaders of the APA, Big Pharma, and the FDA???

            Until society reaches a point (beyond a profit based system) where top CEO’s can be duly punished with penalties commensurate with their crimes, we have NO chance of dismantling this oppressive Medical Model.

            Richard

          • Stephen, I agree with your analysis. Our current system does not support the needs of all of its individuals. We have an inept system.

            Steve, I would slightly disagree. I think with severe, distressing symptoms, a cure of sorts is necessary to alleviate suffering. Severe mania, for instance, can be life threatening. We don’t understand all the mechanisms of the brain, as it’s the most complicated organ in the body. It drives all human behavior and emotions. The problem is that the medical model is throwing darts without really knowing what they are doing to people in the long run (they should have a good idea by now, but people do respond differently to “treatment”). This is the travesty to me. We shouldn’t experiment on people. That is inhumane. It’s amazing to me how many people, however, willingly/wantingly participate. I strongly suggest to people all the time to reconsider getting on pills, but they say to me that they are wanting any chance to feel better and are willing to take the risks.

            Richard, my point is that we simply don’t know what is going on with the brain, so we can’t cure the distress that people are coming into MH clinics want treated. Medicine can rarely cure anything. It does treat symptoms, like cancer, pretty well, but it hasn’t been able to cure cancer, diabetes, or hearing voices. By the way, regarding voices, most people I talk with who are voice hearers would much rather have this symptom eliminated, or cured. They don’t love hearing, “You should kill yourself”, “You are a loser”, etc. It’s upsetting.

          • You seem to be operating on the reductionistic assumption that mental distress is “driven by” something wrong with the brain. I don’t agree. There is, at this point, no evidence to suggest that malfunctioning brains create any “mental illness.” Even if you choose not to believe in the possibility of non-material entities, the evidence to date strongly suggests that there is a process (or a SOMETHING) we call “mind” that transcends the mere interaction of cells, just as a computer program transcends the diodes and transistors and capacitors in the processing unit. It is clear from research on Buddhist monks, for instance, that directing the mind to do certain activities changes the actual STRUCTURE of the brain.

            It seems you go back and forth between the idea that caring for people and creating safe spaces is paramount to hoping that studying the brain will somehow provide some answer that transcends the human needs and priorities that occupy our attention as human beings.

            I don’t think you can have it both ways. The brain is certainly a participant in all human interaction, but so is the heart and the spleen and the liver. Participation is not the same as causation. In my view, the problem with the “medical model” is not the complexity of the brain, but the effort to seek a generalized solution for problems of the mind by trying to study and manipulate the body. We can see from the results to date that this approach is doomed to failure, and further study of the brain is highly unlikely to lead to anything but further confusion.

          • Shuan, what if the mania was CAUSED by the drugs?

            I didn’t enjoy that at all. Dr. M told my mom Anafranil never had that effect on anyone. It terrified me, but all he did was threaten us and say, “Don’t you dare go off your medication.” 21 days of no sleep stinks.

            Psychiatry creates more problems than it solves from what I see.

            I turned to a deliverance minister to drive my voices away. It worked. The drugs just amplified them. The preacher treated me more respectfully than any shrink I’ve met. And he spent 8 hours working with me–for free.

            Of course a deliverance wouldn’t work for agnostics or members of other religions. But psychiatry claims to cure everyone–even though it often makes folks worse. Especially long term.

          • Richard — not that I disagree, but I think “we” also need to be careful about how the term “prison industrial complex” is often appropriated and tacked on to other concerns. “Prison Industrial Complex” is a term that has long been used by the prison movement, and as most prisoners are Black, at least proportionally speaking, I am very wary of a bunch of “middle class” white people appropriating (or misappropriating) the term for their own pet causes.

            I believe that it would be legitimate and consistent with the understanding of what “Prison Industrial Complex” actually means for us to adopt the term “Prison/Psychiatric Industrial Complex,” which consolidates the two forms of repression without making it sound competitive between “our” movement and “their” movement, because if it’s not all the same movement something is essentially wrong.

          • shaun f

            Your response did not really address my criticism of your past comment about obscuring class distinctions in the realm of criminal responsibility.

            And then your response states: “Richard, my point is that we simply don’t know what is going on with the brain, so we can’t cure the distress that people are coming into MH clinics want treated.”

            Do we really have to know exactly what is going on in the brain of a highly emotionally distressed person? No, we don’t. We have to find the best ways to provide loving support, and help them understand the source of their distress and oppression.

            And furthermore, I would say that we don’t have to “cure” SHIT!

            Shaun f, your language implies that somehow there is some “disease” process going on here. Your “agnosticism” and “minimizing” language obscures the fact that we DO KNOW what some of the main problems are for why people suffer extreme duress.

            Have you forgotten that we live in a society filled with injustice, trauma, discrimination, and multiple forms of violence, including poverty?

            Shaun f, you seem to be trying to travel down the middle of a road as narrow as a razor blade. This approach leads us away from finding a deeper understanding and the ultimate solutions to these problems.

            Richard

          • my point is that we simply don’t know what is going on with the brain, so we can’t cure the distress that people are coming into MH clinics want treated

            Sliding backwards again I see, this is getting predictable. With this statement you just aligned yourself with those who consider misery and oppression symptoms of brain diseases.

          • Steve,

            Can you say you know what is going on in the brain when someone is experiencing distressing voices or can’t sleep for days on end? Or dementia? The simple answer is no. My own theory is that the structure of the brain is damaged or altered when individuals experience trauma. Also, clearly genes play a large role.

            Do I think that pills will likely ever cure the symptoms mentioned in the DSM? No. What will likely lead to lasting healing is when we provide support and care for everyone, make sure their basic needs are met, help people heal through creating meaning and purpose in their lives, and so on. Chronic poverty is one top reasons people suffer with various symptoms; however, for some people they just can’t shut off their symptoms, even after they have attained all the things I’ve mentioned. We simply don’t have all the answers. So I think anyone who says definitively that “Mental illness doesn’t exist” is just as wrong as those who say there is a chemical imbalance in the brain which leads to symptoms. We don’t have enough information one way or another yet (although many on this site would disagree). What we do know is that people suffer from a variety of states and they seek answers and solutions from so-called experts who too often create more harm than good.

          • Rachel,

            You bring up a good point. The system can induce symptoms in people, which is why drug treatment is like throwing darts and can be very dangerous. Iatrogenic consequences are all too common because we don’t really understand how individuals will respond to various pills.

            There are many people who come to my clinic, however, who experienced manic states prior to ever getting on any pills.

            I don’t hear any of our doctors saying that their pills “cure” anyone. They are quit open to the fact they are trying to treat the symptoms and not the root cause of anything. There are no cures provided in psychiatry or most other forms of Western medicine, unfortunately.

          • Richard,

            I don’t really disagree with anything you are saying. I think there are many causes of human suffering. I can tell you, however, that we do know brain development is directly linked to early childhood experiences. We know that if an infant is locked in a dark room for a period of time they will lose the ability to see. We know that if children aren’t provided a reliable and supportive home environment, that they will likely struggle with boundary setting and relationships, as well as a host of other issues. We know that children disassociate when they are regularly exposed to trauma, and frequently these people as adults will involuntarily disassociate. I could go on and on. The point is that the brain (e.g., self-esteem, self-image, decision making, problem solving) is damaged in some people, to no fault of their own, and they do want some form of resolution/healing. I would venture to say that the brain does need healing under such circumstances.

            For those who say other organs are involved, I would point out that none of our other organs are designed to think or feel. They are there for a specific purpose, like clearing out toxins or moving blood around our bodies.

            “Have you forgotten that we live in a society filled with injustice, trauma, discrimination, and multiple forms of violence, including poverty?”

            Our brains no doubt are damaged by these social and human problems.

          • Your points regarding brain development are well taken. However, you’re still not dealing with the question of what the mind is. We know that actions of the mind can not only “reprogram” the brain (to use an idiotically oversimplistic metaphor), they can actually cause the structure of the brain to change. It can alter the expression of DNA. So what is this “mind” that can fix up the brain itself? Is the mind more than the brain? And if so, should we not engage the mind in overcoming unfortunate developmental results of early neglect or abuse?

