Reflections on Myth Machines, “Mental Illness,” and the Perils of Good Intentions

Robert Nikkel, MSW
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Once again this year, I was fortunate to attend the annual Saks Institute symposium held at the University of Southern California’s Gould School of Law.  The topic — fittingly enough in LA — was mental illness in the movies.  Several filmmakers were attendance as were a variety of others — some academics, some attorneys, some mental health professionals, and a variety of others that included family members and some NAMI advocates.  My observations in this blog are made with the belief that those who participated in the symposium were some of the “best and the brightest,” and in no way do I mean to be critical of their aspirations or devotion to the cause of helping us move beyond stigma and discrimination.

Since I’m not a great movie buff, I decided early in the sessions to listen as if I were an anthropologist — good advice on participating in many such functions, as I’ve learned over the years.  What struck me was the degree to which public discussions are shaped by two related categories of problems. First, there were ideas that I believe are misconceptions and, second, positions that are shaped largely by a lack of important information — especially information which isn’t influenced by a profit-oriented corporate culture.

The misconceptions:

  1. Schizophrenia and other “major mental health problems” are lifelong afflictions and must be treated with drugs.  This assumes to begin with that schizophrenia and other disorders can be reliably and consistently diagnosed, and that they’re mostly illnesses.  And that one never recovers.  And that the drugs are effective.  None of these assertions are consistent with the findings of unbiased longitudinal research.  Nor do these beliefs fit with the experience of so many people who have been so diagnosed and recovered to live full meaningful lives.  It reminds me of my early but mistaken teaching that people with “schizophrenia” can never really establish mature relationships. At least we don’t teach that anymore, do we?
  2. Drugs are pretty safe.  One way of thinking about all drugs is that they are essentially poisons. This has been asserted all the way from the Greek physicians to contemporaries such as Dr. David Healy and Dr. Peter Goetzsche.  The difference between a poison and a medication is that the risk/benefit ratio comes out in favor of the medication. But that doesn’t negate the fact that there are negatives (side effects), both short- and long-term.   Again, research and personal experience shows that these drugs too often result in life-limiting outcomes like chronic low functioning, metabolic syndrome, and a type of chemical dependency which becomes apparent when a person tries to reduce or go off the medications. One thing is for sure about this type of chemical dependency: no one gets a high off Seroquel or Thorazine.
  3. Regulators like the Food and Drug Administration protect us, do so only after careful review all of the data.   The reality is that much of the relevant data never makes it to the review process.  Add to that the fact that many, if not most, of the regulators have ties to the pharmaceutical industry.  Whether the FDA officials acknowledge these factors, it biases their work in favor of approving drugs.  The reality is that it takes only two positive trials to make a drug approvable by the FDA — and these studies are usually funded by, shaped by and even written by ghostwriters of the drug companies.  There is a movement now to make research data fully transparent so that regulators and advocates can be informed of the heretofore hidden outcomes.  Finally, the positive studies, even if they are reasonably objective are normally for only short-term effectiveness.  The work of long-term researchers like Martin Harrow clearly demonstrate that the longer a person is on medications, the larger their dosages and the more medications at one time that they are prescribed are all associated with poorer outcomes.
  4. Medications are what patients.  One has to ask if this is really the standard of practices that should be used.  Is it the standard that other medical disciplines use?  For example, if I have the flu and say to my primary care physician that I want Xanax to make me sleep through it, would that make good clinical sense just because I demand it?
  5. We do a good job of providing informed consent when psychiatric medications are prescribed.  This is doubtful.  Informed consent procedures are routine and bureaucratic and very little is addressed other than the risk of tardive dyskinesia and, on rare occasions, the risk of metabolic syndrome.  I believe that fully informed consent would have to include an honest discussion of longitudinal studies and carefully constructed research findings that demonstrate the likelihood of poor long-term outcomes from the usual pattern of prescribing psychiatric medications.
  6. Chemical imbalances are the root causes of “mental illnesses” and, in fact, we are dealing with illnesses or brain disorders just like heart disease or cancer.  This misconception is usually accompanied by a belief that we are near discovering the genetic basis of these chemical imbalances. This belief is in spite of the fact that this search has been conducted for decades without finding any such results, and the fact that there is no laboratory test that can confirm or deny a chemical imbalance.  If you read carefully the reports of studies that seek the neurobiological answers, they speak in carefully crafted phrases about the multiplicity of factors that are believed to contribute and that many more studies will be needed, ie, we need more money.  There were even statements that “trans-generational” genetic changes are caused by trauma, ideas that have an attraction because of the social impacts of genocide and slavery — but these are assertions that have no basis in research.
  7. Electroshock treatment is a safe and effective.   This misconception ignores the fact that electrical currents must necessarily impact the brain, and that these “treatments” cause brain damage which includes memory loss.  Do we really understand what small electric currents do to the most delicate — and, in many ways, least understood — organ in the body?

