Researchers Make the Case to Rename Schizophrenia

The authors outline reasons for renaming schizophrenia and the way a change can reform practice.

Hannah Emerson
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A recent editorial, published in Epidemiology and Psychiatric Sciences, makes an argument for getting rid of the schizophrenia diagnosis, listing five reasons for the change, five signals of change, five challenges of change, five promises of change, and five steps for change. The authors argue that changing the name for schizophrenia is a necessary step to modernize psychiatry and mental health services worldwide.

“Renaming a particular form of mental suffering should be accompanied by a broader debate of the entire diagnosis-evidence-based-practice (EBP)-symptom-reduction model as the normative factor driving the content and organization of mental health services that may be detached from patients’ needs and reality, overlooks the trans-syndromal structure of mental difficulties, appraises the significance of the technical features over the relational and ritual components of care, and underestimates the lack of EBP group-to-individual generalizability,” write the authors, Sinan Guloksuz and Jim van Os.

Schizophrenia. Torn pieces of paper with the word Schizophrenia and mental disorder. Concept Image. Black and White. Closeup.

In a recent critical perspective article, the authors discussed factors that may explain the “slow death of the concept of schizophrenia” as well as “the benefits of embracing a spectrum approach with an umbrella psychosis spectrum (PSD) category” in response to the stigma and misperceptions the current DSM label perpetuates. The following argument is an extension of their previous work, aiming to cover the most pertinent points towards renaming schizophrenia.

Five reasons for the change

  1. The name schizophrenia has been morphed into a confusing and frightening term, derived from the literal translation ‘split mind’ in Greek.
  2. Schizophrenia is associated with “insanity, hopelessness, desperation, violence, stigma and discrimination,” negatively impacting those individuals diagnosed, their family, and service providers.
  3. Individuals diagnosed with schizophrenia often refrain from disclosing this information in fear of repercussions and discrimination. Communicating the diagnosis can also be a struggle for providers.
  4. Schizophrenia misrepresents a much broader psychosis spectrum. The term accounts for perhaps 30% of those with poor outcomes.
  5. “The deterministic and gloomy prediction of schizophrenia poses a paradoxical challenge for intervention efforts.”

Five signals of change

  1. “Several Asian countries have already officially abolished the term schizophrenia,” e.g. Japan, South Korea, Hong Kong, and Taiwan.
  2. Alternative names “have been proposed by scholars, service patients, and professional organizations across the world…”
  3. “Two major academic journals for schizophrenia research have substantially revised their titles within the limits of pragmatic considerations,” e.g. from ‘Schizophrenia Bulletin’ to ‘Schizophrenia Bulletin: The Journal of Psychoses and Related Disorders.’”
  4. Schizophrenia as a distinct categorical entity has been disputed and “the spectrum approach has gained traction.”
  5. “The timeline of psychiatry confirms that change is the only constant.”

Five challenges to change

  1. In order to rename schizophrenia, “serious consideration of societal, medical, economic, and legal ramifications” is warranted.
  2. More research is needed in order to “evaluate the positive and negative impacts of renaming.”
  3. Despite many propositions of a new name over the last decade, “there is no consensus on the replacement for the term schizophrenia.”
  4. Many believe the term schizophrenia to be clinically sound and view it as an “established and time-tested diagnostic category…”
  5. “Extensive reconceptualization” has to be concurrent alongside semantic revision, an even bigger challenge than simply renaming.

Five promises of change

  1. Renaming could differentiate “the new medical term from metaphoric misuse of the term schizophrenia and its adjective labeling from ‘schizophrenic’ that sustains the negative public image of the illness.
  2. Renaming “will reduce iatrogenic hopelessness, stigma, and discrimination.”
  3. “A new name will stimulate public awareness” and aim to reduce stigma by improving the public’s perception.
  4. Renaming “facilitates communication and shared decision-making between patients and mental health professionals” and can promote engagement in services.
  5. A new generation of “open and critical science towards reconstructing psychosis” may emerge from shifting to an umbrella diagnosis category like PSD.