            I’d also add that we know that 90% of serotonin receptors are in the gut region, and that there are some who theorize that some level of “thinking” is moderated by the gut. People don’t say they have a “gut feeling” about something for no reason – they really do appear to judge things with their guts!

          • So I think anyone who says definitively that “Mental illness doesn’t exist” is just as wrong as those who say there is a chemical imbalance in the brain which leads to symptoms.

            You really really really don’t get this do you? A linguist can explain to you why it is IMPOSSIBLE for “mental illness” to exist, it’s not even a medical issue.

            So in short, your above assertion is about as wrong as something can be while remaining within the parameters of simply being wrong, rather than something more exponentially wrong than wrong.

          • Oldhead,

            We all have opinions. Millions of people believe that “mental illness” is a legitimate concept. I don’t care what a linguist has to say about the brain. I am more interested in what science has to say on the subject.

          • Millions of people believe a lot of stuff that isn’t true. What is the scientific underpinning of any “mental illness” you can name? How is a person objectively determined to “have” vs. “not have” a particular “disorder?” And even if such “disorders” could be objectively identified (which they can’t), what evidence is there that all people with the same “disorder” have the same thing wrong with them or need the same kind of help?

            The DSM itself proves that neither of the above conditions can be met. It admits in the introduction that there is no line between having one disorder or another or no disorder at all. It also states that there is “no assumption that people with the same disorder are alike in all important ways.” In other words, they admit that these “diagnoses” are actually heterogeneous groups of people who may have little to nothing in common with each other. What on earth is the use of a “diagnosis” that labels people arbitrarily into groups where the people don’t even share common characteristics? It makes about as much sense as saying someone whose knee hurts has “knee pain disorder” which causes his knee to hurt.

            If you claim to believe in science, you ought to think carefully about how these “diagnoses” are arrived at. There is very little science involved, actually.

          • Steve,

            All information ultimately goes back to the brain to be processed. Our CNS connects to nerves, and the spine, which all lead back to to the brain.

            The distinction between the mind and brain seems arbitrary and can’t be distinguished by science (yet, anyway).

            As far as I can tell therapy is focused on helping the brain to learn new things, process trauma memories, develop new neural connections, and so forth. When people learn over time that they do have some control I think it changes the brain. But I have no way of verifying this. Like I said earlier, we have a long way to go to understand what is going on in the human brain when change (or trauma) does occur. And why some people are seemingly more resilient than others. So many questions and few answers.

          • So in other words, yes, you do think the mind and the brain are the same.

            The fact that all information goes back to the brain to be processed proves nothing. The fact that science can’t distinguish between “mind” and “brain” simply means that science has no idea what “mind” is and is incapable of speaking intelligently on the topic.

            MIND, to me, is that part of us that has intentions, valued, priorities, goals, scruples, etc. It demonstrates such qualities as courage, anticipation, regret, integrity, faith, etc. As long as none of these qualities and qualities like them aren’t definable in terms of the brain, then science can not claim the brain is the same as the mind.

            For materialists (like you, I guess), there is no possibility of anything existing beyond the physical. This forces them into a position where they can have no clue what “mind” is, and yet be completely certain it must be part of the brain, “Because where else could it be?” But again, that’s a matter for philosophical discussion, not scientific.

            Science is supposed to be skeptical. This means that if something is not shown by data to be true, it is simply unknown. It can’t be assumed to be true, in fact, any such hypothesis would need to be thoroughly tested and all alternative possible explanations eliminated before we could conclude this is the case. Obviously, nothing remotely close to this has ever been accomplished, or as far as I know even attempted. The fact is, the mind is a MYSTERY to science. It can’t even be defined, let alone located in the brain. (Let me know when you find where “courage” or “integrity” are located in a brain.) Just because you or others are materialists doesn’t mean materialism is “right” or “true.”

          • No CURE s the wrong word. But save lives/make you a great marriage partner/enjoy a career/and become a kind, caring, morally upright person. All by taking their magical pills.

            They did the exact opposite for me. Have all the symptoms of Chronic Fatigue and live in poverty and isolation. I’m alive, but it’s not a good life. I owe it all to those lying monsters who drove me crazy, then sold me cocktails till I broke away. Too sick and old for it to help.

            I wouldn’t need HUD or other hand outs if I hadn’t been crippled by those remorseless, cold-blooded drug dealers who pose as doctors. Never wanted to be a welfare case. Everyone in the MI System thinks living on subsistence hand outs is great. NO IT’S NOT!!!

            Living in a garage now. No water or toilet. Keeping (somewhat) warm with a heater. Ugh!

            I owe it all to psychiatry! 😛

          • What if a scientist uses a word that doesn’t mean anything? Like “mental illness.” If it’s a brain disease that would make it a PHYSICAL illness. In which case–there are already brain specialists. Neurologists. Psychiatrist means “soul doctor.” Pretty ironic.

            Words matter.

          • Rachel,

            It totally sucks to be victimized by “medicine”. It’s unacceptable that thousands are harmed by doctors ever year in the name of “helping”. This is also why I want to stay as far away from hospitals as possible, since there are 100,000 deaths a year due to mistakes by doctors and nurses. And nearly everyone is better off not being on pills.

            I would agree with you that studying the brain should be left up to neurology and not psychiatry, because clearly the latter isn’t doing much when it comes to brain scans and the like. They treat symptoms and that’s about it.

          • Steve,

            Your definition of the mind are basically boiled down to the choices we make, like being courageous, and feelings, like regret. All of these experiences/thoughts/beliefs/feelings can be tied to various parts of the brain which we do understand to some degree. Again, your distinction between the brain and mind seems completely arbitrary and lacking any real differentiation.

            I do believe in science, which is why I’m more and more skeptical of psychiatry which lacks hard data. Psychiatry is about treating symptoms with pills which they have no way of knowing are helping or hurting anyone, and certainly know that they aren’t treating the root cause (usually, trauma, or some form of brain trauma like a TBI).

            Regarding the DSM, I have said repeatedly that we’d be better off burning the document and not using it. It is arbitrary in it’s distinguishing various “disorders” without ever having to prove that they actually exist (within the person). I hate having to use the DSM, and look forward to the day in the future where we don’t have to label people in order to support them.

            The concept of “mental illness” has been around for thousands of years, long before people where shoved full of pills. Clearly, people do experience distressing states, some of which never improve (with and without any form of help), and we can call it “mental illness” or “distressed states” but basically we are talking about the same experience/problem, e.g., hearing distressing command hallucinations. We can focus on semantics all we want but it doesn’t change that fact that millions of people around the world experience various distressing symptoms that they desperately want relief from.

          • The question is not whether distressed states exist. No one disputes that. The question is whether these states can be explained and understood by studying the organ of the brain. I suggest that they can not.

            Of course you can see no distinction, because it violates your basic beliefs. I do assert that the mind boils down to the decisions we make, but more importantly, WHY we decide to make the decisions we do. And I defy you to show where values and principles and priorities are stored in the brain. We don’t even have a clue how memories are stored. You can’t tell me where to find values.

            Perhaps a clearer way to put it is that the brain is kind of like the computer processor. It doesn’t work without a program, which you can NEVER understand just by studying the circuits. But more importantly, the computer requires an OPERATOR. To me, the mind is the operator of the brain. We may one day find the operator within the brain’s structures, but as of now, no one can say where the operator is or how it works. A true scientist would have to admit that this is the case.

          • Steve,

            I guess we can agree to disagree. You are a dualist and I’m a materialist.Also, the brain is much more complicated than a computer processor (which humans created).

            A true scientist would say we should study what we can study. In other words, we should study the brain to better understand how it works.