Lack of Information:

The misconceptions described above can have several causes but they all have in common missing information — a lack of knowledge of research, emerging effective programs, and other important pieces of information.  Here is my beginning list:

  1. When I ask mental health professionals about their awareness of the classic long-term outcome studies conducted for decades by Drs. Martin Harrow, Courtenay Harding, Lex Wunderink and others, I almost always get a blank stare.  This is more than a little discouraging.  These well-constructed longitudinal research studies show consistently that people who get diagnosed with “schizophrenia” and other psychotic disorders do much better than we believe their prognosis to be — especially if they can carefully reduce and avoid lengthy periods of time on psychiatric medications.   When one digests these published reports, it seems highly inappropriate to keep using terms like “chronic mental illness” or “serious and persistent mental illness.”  In fact, if I were to ever again be in a state mental health commissioner position (which, clearly, I am NOT seeking), I would immediately work on initiating a legislative discussion about whether these terms should still be used in statutes and administrative rules.
  2. A related area of easily accessible knowledge is the Open Dialogue approach to working with youth and families experiencing a first psychotic or “extreme state” emergency.  This type of supportive intervention has been used in Western Lapland, Finland, for decades — successfully restoring young adults to functioning in school and work in about 80% of the families served.  Medications are used, but sparingly, and almost always for short-term emergency use.  Adaptations of Open Dialogue are emerging in the United States in at least 2 locations—Framingham, Massachusetts, and soon in Atlanta, Georgia.  There are other similar programs in about 75 other communities — all of which should be better known and replicated because they, too, offer hope that major mental health challenges do not have to result in a lifetime of disability, illness and medications.
  3. Hearing Voices Network (HVN) meetings are yet another approach lost in a “black hole” of knowledge for most mental health professionals.  Again, Western Europe is far ahead of the United States.  For example, these mutual support groups have been meeting for decades In the UK. People who participate find them much more useful than what the medical model provides.  In addition to peer support, HVN meetings offer practical advice and skill-building to cope with and learn from what the medical model calls “auditory hallucinations.”  Someday these meetings in the US should be as common as 12-step programs for alcohol and drug addictions.
  4. The rules used by the US Food and Drug Administration are biased toward approval of medications with dubious effectiveness and even safety.  As noted above, most people don’t know that it takes only 2 studies with positive outcomes — regardless of how many other studies have been buried or not reported because they show negative outcomes.  FDA requirements rarely consider long-term outcomes, so that, combined with staff who often have ties to the pharmaceutical industry themselves, the approval of psychiatric medications does not have a strong track record for safety or effectiveness.
  5. Finally, I would be amazed if one in 100 mental health professionals have any conception of the phenomenon of dopamine supersensitivity — the neurological counter-reaction to medications that interfere with the dopamine neurotransmitter system.  Informed consent should go far beyond the customary superficial warnings about tardive dyskinesia and weight gain and include the reasons why psychiatric symptoms re-emerge when tapering or going off medications too quickly occurs.  These “decompensations” are mostly likely a drug withdrawal effect, not the return of an “illness.”

I could make this blog longer by describing the minimal recognition that the role of trauma in producing far more “mental disorders” receives, the preference being for alleged genetic factors that are frequently referred to as causes. I will refrain from talking about the dearth of professional awareness regarding the reliability of diagnoses, and the way in which the American Psychiatric Association has exploited this by expanding the number of diagnoses listed in each new edition of their Diagnostic and Statistical Manuals (DSMs).

Departing from anthropological observations and moving toward an ethical perspective, I think we should be chastened by the real message of the classic movie “One Flew Over the Cuckoo’s Nest” — at least in part — that the “treatments” portrayed in the movie were provided with the best of intentions, albeit in and by authoritarian institutions. I have to wonder if someday the belief that prescribing drugs is the right thing to do for patients will be seen through the same kind of lens —well-intentioned, but seriously flawed.

* * * * *

“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.”

– C.S. Lewis

 

 

26 COMMENTS

  1. Bob: Thank you for attending this symposium. Your observations must have been based on comments that people made and assumptions that their stated opinions were based on. Were you able to publicly counter any of this mythology or did you mostly find yourself trapped in the role of ‘observer?’ I ask because I rarely get asked to participate in panel discussions as a presenter but when I do, I waste no time in sharing my personal story after years of observing my daughter’s adverse reactions to toxic neuroleptics and her adverse experiencing while going off her medications cold turkey.