Five steps for change

  1. Collaborating with patients and creating action platforms is productive in “facilitating bottom-up momentum, educating the public and mobilizing forces for change.”
  2. “European countries, where momentum for change appears to be picking up, may attempt creating, at the level of the European Psychiatric Association, a joint forum with patients.”
  3. Mental health providers should “be encouraged to start with using a balanced and scientific approach in working with psychopathology in the psychosis spectrum,” since change is most productive at the bottom-up level.
  4. “Academic psychiatry and mainstream journals may work towards a more balanced and modern science of psychosis, i.e. one that also takes seriously the 70% of the phenotype not characterized by a poor prognosis.
  5. Starting with the countries where change is already underway, a reevaluation and “modernization of the psychiatric curriculum is urgently required.”

Guloksuz and van Os’ commentary is among others actively critiquing dominant narratives of mental illness and proposing shifts in both perception and practice. The authors further clarify the need for “innovative models of integration of social and mental health care,” alongside strengthening resilience in the existential and social domains.

“It is proposed that changing the name and the concept of ‘schizophrenia,’ which goes further than a mere semantic revision, may become the first step that allows catalysation of the process of modernizing psychiatric science and services worldwide,” proclaim the authors, “The road to change is long and challenging, but there is no obstacle other than our inner resistance to change.”

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In addition, the article did mention this website as a potential resource. See the excerpt below:

“Action platforms like these may connect with each other in movements that aim to help psychiatry to modernise such as htttp://www.madinamerica.com. Although some of the content at madinamerica.com may be considered anti-psychiatric, service users sometimes argue that elements of psychiatric practice may be considered anti-patient. In other words, there is a need for a dialectical debate where the consideration of the extreme opposites allows for unbiased truth-finding in the middle.”

 

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Guloksuz S & van Os J (2018). Renaming schizophrenia: 5 × 5. Epidemiology and Psychiatric Sciences 1–4. https://doi.org/10.1017/S2045796018000586

29 COMMENTS

      • For many years, I’ve accepted the idea that delusions arise from attempts to explain events originating from trying to explain distorted perceptual experiences. For instance, paranoid notions can easily arise from the sensation of being watched or from auditories whispering or saying bad things about you. Such things are likely to have a biological basis, all right, that can be corrected, but obviously not with “antipsychotic” drugs which simply shut everything down (and you, too, if you overdose).
        The problem isn’t with the much despised medical model, but its psychiatric version, which ignores physical difficulties outside the brain that affect its functioning, and which can be manifold. For example, I give you Theron Randolph’s presentation of what he considered cerebral allergies, curable with water fasting and future avoidance, to the APA about 60 years ago, in which he presented histories of 2000 or so patients and demonstrated it on stage with two of his patient volunteers. The APA regarded him with a big ho-hum.

  1. “Action platforms like these may connect with each other in movements that aim to help psychiatry to modernise such as htttp://www.madinamerica.com. Although some of the content at madinamerica.com may be considered ‘anti-psychiatric’, service users sometimes argue that elements of psychiatric practice may be considered ‘anti-patient’. In other words, there is a need for a dialectical debate where the consideration of the extreme opposites allows for unbiased ‘truth’-finding in the middle.”

    This is called the ‘argument to moderation’ and it’s an astounding sight to see a logical fallacy written into a scientific research paper as if it were a noble goal to take a centrist approach rather than boldly search for the unbiased truth despite the social, political, and scientific ramifications of the eventual findings. Way to go on deligitimizing both ‘psychiatric’ ‘science’ and MIA as a publication grounded in science.

    Drop the disorder!