          • I’m not arguing against studying the brain, Shaun. I’m arguing against the idea that you can assume that the brain and the mind are identical, and that studying the brain will yield an understanding of the mind. And I reiterate: the results to date suggest strongly that we are barking up the wrong tree, and in fact probably in the wrong forest. Studying the brain gives information about the brain, which may be very useful information. But so far, the study of the brain seems to have created nothing but confusion about what the mind even is, while studies like Buddhism, which look at the mind as a separate entity, seem to have let to much more satisfying results.

        • Shaun F,
          now you’re talking my language, but I’m not sure I would say one’s dissociated brain/mind is ‘damaged’ unless you qualify it to mean fundamentally a different kind of damage than what the biochemical people mean.

          If you want to assert that the ‘damage’ is similar as when one breaks one’s leg or other part of the body, then I think the analogy can be useful as I just used that analogy on another thread on MIA to try to explain how dissociation works in ‘psychosis’.

          Dissociation does ‘damage’ the brain/mind in that just like a broken bone, we will stop using that appendage until it is healed. And just like broken bones that don’t heal, then other parts of the body are stressed because they try to take over for the part that isn’t healed, and so there becomes stress throughout the system and everything begins to break down some especially if the environment is hostile.

          In a similar manner, when trauma, that is not healed and assimilated into one’s narrative, causes dissociation, the brain/mind begins to do ‘work-arounds’ in the neural pathways that it must take to maintain general functioning, but it also begins to lose access to traits and abilities where the dissociated memories are stored (I mentioned that to you personally in another thread but can’t remember where right now).

          But thanks to what we know about neural plasticity, that damage is NOT permanent. Heal the trauma, and then, with help, the dissociation can start to be dismantled, but it’s a lot more work than those in ISSTD understand since they never get full access to the person’s system like a primary attachment figure/SO can have if s/he works to have it. Two of my wife’s littles helped me understand the key to undoing the dissociation when we began to redraw their inner working model (attachment theory).

          So like you, I do believe in ‘damage’ if one qualifies it and differentiates it from the unchangeable, organic damage that the biochemical model espouses. And we shouldn’t get hung up on my wife’s ‘extreme’ dissociation. We all fall on that spectrum somewhere and learning to help her taught me how to deal with my own: my issues just weren’t as complicated.
          Sam

          • Well said, Sam. A point of clarification. Disassociation is a normal reaction to unhealthy and scary events. The problem arises, like with nearly all coping reactions, is that the helpful reaction becomes burdensome and gets in the way of living a full life. Disassociation keeps someone mentally protected when experiencing harm. But in adulthood that same person who continues to subconsciously disassociate will not feel so protected from this defense mechanism that was helpful in childhood. Substance use is another example. Initially, people often find illegal drugs and alcohol to be a relief, but in the long-term, they usually experience bad consequences to their health, finances, and relationships.

            Dissassociation isn’t the real damage to the brain…it is trauma and will always be trauma. The interesting thing is that we all react differently to trauma.

          • Dissassociation isn’t the real damage to the brain…it is trauma and will always be trauma. The interesting thing is that we all react differently to trauma.

            Hi Shaun F.
            I do understand why you would feel that way. In the d.i.d. world, most people do everything they possibly can to avoid dissociating. They treat it like the plague and as a result only 6% of the cases are ‘florid’ where you could actually meet the individual alters. So most of the common and expert literature view things like you do and don’t really understand that the trauma and the resultant dissociation have VERY different roles and effects upon a person’s brain/mind.

            But my wife and I have welcomed and lived in ‘the dissociation’ for the last 11 years. We’ve embraced it, and it helped me see that the two really are different and cause different issues even though the trauma causes the dissociation initially.

            The dissociation is far more destructive and difficult to undo than the original trauma and causes so many things that most people simply don’t understand because they never get to see it close up AND differentiated from the trauma. I realize I can’t possibly relay all I’ve learned in the confines of the comment section here, but maybe some day I’ll have the chance to do it more publicly.
            Sam

  4. I had just finished Kim Mueser’s article when I saw your response. I too was very disappointed by the last comment and was glad to see your article. In fact, I have been disappointed by the lack of “forward thinking” on the part of the Psychiatric Rehabilitation world. I attended the World Hearing Voices Congress at BU a few years ago. I really expected a PsyR presence (we were at BU and there seemed to be some sponsorship from the PsyR folks) and an embrace of the HV Network Approach and discussion about how practitioners can support this work. From what I saw, there was one person attending representing the Center for PsyR. I did speak to her, but there seemed to be very little interest in any kind of partnering. I thought this might be a discipline that could see their role as embracing some new and creative ways of supporting people. This is a discipline that has the opportunity to move away from the “disease” model and help people accomplish their life goals!

  5. One difficulty with OD is that many families (in the US) aren’t in (healthy) contact with people experiencing extreme states. In many cases the family is the cause of the distress in the first place. Lapland is a very small and homogeneous place, and I would also imagine that there is a greater sense of community and connection there than in places like the US. Clearly more research is needed. I think the OC perspective makes a lot of practical sense because it’s systemic and holistic.

    • you do make good points. social disintegration to the point of anomie is pretty much…right about where US culture is located, at this point in time. 🙁

      but should funding really be denied for at least –attempting– this sort of treatment? what’s the alternative? more and more $$$ for the standard drugs, then more and more $$$ for disability, and then $$$ for the Rx pills to fix the ills created by ‘standard treatment’ ? more $$$ for involuntary injections?

      I do see that there are some amazing new treatment$ for tardive dy$kine$ia out there now. The patient info packettes are hot off the presses. Is -that- where $$$ should go?

  6. I was in the first cohort of trainees in OD conducted by Mary Olson and Jaakko Seikkula. I have used it in my private practice for the last 6 years. I sometimes have a cotherapist or sometimes utilize a family member to reflect with, as I learned many years ago from Dr. Tom Andersen. I have found the approach very successful, and wrote up one of my family experiences in my book, “heartbeats of hope.” The OD approach is closest to a recovery-oriented practice as I have found. Its nonexpert, collaborative, person centered orientation, in which every voice is valued is what persons with lived experience have been advocating. I agree the task of retraining and shifting away from our brain-centic, individual-based perspective is daunting, but essential to try. In England, the NHS is testing OD in a carefully designed $2.6 million, multi year study. I think we should do the same. I also think we need an adaptation that engages more peers and at times can be practiced by peers themselves working in settings such as peer-run respites. I also have found that integrating OD with Emotional CPR is synergystic. I think a US adaptation could enhance OD by utilizing peers trained in eCPR to carry out initial engagement and then incorporate the peer into the team. Several years ago I accompanied a Finnish team working with a family. The parents were present, but not their son, the person of focus (as they call the person with a presenting issue). I participated in the meeting as a peer, revealing my own lived experience. The parents said that if there was a peer on the OD team their son would likely participate. In Poland, I also observed a family in which the person of focus only participated once a peer connected with him. I also find it very helpful to gives all family members assignments to read about eCPR between sessions. I realize there is a need in research to replicate original protocols but there is also a need for OD to evolve.

  7. For what they’re worth, these are my two cents’ worth on this report.

    This article is too long and technical for me to fathom. However, it disturbs me greatly to see that there’s ANY negative criticism of OD at all. For the past several years since I first learned what OD is, I’ve relied on it as a sort of beacon of hope to guide us out of the netherworld of the medical model. The medical model is a horrifying black hole which must be neutered at any cost.

  8. Tomi Bergström, Jaakko Seikkula et al. 2018 compare FEP Open dialogue patients with all FEP patients in Finland over 19 years. Open dialogue (OD) uses neuroleptics for 20% of patients in the beginning, standard treatment (CG control group) 70%. At the end 36% of OD patients use neuroleptics, for CG it is 81%. Disability allowance, readmission and patients under treatment halves with OD
    http://wkeim.bplaced.net/files/Bergstrom-2018.png
    https://www.sciencedirect.com/science/article/pii/S0165178117323338

          • I’m truly shocked that with all the hype we’ve been hearing for years, “Open Dialogue” is actually a drugging-based operation, just like all the others. Has this ever been mentioned before?