    More often than not, when I am not ‘preaching to the converted’ I find myself attending these mainstream mental health events where NAMI tends to dominate by serving as the sole voice of the ‘consumer’ (even though their leadership is clearly biased towards professionals, family members and consumers who are happy with the status quo).

    My point is that there are very few public events in which critics of the status quo such as MindFreedom, etc. are invited to speak and even if critics of the status quo queue up to ask questions and give counter arguments during the Q and A portion of these events, our questions and comments are discounted, given less time, and glossed over.

    What role do you think philanthropy, such as FEMHC will play in building opportunities for professionals, consumers, and family members to hear different narratives about how we treat trauma and grief in this society? What strategies do you recommend to help the stories of individuals and families harmed by psychiatry and counter arguments from dissident professionals reach a mainstream audience?

    NAMI’s ‘Family to Family’ curriculum, funded by big Pharma. is one of the worst and most discouraging examples of archaic information being disseminated to family members. I highly urge you and your colleagues in FEMHC to read this curriculum carefully, as well as their website, if you can stomach it, document the egregious errors point by point, and ask NAMI for a public debate on the topic of how they are educating family members.

    I think NAMI does not serve the common good, other than provide opportunities for family members to enjoy a little fellowship and I think NAMI’s monopoly on public education and policy/legislation work is the elephant in the room that is an urgent priority to changing the narrative around mental illness.

    Some of us are are trying to organize for change (greater choices and alternatives in the MH system) and create sanctuaries like Soteria, while supporting our loved ones emotionally through the process of healing from psychiatric harm and there is very little support for our families and our children, other than NAMI. Without a large, national education/outreach/advocacy to replace NAMI, we parents are trying to fight Goliath and there is noone watching our backs.

    • “NAMI” is every bit as bad as “madmom” says it is…. When I got away from the pseudoscience drug racket known as psychiatry over 20 years ago now, and tapered off psych drugs, I actually thought that I could put that hell behind me. But NO!, “NAMI” reared its ugly head. One of the local movers-and-shakers of NAMI was a guy who sexually molested his young daughter, then took her to a shrink, and had her diagnosed & DRUGGED, so he could dismiss her true story by saying, “Oh, don’t believe what she says, she’s crazy….”…. The local “Community Mental Health Center” finally drugged her to death…. Literally.
      NAMI came for me, through a local cop who actually raised $$ for NAMI. He filed fraudulent criminal charges against me, because he thought I needed “psychological help.” The Police Persecutor wanted me hauled off in handcuffs and shackles, but I represented myself Pro Se, and the Judge wisely chose not to follow that Persecutor’s recommendation. When I explained to the judge, how I was designing and implementing my trial strategy during the arrest procedure, it kinda blew their “incompetent” argument out of the water…. The cop actually believes the NAMI Party Line. Remember, what’s the difference between “NAMI”, and “NAZI”?….m/z…. Think about it….. God Bless you, “madmom”!

  2. Robert,

    Thanks for this interesting article! I was thinking that this seems like a “rehash” of many other articles here, which is true in a way, but you explained each concept well with relevant references.

    I do wonder – if these people with these archaic beliefs were the “best and the brightest”, what are the “worst and the dumbest” like? 🙂 Because the awareness of hopeful psychosocial approaches to suffering among these best and brightest people sounds pretty horrible.

    Regarding this: 3) “Medications are what patients.” – You must be missing a word here. Maybe “Medications are what patients need?” Of course not everyone does… and suffering people are not patients; patients would be people with a known medical illness, and hardly any pseudocategory in the DSM is a medical illness.

    I’d like to harp a little on my favorite point – the lack of validity and reliability of DSM diagnoses. This cannot be emphasized to people enough… because as soon as people forget it, they start talking about “schizophrenia” and “depression” as “illnesses” that people “have” that are “just like diabetes and cancer.” Once people believe this bullshit, their minds get warped and the can’t think about people in context and relationships anymore. It’s truly an invasion of the psychiatric mind-snatching labels.

    To take the example of the pseudoillness schizophrenia, that term hasn’t been taken seriously by many more evolved therapists and theoreticians for years. But most people don’t know that. They should be educated about Psychosis Spectrum Syndrome (From Van Os), not talked to as if the argument is “whether or not schizophrenia is an illness that is primarily genetically/biologically caused or primarily psychologically caused.” There is no singular schizophrenia period.

    • No there isn’t, because schizophrenia is a syndrome- a collection of signs and symptoms- and not a disease unto itself. As the organic reasons for the appearance of the syndrome are teased out of the syndrome, psychiatrists immediately forget about them and never pay attention to them again, losing their own ability to recognize and treat them in the process.