  2. There is already a medical name for “psychosis” created with the “antipsychotics” and “antidepressants.” It’s called anticholinergic toxidrome, or the central symptoms of “anticholinergic intoxication syndrome.”

    https://en.wikipedia.org/wiki/Toxidrome

    From drugs.com:

    “Agents with anticholinergic properties (e.g., sedating antihistamines; antispasmodics; neuroleptics; phenothiazines; skeletal muscle relaxants; tricyclic antidepressants; disopyramide) may have additive effects when used in combination … [and] may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

    Although “psychosis” can also be created via sleep deprivation, or with other street and pharmaceutical drugs, like steroids. But, again, none of these etiologies of “psychosis” is a “lifelong, incurable, genetic mental illness.” As the psychiatric industry fraudulently claims, has and is wasting billions in taxpayer money trying to unsuccessfully prove. Because the psychiatrists wish “psychosis” was a “lifelong, incurable, genetic” illness.

    But “psychosis” is not a “lifelong, incurable, genetic” illness, so there really is no need for a PSD label. And what’s good is if we could get the doctors and psychiatrists to stop prescribing their beloved antipsychotic/neuroleptic and antidepressant “wonder drugs,” we could likely prevent the worst of our society’s “psychosis” problems.

    Changing the names of the drug classes or illness classes does not change the reality that the psychiatric drugs create “psychosis,” via anticholinergic toxidrome.

    • I wouldn’t be in favour of replacing the term “schizophrenia” I would be in favour of getting rid of it. I would be in favour of getting rid of the term “psychosis” as well.

      (30 plus years ago, I was diagnosed as chronically “schizophrenic” until I stopped taking “medication” suitable for “schizophrenia” – but I had to come off the “medication” very carefully).

  3. Please sign and circulate my petition to the WHO & APA to drop the scientifically challenged and highly stigmatizing term “schizophrenia”
    Brian Koehler PhD, MS
    New York University & Columbia University

    https://www.madinamerica.com/2017/12/apa-drop-stigmatizing-term-schizophrenia/

    https://www.change.org/p/american-psychiatric-association-apa-drop-the-stigmatizing-term-schizophrenia/nftexp/ex35/v4/644737274

    Spanish translation thanks to Ana Sofia Rodriquez from Mexico:
    https://discapacidades.nexos.com.mx/?p=65

    • That’s a VERY good start, Brian.
      Now, let’s get the APA to do *2* more things:
      1. Afiirm that there will be NO “DSM-6″….a “DSM-5R”, or “DSM-5TR” would be ok…..
      2. New memberships in the APA will CLOSE/END, effective immediately…..
      Those 2 simple, and easy-to-do acts would be a bigger boost and boon to public health than anything else I can think of….
      The whole “mental illness industrial complex” would be largely unchanged, but dramatically improved.
      Think about it….

  4. As much as I appreciate psych professionals who are more willing to admit the limits of current knowledge and are also attempting to make life for the psychiatry-ized more bearable…

    “schizophrenia” is a necessary fiction in psychiatry. I seem to recall Szasz writing an entire book about it, calling it The sacred symbol of psychiatry, something to that effect. My best guess is that the professionals in other nations have renamed their sacred symbol to protect their profession from further scrutiny and deconstruction, while (re)building a pretty facade of scientifically-informed “care” and compassion. Another personal guess, right off the top my head, is that the psych professions in those nations are operating in cultures that are less punitive, more tolerant, not as anomic as, say…

    much of 21st century America.

  5. I hear all of the wonders that will happen from the renaming, but frankly, I do not believe one bit of it. It is still reducing a vast amount of life experience to a spectrum. Life’s experiences owe a more complete description, and from the experiencer, not a doctor, please.

  6. What are they going to call it?
    Someone put an orange in their pocket and came to us very disturbed and needed to come back to us was determined, but he had such a reaction to our terminology that with or without us changing the definition we will rename it as something else, although it still stays the same:

    1) It’s still a disease, but considering that it’s not believed to be so, we’re blaming it on the old name.
    2) When in doubt try another Anthem
    3) If this doesn’t stick, we’ll try for a third

    • I try to imagine a world where physical diseases are labeled and stigmatized the same way distressing emotional states and behaviors are. Wouldn’t it be the literal definition of crazy if you went to the doctor with a broken leg and were labeled with painful disconnected bone disorder and chastised for your refusal to stand on it?