          • From my understanding, it is not drug-based, but does use drugs in a minority of cases. Mostly, it’s about talking and listening as a group. I had a training on it and drugs were never even mentioned. I think they would use them only if their standard intervention wasn’t taking hold, and for a short period of time in most cases. Not saying that doesn’t raise concerns, but the data I have read suggests that 80% come out without any drugs at all, and that’s a pretty big improvement over 85% ON drugs in “standard treatment.”

          • I think it’s because American MI specialists only see it as a supplement to their safe, effective poisons.

            Trust it to American medical bureaucrats to ruin a thing. 😛

          • Oldhead,
            Open Dialogue is a huge improvement from anything the system has to offer at the moment, except possibly EMDR. If one takes an all-or-nothing approach to life, life will be perpetually disappointing.

          • Open Dialogue is a huge improvement from anything the system has to offer at the moment

            Glad you agree that the system is useless. The government should defund it, don’t you think? Oh wait, the government IS the system.

  9. Recovery perspective

    Recovery is used in several meanings and has gained attention and has now become mainstream. WHO’s Mental Health Action Plan 2013-2020 is with emphasis on recovery. The Government’s Strategy for Good Mental Health (2017-2022) “Mastering Life” is based on WHO’s plan and The European Mental Health Action Plan 2013-2020 and. EU JOINT ACTION 2016. WHO project QualityRights initiative is improving quality, and promoting human rights. Both the United States, Canada, New Zealand, Australia, the UK and Ireland are building their national strategies on recovery.

    Bjornestad, Jone et al. 2017 found in “(E)xperiences of fully recovered service users”: “(b)etween 8.1 and 20% of service users with FEP achieve clinical recovery (Jaaskelainen et al. 2013)” with treatment as usual according to the standard guidelines. Recovery rates decreased: «17.7% in studies between 1941 and 1955, 16.9% in 1956–1975, 9.9% in 1976–1995, and 6.0% in studies after 1996 ( table1)» according to (Jaaskelainen et al. 2013).

    Erika Jääskeläinen et al 2005 rapports that in 2001 recovery rate was 3,4 % and 56% of patients an disability allowances in Northern Finland Birth Cohort 1966 , that is the same area before Open dialogue started up. Open dialogue reports more than 80% recovery (Seikkula et al. 2006) and the incidence of psychoses was reduced from 33 to 2 per 100,000 inhabitants per year (Jaakko Seikkula – 7 Principles of Open Dialogue – DK 3 – Roskilde- August 29, 2014).

    Both Freeman and Mueser fail to adress the recovery question, which is the goal defined in national strategies.

    It is important to ask the right question: Is a shift of paradigm necessary? Can Open dialogue achieve quadruple recovery rate, reduce schizophrenia per year to one tenth and disability allowance/sickness is reduced to one third?

    http://wkeim.bplaced.net/files/recovery-en.html

  10. Thank you Walter Keim. I would answer your question about is a paradigm shift needed with a resounding yes. A shift from power over to collaboration is essential to the recovery paradigm and that shift in emphasis is what OD means when it emphasizes that every voice counts. When Daniel Mackler in his documentary on OD asked the late Maarko Seutala, an OD developer, “What is the essence of OD?” Maarko thoughtfully said,” Democracy.” Sadly we are witnessing the daily loss of our democracy here in the US. To me this is a central reason that we in the US have difficulty importing OD. The recovery paradigm is based on the essential inalienable rights embodied in our constitution’s opening “we hold these truths to be self evident, that all men are created equal” to persons labeled mentally ill.

  11. I don’t think we can rely on professionals alone to bring much change to psychiatric systems.

    Psychiatry always was a way of controlling the mad so the money men could continue exploiting the populace. Only by the mad organizing and fighting back can we hope to influence psychiatry.

      • Steve,
        Very true. “Professionals”, including myself, are invested in continuing to get a paycheck, and most of us are afraid to rock the boat because we have bills to pay. We’ve spent years in college attaining graduate degrees and student loan debt and feel compelled to stay in jobs which are possibly doing significant harm. We tell ourselves that the harm which the system creates is small compared to all the good we do. The cognitive dissonance is very uncomfortable, particularly in fields which are supposed to be helping others. We don’t want to believe that our interventions are hurting people. We think we are good people doing good things in the world. Of course, metabolic syndrome, TD, stigma, forced hospitalization, and coercion don’t fit into that narrative of being “good, helpful” clinicians.

  12. I think social class issues are important, too. The US has always been far more punitive towards the poor (and therefore the disabled) than many other affluent, developed nations. Now, the middle class has been shredded. The psychiatrists are “haves” who essentially work for the “have everythings.” The bulk of the patients, meanwhile, are “have nots,” and are therefore treated with increasing levels of contempt and cruelty.

    Especially in the US, psychiatry -is- a human rights abuse (Szasz).

  13. Open Dialogue is more successful than other “treatments” because it addresses “mental illness” like it is a myth (a social problem with living). It is more successful when addressing emotional suffering within a community that has more empathy for emotional sufferers. It is less successful within the US because the larger community is more hostile, and the program is more “technical” (like it is addressing “mental illness” rather than a problem with living) and therefore more expensive.

  14. Another reason I believe for its success in Finland is that their society overall provides more social supports for those in need growing from greater social capital and greater sense of belonging to your community. It also helps that the area of Lapland where the best results are found is not under the sway of big Pharma or psychiatrists who are agents of big pharmaceutical companies who are invested in the chemical imbalance myth.

  15. How much TV do people watch in Finland? Seriously.

    I believe all the mindless, passive viewing leads to isolation even if you’re around someone most of the day.

    My retired mom–I’m forced to share a place due to poverty–screams at me for talking during the “important parts” of her show. All the parts are important and all the shows are her favorite. Has gotten irritated when Dad and I talked interrupting a skin cream commercial.

    She’s not depressed though. Just doesn’t give a rip about anything or anyone not on the blasted screen. Quit reading and has no hobbies.

    I stay in another room except for dinner. Even then Dad and I have to be quiet so she can hear the news. Has it on full blast though it’s making her deaf.

    • Preschoolers are taught how to safely wield an ax in Finland. I’m not sure there can be any direct and meaningful comparison of cultural values between the Fins and Americans.

      However, when it comes to TV, viewing habits in terms of average daily minutes the TV is on is highest in US but not by far.

      Here’s an article showing the US at the top of the list with most minutes watched. You can see many western countries watch almost as much. Finland is not on the graph in this article but the second link has its minute numbers for each year from 2007-2017, for your comparison.

      https://www.statista.com/statistics/276748/average-daily-tv-viewing-time-per-person-in-selected-countries/#0

      https://www.statista.com/statistics/276748/average-daily-tv-viewing-time-per-person-in-selected-countries/#0

    • You mentioned advertisements though and one thing to note is that US airwaves (both tv and radio) are heavily saturated with advertising and that tends to be much more strictly regulated throughout most of the rest of the world. The deregulation of the FCC in the 1990s has led to a kind of market based advertising scheme and created an environment where what we see and hear on tv and radio is heavily controlled by corporate advertising and sponsorship. So it’s much easier to manipulate the American public or prevent issues or news stories from ever being aired because an advertiser can just threaten to pull their dollars.

      One thing most of the rest of the world doesn’t see are pharmaceutical ads, for example. Is there any wonder that the chemical imbalance theory (and biomedical model in general) lives on when we the American public are constantly bombarded with extremely misleading advertising about medicines being effective to treat mental distress?

        • But they sure can market all kinds of drugs for supposed illnesses. Dry eye is now an illness according to the advertisements that want you to buy these drops for your eyes. I counted at least nine commercials for drugs in about an hour and a half. “Ask your doctor………..”

          Americans are like sheep when it comes to this stuff. We believe it simply because we see it on television. It’s amazing that people don’t seem to realize that they’re being manipulated by drug companies each and every day as they sit in front of their televisions.