  3. Robert, regarding point #2, above, under “Misconception”…. Yes, I realize this is an “anecdotal” report, but I still remember it clearly. I attended a boarding school in 10th grade, and a senior there had a Rx for Thorazine. He LOVED the stuff. He would take some, and then spend many, many hours “asleep” in bed. He also smoked a LOT of cannabis, and drank alcohol. Hey, he was a rich kid, from a “good home” in Suburban NY…. But, about 15 years later, I was incarcerated, and TORTURED, with 1,000mgs/day of Thorazine…. So, yes, *some* folks DO “get a high” from *some* psych drugs, *sometimes*, but for MOST, they either do little if anything, or else they are HELL. The actual FULL EFFECTS PROFILE of most psych drugs is basically unknown, clinically…. That’s the hell of it – it’s not so simple as “effects/side effects”. There is a wide range of effects, for different persons, at different times.
    Multiple, random, unknown, unknowable, and uncontrollable variables…….
    How is THAT “science”….????……..
    KEEP UP THE GOOD WORK, my friend….
    (c)2016, Tom Clancy, Jr., *NON-fiction

    • The US was taken over by a tyranny of robber barons, who propagandize the importance of, employ, and empower the “omnipotent moral busybodies.”

      Thanks for speaking out about some of the misconceptions and misinformation within today’s psychiatric system, Robert. And it is a shame the “best and the brightest” within the “mental health” system are so misinformed still. An jimg, you’re right, ‘A Beautiful Mind’ is an example of Hollywood misinforming the public regarding “mental health” issues, John Nash healed from his “mental health” crisis by getting off the drugs.

    • No, he spontaneously recovered his senses while he was in his mid 50’s and received his prize several years after his recovery. There was some apprehension among the straight people he’d do something bizarre when he went up to accept his Nobel during the awards ceremony.

  4. I have witnessed coercive, forced mental health “care” in the case of my mother who had a very traumatic childhood, then in the case of one of my sons who was the driver in an ATV accident in which his father was killed. I began asking how the mental health system can legally get away with consistently doing these forced interventions. Why is the law always on the State’s side, never the patient’s? From all sides I received the answer that they have the power to do it, but no one could tell me the source of their power. Finally I realized the psychiatrist/patient relationship is just like the slaveowner/slave relationship–they can do what they like to you without question. Then I reread the 13th Amendment to the U.S. Constitution and found the source of the state’s power in any situation where one becomes involved with the “authorities.” It literally IS the slaveowner/slave relationship. Legalized slavery never ended in America. Keeping the institution of slavery is how the status quo is maintained.

    • Amendment XIII:
      Section 1:
      Neither slavery nor involuntary servitude, except as a punishment for crime whereof the party shall have been duly convicted, shall exist within the United States, or any place subject to their jurisdiction.
      Section 2:
      Congress shall have power to enforce this article by appropriate legislation.
      ~ratified Dec. 6, 1865
      ~~~~~~~~~~~~~~~~~~~~~~~~
      And remember, the says whatever you can get a judge to say it says, until and unless that judge, or an appeals judge, says otherwise. THAT is the REALITY of our crooked, corrupt “legal system”. It is **NOT** a “justice system”….

    • dkjamil: I just watched the movie ‘Freedom’ last night about the Underground Railroad. I’ve often reflected about what it would take to smuggle individuals in crisis to states and or countries where there is no involuntary outpatient commitment laws such as Tennessee but the sad fact is that people in crisis tend to draw a lot of attention to themselves. For instance, when my daughter experienced extreme states in the past, trying to process extreme fear or rage she would often shout, wave her arms, jump out of cars, stand in traffic, strip her clothes off, mumble to herself, etc. It is difficult to support someone in this state, let alone, guide them to a safe sanctuary where people who are specially trained can support them through the process of madness, especially when they have had their voice stifled for years and years due to incarceration, isolation, institutionalization, restraints, forced drugging, etc. I know other parents who are looking to purchase rural property in the state of Washington to create a safe sanctuary for children experiencing extreme states who are seeking emancipation from the drug cycle but one must also make friends with the neighbors, strike partnerships with the local law enforcement, etc. it takes years and years of hard work, just to save one or two individuals at a time. Frankly I don’t know we can do it without system dollars to hire helpers. It’s exhausting, even with a small group of committed psychiatric survivors and family members!

      • madmom, I have read about several places that were established to provide the safe, supportive, and loving environment these people need, like Mosher’s Soteria House. However, each time they lost funding and were shut down even though they were successful in helping people recover from trauma who had the same symptoms you describe. Unfortunately, the biomedical model appears easier, faster, and cheaper, although it has been proven to be none of these. It comes down to politics and control and the fact that our laws (backed by the 13th Amendment) allow our society to dispose of unwanted people by allowing the state to enslave them. This option should never have been available, and it certainly shouldn’t be allowed now.