          • Only this morning I saw an ad for a “medical study”. They are looking for people whose “antidepressant” isn’t working as well as it should and they want people to take part in a study for their new “antidepressant”. They want people to take their drug as a supplement to their original devil’s tic tacs because they’re sure that their drug will jumpstart the one people were on originally and make everything work better. Then everyone and everything will be just hunky dory wonderful. I’d love to see the numbers of people who beat down the doors to sign up!

  16. There used to be time and space for PSA’s and or space was bought bringing out alternative points of view. Yup
    Brynner did a spot while he was terminally ill against smoking saying it would air after his death which it did.
    There also were pieces in the men who did the Marlborough Man advertising. I think many died of lung cancer.
    At this time there empty space.
    I had forgotten about The Plug In Drug!
    Subliminal advertising is something I wonder about . Kurt Vonnegut worked in advertising and then wrote some seminal novels about all things strange.
    His son supposedly had an “ Mental Illbess” but did recover. I hope he is doing well.

  17. Sometime statements are so objectively ludicrous that it would be irresponsible to let them pass. This is from shaun f above:

    Millions of people believe that “mental illness” is a legitimate concept. I don’t care what a linguist has to say about the brain. I am more interested in what science has to say on the subject.

    And the answer is:

    a) Millions of people have been made fools of; it IS a shame.

    b) You misunderstood my statement regarding linguistics. A linguist is not an expert on the brain, nor is a physician an expert on metaphorical constructions such as “mental illness.” But a linguist CAN explain why metaphors are figures of speech, abstractions that can never exist in material reality.

    • Yeah, you think that only “fools” would believe in the concept of “mental illness”. A linguist could never say for certain that “mental illness” is not a maternal reality. We know where you stand, but that certainly isn’t the mainstream opinion.

          • Many actually CONSIDER it a physical illness but call it “mental” instead.

            Not trying to be rude, Shaun. 🙂 Just trying to clarify the point OH and I are making.

            My degree is in English. I’m a stickler for proper grammar and semantics. Words are important.

          • No worries, Rachel. Truthfully I think we should stop calling it an illness at all until we have more data to know that there is something deficient in the brain to call these experiences a “mental health disorder.” The actual hard science is lacking.

          • I don’t know why it isn’t considered a physical illness.

            Primarily because there is no “it,” nor could there be (is there a linguist in the house?); also because all psychic states have physiological correlates, as our consciousness is focused in a material framework. Not to mention no evidence whatever, even within a medically-based paradigm of misery or non-conformity.

            Sean still doesn’t understand that “mind” is abstract and “brain” is physical, and that the brain does not control the mind.

      • I don’t think only fools believe in “mental illness”, I think that most people believe what the experts tell them is true about things they don’t understand.

        The cultural conditioning that we are raised with – to respect authorities in their fields, and not to pontificate on things we have no expertise in – leads people to blindly trust institutional figures like doctors, priests, police, military, etc. And then our earned expertise as patients is disregarded as lacking insight, which is the biggest pile of gaslighting elephant dung in the room.

        Additionally, we live in a 24 hour news cycle where everything can be spun to fit a convenient narrative. Just change the channel if the one that’s playing doesn’t fit your personal beliefs and you too can have your beliefs confirmed by a newscaster or station with a monetary incentive to tell you what you want to hear.

        Lastly, our behemoth of a federal government protects industry and profits before the people that voted them into power. Money talks. And money corrupts. And of course, we can’t forget that corporations are people now with all of the absurdity that implies. We need to get the money not just out of politics, but out of all matters in the public interest.

        Until all of these conditions change, people will fall for believing in the validity of these labels and that doesn’t make them fools, stupid or guillible, it makes them a victim of the oppressive culture they were raised in where believing (and parroting) what you’re told is valued more highly than thinking critically.

    • And c) Science actually SUPPORTS the idea that “mental illnesses” are not physiological in nature, and in fact, don’t define homogeneous groups at all. I think Shaun is confusing the idea that no one SUFFERS from the idea that there is no scientific way to define the concept of “mental illness” in the sense of a physiological problem.

      • E. Fuller Torrey himself once compared the notion of a “sick mind” to that of a “purple idea,” i.e. two words which are incongruous, unless you’re writing poetry, or you’re Lewis Caroll.

        Even more threatening to the “materialist” is the thought that the mind controls the brain, not vice versa.

      • Steve,

        “I think Shaun is confusing the idea that no one SUFFERS from the idea that there is no scientific way to define the concept of “mental illness” in the sense of a physiological problem.”

        Can you rephrase what you just said? I don’t understand your point (particularly the first half of the sentence).

        • Not sure how else I can put it. Mental/emotional suffering does exist. That is not in dispute. The dispute is the idea that “mental illness” can be defined in scientifically precise terms. “Mental illness” is an analogy, a metaphor, a squishy-soft social construct that has no scientific definition at all. Even the former head of NIMH agrees with this. But it is a common argument in favor of the concept of “mental illness” to say that, “saying mental illness isn’t real means that you’re saying that mental suffering isn’t real.” It’s a false equivalence.

          • Steve,

            I have never said that mental illness, as defined by the DSM, can be scientifically delineated. We simply don’t know if distressed states, like hallucinations or mania, can be attributed to parts of the brain which have gone haywire. This is why you are right that the term “mental illness” is more a metaphor than a reality (that science has been able to prove, anyway). We cannot say with certainty, however, that “mental illness” doesn’t exist either.

            We do have enough data to know that the brain, like all organs, can develop various illnesses, such is the case with dementia, MS, Parkinson’s, Huntington’s, epilepsy, and ALS. . It stands to reason that the brain is vulnerable to various kinds of diseases (and foreign bodies, like tumors), which can and do impact human behavior, thought, and emotion. Someone who has suffered with depression their entire lives will tell you that it sure feels like a curse (e.g., disease) that they cannot shake.

          • Depression may “feel like a disease,” but that doesn’t make it a disease. I say this as a person who struggled with depression and anxiety for the first 30-40 years of my life, including times of feeling suicidal and seeing no point in life at all. I am GRATEFUL that no one ever “diagnosed” me with a “brain disease,” but instead people (including my therapist) encouraged me to believe that I could DO something about it, and helped me take small steps, one at a time, that led me to a place where I actually spent most of my day NOT feeling anxious or depressed, and where I knew what to DO if I felt that way to find my way quickly to a more effective approach to whatever was bothering me.

            Some approaches that helped: recognizing being over tired or having low blood sugar, learning to meditate, learning to emotionally process difficult experiences from my past in a safe place, spending time hiking and biking, finding meaningful work, listening to clients about their own experiences and seeing what they seemed to find helpful, challenging myself to confront injustice when I was scared of the outcome, raising some wonderful but at times incredibly difficult children, learning how to grow with my wonderful but at times incredibly difficult partner…

            ALL of these things and more have contributed to my learning how NOT to be depressed, and it took a couple of decades and a lot of support from a lot of people, some professionals but mostly just “regular people” who cared about me, or for whom I was responsible in some way or another. How could such a complex interaction of forces be considered a “disease?” Depression didn’t just HAPPEN to me – it was the result of many years of experiences and decisions and goals and accomplishments and failures and relationships. The body was certainly involved, and may perhaps have colored the way I reacted to things. But to reduce my feelings of depression to a random problem in my brain would be absurdly reductionistic and invalidative – it would take away the meaning of the work I’ve done and the things I’ve learned in the process.

            There may be a tiny percentage of depressed people who actually have something wrong with their bodies, and they certainly deserve medical help if it is available. But the vast majority of depressed people have a history of their own, very different than mine and yet in some ways very similar. Reducing their suffering and their emotional experiences to a malfunctioning brain is not only insulting, it is ultimately disempowering in that it denies that person’s ability to look at, sort out, and address whatever range of experiences lie underneath their emotions and behavior. If the indications of depression can be in any way viewed as “symptoms,” they can only be considered “symptoms” (aka clues) of the actual problems or challenges a person has to face. And those problems and challenges are intensely personal and unique to each person, and will never be able to be categorized as a “mental illness” in the physiological sense.

          • But shaunf, you’re describing physical illnesses. “Mental illness” is an intentionally nebulous term that labels behaviors that have many many different etiologies. Additionally, even the studies that purport to show brain changes consistent with certain diagnoses treat those changes as if they are a permanent condition.

            If mental illness were treated like physical illness, there would not just be tests to show specific changes, but tests later after treatment that showed some sort of improvement consistent with the idea of neurplasticity and healing. Instead, we have a current paradigm in which we treat what are often temporary struggles with not just permanent medicating but with permanent labels without evidence showing progressive disease in the patient being treated.

            And I’ll posit that even the so-called physical brain diseases you’ve mentioned are poorly understood. In the Lyme community, it’s well known that misdiagnoses such as MS, Alzheimer’s, ALS, etc, can all be manifestations a particular Lyme patients course of disease and that properly treating the underlying infectious cause halts the disease process. In fact, Lyme is the number one differential diagnosis for MS and an MS diagnosis should not be made without at least testing for Lyme. (Too bad the tests for lyme are so unreliable.)

            So unfortunately, until and unless a discreet course of disease can be delineated in a truly scientific way (replicatable tests consistent between patients) and a treatment can be shown to halt or reverse that disease process, continuing to insist that behaviors labeled as mental disorders might be a real disease instead of a completely expected response to environmental factors (including infection) is meaningless. Of course they might be. Or they might have any number of causes and barking up the diseased brain tree for decades with nothing to show for it is wasted effort that could go toward trying to change the underlying structural issues that lead so many to feel such distress in their lives.

          • Well said, kindred. I don’t disagree with any of this. You are right that the scientific method needs to be utilized in determining actual diseases. Western medicine has a lot of faults, one being that assumptions are too often made by so-called experts without knowing the root cause of the symptoms. We often look at the surface level stuff rather than digging in to find the real answers, and in some cases I’d posit it’s likely impossible to know what is the actual cause of someone’s symptoms.

          • This is why you are right that the term “mental illness” is more a metaphor than a reality (that science has been able to prove, anyway). We cannot say with certainty, however, that “mental illness” doesn’t exist either.

            I’m past the point of arguing with this stuff. Just want to note that these two back to back sentences are in direct contradiction to each other.

            The first statement acknowledges that “mental illness” is a metaphor (btw something can’t be “mostly” a metaphor, anymore than women can be “somewhat” pregnant). In other words, “it” is not real.

            The second sentence questions the premise of the first, this time saying we “aren’t sure” if “it” is real.

            I suggest MIA get a resident linguist to help people understand when and how language surrounding “mental health” is being manipulated, primarily via conflating metaphor with reality. Certainly as vital to MIA’s “mission” as having a resident nutritionist.

            (Incidentally, science does not determine what is and isn’t a metaphor; a run-of-the-mill English teacher can however.)

          • it’s likely impossible to know what is the actual cause of someone’s symptoms.

            Likewise, note the use of the term “symptoms,” which demonstrates an a priori assumption that there is a disease at work. More junk science.

          • I agree Oldhead. I don’t want to nitpick, but referring to manifestations of distressed states as symptoms does serve to reinforce the concept of distress as being medical in nature and particularly as pathological. Symptoms are generally something one wants to eliminate – like with a pill. And yet distressed states are better dealt with by attempting to frame an individuals experiences in a way that helps the individual understand their distress in a greater environmental context. I think it’s really important to move away from medical terms when trying to help people understand and either overcome or learn to live with emotional distress, which we all experience to varying degrees.

          • Oldhead,

            It’s pretty interesting that you accuse me of lecturing others while you do the same to me. I’d suggest we work on finding common ground rather than trying ways to one up the other person. It would be more productive.

            Most people who experience distressing states take no issue calling their experiences “symptoms.” It is a small minority who do. Calling hypervigilence a “symptom” of trauma doesn’t necessarily have to be pathologizing. It’s a real experience which causes real suffering.

          • I’d suggest we work on finding common ground rather than trying ways to one up the other person.

            Speak for yourself please. I have better (and more challenging) things to do than trying to “one-up” you. I don’t know why you even think the above comments were addressed to you. They were pointing out the contradictions in your posts for others’ benefit. Anytime I address you directly you get hostile and defensive, and complain about “personal attacks,” so I will refrain from doing so from now on.

          • Shaunf, actually the definition of symptom means exactly that. Miriam Webster’s first definition says: “subjective evidence of disease or physical disturbance
            broadly : something that indicates the presence of bodily disorder
            b : an evident reaction by a plant to a pathogen”.

            So pathology right out of the gate is the most common meaning.

            The second definition is completely meaningless in this sense: “something that indicates the existence of something else”. That’s basically a synonym with the word “clue” when defined this way and I don’t know many people who use symptom in the sense of a mystery to solve (unless you’re playing Dr House on TV)

            The word in this usage is medicalized and indicates pathology and while I agree that it is a common usage, I don’t agree that it is accurate or that attempting to facilitate change in the words we use to describe distressed states is wasted effort.

            Change doesn’t come from doing what everyone else does and I’m not arguing this point to be argumentative. I think that using and encouraging others to use less medicalized language is an easy way to help facilitate the change I hope to eventually see in the way distressed people are treated.

          • Oldhead,

            Our interactions have generally felt difficult and unproductive. So yes it is probably best we stop commenting on what each other has to say. We come from different points of view, and like I have said before, both have valid points to offer. It is frustrating that we can’t focus more attention on what we agree upon (like forced “treatment” and the DSM). But so be it. This is the internet, where communication is often challenging.

          • Kindred, I get your point. Using the term “symptoms” refers to a “pathology”. Because most people who do experience terrible “symptoms”/distressed states, however, they aren’t particularly bothered with the term “symptom.” Certainly, I understand that getting away from any medical language is preferable. It’s semantics, and definitely people on MIA pay close attention to these words, which are too often used as weapons by family and so-called professionals.

            I am so accustomed to using medical terminology because that is the system I work in and have been in when I worked at a hospital.

          • But Shaun, that’s my whole point exactly. You work in a medical care system. Wouldn’t it be radical to refer to your patients experiences in terms that humanizes and contexualizes them rather than medicalizes them? You’re in exactly a position to do that. You can choose to use language that is affirming instead of pathologizing. And I’ll bet you could find very covert ways to do so if you think about it. The way to change the system is to put your principles into practice in meaningful ways that do the most good. You already acknowledge so many things wrong with the system that I know you get it, but I’m challenging you to go that extra step whenever possible, especially in your workplace, to choose to use language that isn’t medicalized, to help your clients learn to use language that doesn’t pathologize their responses to their experiences and their situations, and when possible to help your fellow clinicians adjust the way they refer to those in distress. I know it’s an awfully big request but I think we all must try to do all that we can in the spaces we occupy to bring the change we would like to see. Be the change, Shaun. 🙂

          • Kindred,

            You are right, and I appreciate the nudge! I have altered how I talk with clients about their distress already. I normalize their experiences and point out that it would be crazy not to feel distress after dealing with traumatic events. I do encourage them to seriously consider alternatives to pills. I educate them that we require a diagnosis which is not scientific. I do a lot of things that other clinicians don’t do. But I could do more, including the way I conceptualize “symptoms”. I do what I can to not make the situation worse for my clients.

          • “They were pointing out the contradictions in your posts for others’ benefit.”

            You have framed that negatively. I choose to see it as Shaun F. struggling with new concepts within his old framework. And this website can give him the space and friendly people to help him as he grasps these new ideas and how to work them out practically in his life, or we can be pissy with him for ‘contradicting himself.” He has already shown himself open to new ideas and being ‘nudged’ in a direction that most of us would agree is better, but it’s a BIG deal to him. His way of life is on the line, and for anyone to act like it’s not a big deal is showing a total lack of empathy. I’d rather see him struggle with ideas and concepts and really embrace things as ‘his’ rather that people just bully him into something or put him down for ‘contradicting himself’…

          • I have been so deeply depressed I caught physical diseases. My first bout of depression at seven and a half led to mono.

            I couldn’t figure why I was depressed. Looking back it makes sense. I was reading at the 6th grade level, but forced to attend an SBD school for daydreaming since I learned too quickly. The SBD teacher got angry at me for not being dumb enough to fit in.

            Prelude to my life as a career “mental patient.” 😛

          • Sam,
            Thanks for your kind words. You clearly understand my process, and your effort at empathy is greatly appreciated! If you read my posts from 1-2 years ago I think I’ve come a long way in understanding how “treatment” is problematic and why some people see abolishing the MH system is the only reasonable answer (as a side note, I prefer reform where we would reduce prescribing by 95% or more and provide a lot more therapy instead–without diagnosing or (mis)labeling people).

            My sense is that I get flak from some on MIA because I still work in the system which has harmed many of the posters here (and because I don’t support abolishment). While traditional outpatient treatment clinics can and are helpful sometimes, they can create devastation in peoples’ lives. Our doctors don’t have to personally face the consequences of their prescribing practices. Therapists don’t have the feel the negative emotions they evoke in sessions. It is our clients who face these realities in lives. I’ve been personally very frustrated at our doctors when they minimize the harm which we are clearly doing with “side effects” from pills. I think many counselors are oblivious to the reality that therapy can do more harm than good as well. In my therapy I aim to be like Carl Rogers–warm, compassionate, good listener, shows care and concern, and try to leave my ego at the door. It’s amazing how people feel better just knowing that someone cares about them and tries to really understand them without judgement.

            Of final note, I’ll add that I don’t believe I was contradicting myself in the post Oldhead commented on. I was saying that while on the one hand conceptualizing “mental illness” as a metaphor makes sense to me, we still cannot say without certainty that “mental illness” doesn’t exist (kind of like arguing if God exists or not). We do know that the brain develops illnesses, but we don’t know why or if issues like depression or mania have genetic/biological causes. I suspect that some people are genetically vulnerable to certain distressed states like depression; however, what seems to unlock most peoples’ “symptoms” is the environment–namely, trauma of various sorts. Humans are mysterious and probably always will be to some degree. I do think there are genetic/biological differences which may account for why some people experience problematic behaviors or emotional states. I mean, the Ted Bundy’s of the world sure seem different on a fundamental level than the Dali Lama’s (or the rest of humanity).

            Thanks again.

  18. Having been a neurochemist, psychiatrist, and a person with living experience of being labeled mentally ill I agree with Steve. The reduction of feelings to chemistry must end. This dehumanizes us. We cannot put our feelings under a microscope. “Mental illness” is more about a loss of dreams than in dopamine.

      • Oldhead, so now you listen to what psychiatrists have to say?

        Daniel, it’s not just about neuro chemicals. It’s about brain wiring. Neural connections don’t form correctly when someone is exposed to complex trauma in childhood. This is one reason why trauma survivors often struggle with developing healthy adult relationships.

        • Shaun F,
          I had hoped to build some dialogue with you up above, so maybe that means you aren’t interested in my experience with my wife and I’ll stay out if you want me to do so.

          Yes, it is about ‘brain wiring’. The trauma causes dissociation. Dissociation over time then causes neural atrophy. But even once the trauma is addressed and ‘healed’, the neural atrophy is still there. THAT is why I consider the dissociation worse than the trauma because it has taken me years to help my wife thru her various alters reinvigorate all those neural pathways that had atrophied to nearly non-existence. I promote lots of tasks that help them learn to work ‘together’.

          But beyond that the dissociation also splits up the brain/mind’s traits/abilities and one alter may control the trait/ability that another needs to address other aspects of an issue she is struggling with. Say for instance eating issues (‘disorders’). One girl struggles greatly with her poor body image even though my wife has a 5’6″ frame and only weighs 127lbs. Well the other girls have a really GOOD body image. One girl told me, “I look damn good for 50!” But connecting her good self image to the girl with the bad self image takes time and reinvigorating those neural pathways and teaching them how to do it.

          Trauma and dissociation and neural wiring and all that are all interwoven but they are not the same and they effect issues differently…
          Sam

          • Hi Sam,
            I think there are many valid ways of conceptualizing these complex issues. I see disassociation as a natural response to trauma. What you say makes a lot of sense from how you experienced your wife’s disassociation. I think disassociation becomes very unmanageable when people don’t have the tools to ground themselves to their core self/the moment. When people are regularly “not here” in the present, life can become quite difficult. The trauma is the reason people go there but it can and does happen in everyday life without one trying to.

            I myself do it more than I would like. I recall starting to disassociate in school a lot. It was probably because my father was an alcoholic and my parents weren’t showing much happiness. I sometimes disassociate in the worst times, like when I’m co-facilitating a group at work! I also disassociate frequently when doing mundane actives or even while driving!

            I couldn’t imagine how difficult it would be to support someone with severe disassociation.

          • Hi Shaun F,
            I know you take a lot of flak on this website, but I think you are asking some of the right questions, and realizing there’s more to things than simply rebelling against ‘the system’. I’m sorry I don’t seem able to convey what my wife and I have learned. It seems you get hung up on her ‘extreme dissociation’ rather than understanding that we are ALL in the same boat; she just happens to be further along the spectrum than most, but NOT by any means the worst.

            Her experience has taught me so much about how I function because I don’t view her in a different category from me. When we first started this journey, she repeatedly told me, “I don’t know what ‘healthy’ looks like, and so it forced me to become as healthy as I could so I could be a good example for her., and yet having distinct ‘alters’ allowed me/us to dissect the issues of trauma and dissociation and neural atrophy and attachment systems, etc in a way that would have been otherwise impossible if I’d had to figure it out using my own experience or others not so far along on the spectrum.
            Sam

          • Hi Sam,

            Thanks for your empathy! I do take lots of flak but it’s ok.

            I agree with you that dissociation is on a spectrum, like every other human experience. I call your wife’s situation “extreme” because she meets DSM criteria for DID, which is very rare. While all of us disassociate to some degree, the vast majority of us, including trauma survivors, never develop alters. And you are right that there are very severe cases where people never are able to do real healing.

            I’m glad to hear that your wife had you to support her. When people are going through difficult experiences, one thing I know for sure is that they need huge amounts of support and love.

            Have a great weekend!

          • Oldhead,

            I wasn’t lecturing anyone but rather pointing out that brain neural connections are different than brain chemicals, and that I think the former are relevant to the conversation around distressed states. Also, every “expert” has opinions, and often these opinions aren’t consistent.

          • Expert opinion is, in my view, not relevant to this discussion. We’re talking about science, or I thought we were. The concept of “neural connections” is very soft science at this point – there are not “connections” in the same sense that wires connect to each other. It is certain that neurology comes into play when talking about distressed states, but saying that provides no evidence regarding the causes of distressed states, which is the really relevant point here.

          • I wasn’t lecturing anyone but rather pointing out that brain neural connections are different than brain chemicals,

            So since Daniel is a mere neurochemist he’s unqualified to comment here, because you’re talking about “wiring,” is that the gist? Within the context of this discussion he is the clear “expert.”

  19. Opened up a discussion about use of Finnish Dialogue to cure “schizophrenia” with my parents. Both were incredulous. “How can you cure a brain disease by talking?”

    I tried explaining this would make sense if the problem were not organic in nature. As a preacher, Dad rejects the materialist view of humanity. It’s still hard for him to accept since it runs contrary to the mainstream media narrative spanning both sides of the spectrum.

    Mom argued the brains of the “mentally ill” look different from normal people’s. I cited Dr. Andreason’s paper about how the structural changes were directly linked to the “meds” used to sedate the people. Also pointed out the people in that 90’s documentary we watched would all be undergoing “treatment” as a matter of course since psychiatrists were doing the research.

    (Leaving someone “treatment naive” was unethical. They might recover and show your “science” was a bunch of poppycock, depriving poor shrinks of needed income for yacht payments.)

    Sad how Mom is letting her mind go in retirement. I blame the SSRI, but the 12-15 hours of TV she consumes daily is even more to blame.

    The internet can be addictive too, but it can engage the mind more if properly used. It’s interactive in a way TV cannot be.

    • Talking about your Mom reminded me of a conversation I had with my Mom. At one time I was a great believer in the SSRI’s and became like a fanatical preacher trying to make converts of everyone so that they could get on the damned devil’s tic tacs too. I’m ashamed of that now. Anyway, I went to visit my Mother one weekend and convinced her to ask her doctor about taking them. She did and her wonderful doctor gave her a nice, big prescription of wonderful Zoloft. I was so happy to know that her great sadness, which she seldom shared with anyone else, would finally be taken care of. Two months later I was visiting her and she seemed so much happier and I observed that the wonderful Zoloft must be working for her. She looked at me and laughed and I asked her what was so funny. She told me that she’d thrown that bottle of pills away and never planned on ever taking another one. I asked her why she’d do something like that and she said that after taking them for a month she was sitting in the kitchen one day doing absolutely nothing and upon looking at the floor wondered why it was so dirty. If you’d known my mother you’d have known that she was never just sitting doing nothing. And she was a meticulous housekeeper, even though she worked 8 hour shifts in a plant doing hard labor. She said she looked around and realized that she was allowing the house to fall apart and she knew it was those damned pills. She felt numb and zombified and wasn’t going to put up with that. So out went the pills! It was the first thing that started chipping away at my great faith in the SSRI’s.

      I think it’s great that you’re doing one on one education with your parents. There’s a victory with every individual who is educated about the realities of the battle we’re fighting.

      • I struggle with executive function problems more than ever after 25 years of brain damage. Lately I’ve developed ME symptoms making me get exhausted easily.

        But I keep my place cleaner now. Despite exhaustion, organizational problems, and sometimes cramping from head to foot. Know why?

        I actually CARE again! Same with my social interactions. I care about how other people feel.

        Remember the Care Bears (back in the 80’s) and the villain they dealt with? Dr. Cold-Heart who always tried to freeze kids’ emotions so they numbed out and didn’t give a rip about anything? A man well ahead of his time. Lol.

  20. As a survivor of psychiatric intervention and former student of abnormal psychology, I’m not phased by the study published in Psychiatric Services or Mueser’s commentary. Psychiatry (and it’s little sister psychology) are pseudoscientific disciplines at their core. They rely on subjective analyses that cannot and will never be verifiable.

    This observation recently hit home for me. After five years of sobriety and nearly four years off psychiatric medication, my parents and I felt that it was time to terminate their legal guardianship (established during my first psychotic episode). In order to do so, I had to meet with a social worker through our local probate court. This was my first interaction with a mental health professional that works for the state since my recovery. During our meeting, I discussed some of my concerns regarding the damaging effects of antipsychotic medication (which should really be referred to as neruotoxins, but I spared her that terminology). I thought we had a good conversation and left our meeting feeling optimistic. However, I later learned that she described me as severely anxious and paranoid, a term often associated with delusional and irrational behavior, in her report. This obviously couldn’t be further from the truth, but fortunately, it did not stop the judge from terminating my guardianship. However, it served to reinforce my conviction that the mental health professions are a joke and how grateful I am to no longer use their services.

    Therefore, my recommendation is to take this latest study with a grain of salt. Continue fighting the good fight and all will be well. In the end, the worldview promoted by MIA will prevail. Three things cannot be long hidden: the sun, the moon, and the truth.

  21. OPEN LETTER TO FREEMAN AND MUESER

    Treatment as Usual Falsified. Call for Studies to Find out why Open Dialogue Achieves better Results

    Current treatment recommendations are based on neuroleptics for symptom reduction offered to all patients. However focus is shifting from symptom relieve to recovery getting more attention. Bergström et al. 2018 falsifies treatment as usual. Studies to identify the contribution of elements of alternatives that achieve very good treatment results is suggested.

    Neuroleptics

    Neuroleptics are used to ease symptoms (Leucht et al 2009) and to prevent relapse (Leucht et al 2012) with evidence at the beginning of the psychosis for a minority of patients. There is no evidence that antipsychotics promote “psychosocial functioning, professional functioning, and quality of life” (Buchanan et al 2010 PORT Treatment Recommendations). Bjornestad, Larsen et al. 2017 admit that evidence of long-term maintenance medication is missing: “Due to the lacking long-term evidence base (Sohler et al. 2016) …” Current use of neuroleptics has been criticised (6,7). Studies show the advantage of a shift to lower doses for fewer patients over a shorter period of time. Open dialogue quadrupled recovery, reduces schizophrenia per year to one tenth and disability benefit / illness decreases to one third in naturalistic studies (3,5). The evidence in support of OD has been criticised being of low quality, and randomized controlled trials are required to draw further conclusions.

    Recovery

    Recovery is used in several meanings and has gained attention and has now become mainstream. The Norwegian Government’s Strategy for Good Mental Health (2017-2022) “Mastering Life” is based on WHO’s Action Plan 2013-2020 and The European Mental Health Action Plan 2013-2020 and EU JOINT ACTION 2016. Both the United States, Canada, New Zealand, Australia, the UK and Ireland are building their national strategies on recovery. The Norwegian Mental Health Expansion Plan mentions the needs of the user/patient as a starting point, “mastering one’s own life”, “successful return to working life” and “entering into a social relationship with family and friends” (Ottar Ness 2015).

    Falsification of Treatment as usual

    Tomi Bergström, Jaakko Seikkula et al. 2018 (1) compare FEP Open dialogue patients with all FEP patients in Finland over a period of 19 years. Open dialogue (OD) uses neuroleptics for 20% of patients in the beginning, standard treatment (CG control group) 70%. 97,3 % of the CG get neuroleptics at some point. At the end 36% of OD patients use neuroleptics, for CG it is 81%. Disability allowance, readmission and patients under treatment halves with OD, reflecting better recovery.

    This register study reflects reality/facts about Finland on national level. Treatment as usual is falsified as the most effective treatment. RCTs could give further information which of Open dialogues approaches e. g. reduction of antipsychotic medication, help within 24 hours etc. contributes to the good treatment results.

    Studies to find out why Open dialogue promotes recovery

    Scientific studies can only explain reality not disprove. Respect of reality could considerable improve treatment and health of patients. Therefore I have asked Norwegian research institutions in 2018 to do further studies: “Paradigm shift: Can Open dialogue achieve quadruple recovery rate, reduce schizophrenia per year to one tenth and disability allowance/sickness is reduced to one third?

    The United Nations Special Rapporteur on the right to health Mr. Pūras has called for «World needs “revolution” in mental health care» to «enable a long overdue shift to a rights-based approach».“There is now unequivocal evidence of the failures of a system that relies too heavily on the biomedical model of mental health services, including the front-line and excessive use of psychotropic medicines, and yet these models persist” Mr. Pūras said.

    Strengthening psychiatrists respect of reality

    In order to make studies possible psychiatrists respect of reality should be strengthened. See comments on psychiatrists reflections on medication-free program: https://www.researchgate.net/publication/330738021_Psychiatrists'_reflections_on_a_medication-free_program_for_patients_with_psychosis/comments

    Open dialogue medicates less than halve of patients. Medication free treatment (2) beds cover about 60 beds of 4000 beds in Norway. The impact on national level is very small looking at how many additional patients get medication free treatment.

    http://wkeim.bplaced.net/files/recovery-call.html

    • Thank you, Walter. A quote from the study concerning psychiatrist’s attitudes toward the medication free program in Norway: “Psychiatrists considered medication-free treatment as an unscientific option for a stigmatized patient group; they believed that the advent of such a program is due to proposals from some dissatisfied users and their supporters and not from the majority of patients; in spite of active psychotic symptoms and lack of insight, patients had a crucial impact on choice of treatment and accordingly on adherence to medication; and psychiatrists reported that they in spite of governmental instructions utilized professionalism against unscientific ideology.”

      It’s quite ironic to hear the mother of unscientific medicine, also known as psychiatry, refer to medication-free programs as “unscientific ideology.”

      I will continue to pray for those still suffering and implore anyone in need of treatment to seek options grounded in recovery principles.