      Though not everyone realizes it, physical diseases are named in ways that describe the disease process, usually using Latin or Greek root words. Diabetes Mellitis is a good example. It is so named because it makes the body’s fluids (blood and urine) sweet.

      Schitzophrenia is an incredibly outdated term that bears no relation to the person’s distress. In fact, it’s Greek origins ‘schizo’ means “split” and ‘phrene’ means “mind”. This could more accurately be the name of MPD/DID. It doesn’t reflect the many different causes of disconnection from reality.

      Additionally, there is little evidence of a unique disease process. The medical research community does not consider it a single disease process or even a disease process at all, but rather a cluster of disorders (at least 8), perhaps more. There’s no evidence base for current long term psychiatric (meaning medication) treatment for this non-disease, regardless of whether the patient has fresh fruit in his pockets or thinks he’s Jesus.

      The harsh western medicalized treatment of the many presentations of distress labeled as schizophrenia is a miscarriage of justice and a malpractice of medicine. And it’s truly hard to believe there are providers out there still ruining people’s lives by labeling them with what is culturally thought to be practically a death sentence for the mind.

      I am with the others saying to drop the labels altogether. Medicine is doing more harm than good with these labels and treatments, disabling people for life and calling it “treated”. It’s truly shameful and shocking that this is still going on all around the country and indeed around the world. The only way this makes sense is because of the massive profits being raked in by the pharma-mental-treatment industry that is largely being funded by taxpayers, through the fraud of Medicare/Medicaid payments, which constitutes an organized effort between the American Psychiatric Association, Pharma, and multiple us government agencies.

      There is currently a RICO (organized racketeering) lawsuit that was just allowed to move forward in Texas on behalf of Lyme disease patients against the IDSA and multiple insurers, and this may be a strategy that survivors of psychiatric harm consider using considering the known coordination between industries in the psychiatric field. Dollars for Docs anyone?

      Food for thought for those questioning the labels and treatments.

      • How awful to stand, on your own refusal, and sink in the snow from dead weight, and see it happening all the time, the medical profession, the ssssSSSSSilence, the words on this screen, Anything EVERYTHING!

        Totally what everyone completely knows and says nothing about..

        Yeah no disconnection from a prism of anything noticed, from all of their accomplished prophecies.

        Tried the fresh fruit myself and ended up leaving the P’lace with S’our cream.

        Ahem

        The potatoes might be ready by now!

  7. “Schizophrenia is associated with “insanity, hopelessness, desperation, violence, stigma and discrimination,” negatively impacting those individuals diagnosed, their family, and service providers”

    This not just true for “schizophrenia” but also the other made up conditions psychiatry have come up with and I am not sure that renaming it will change anything. Psychiatry must come out and say that they have been misleading the public and change can start there

  8. Instead of calling it “sinking,” let’s call what happened to the Titanic “assuming a lower floating equilibrium.” That way, everyone will feel better as they go under.

    What the heck difference does it make if it’s renamed? Do we have to “gain consensus” before we decide whether cancer is an illness? If “schizophrenia” is decided NOT to define a “disease” category, why would you rename it instead of just tossing it out?

    Or maybe we can rename each person’s experience without forcing them all into a category – maybe ask the client him/herself what name seems most appropriate to them? But then where would the research money come from, and how could we justify drugging if every person’s needs are different and can’t be categorized?

  9. But if vampires don’t exist what will Buffy and Van Helsing kill?

    Seriously the fact that you can make diseases magically disappear or transform them into something else lends credit to the notion that “mental illness” is indeed a social construct. Can doctors vote cancers into existence? Or turn melanoma into liver disease with a stroke of the pen?

    There are groups of writers, educators and editors that assemble to vote on expressions and rules of grammar for proper writing. What I read in They Call You Crazy reminded me of those groups.

    But everyone acknowledges the language experts’ efforts are social and artistic–not hard science. And they don’t have the power to lock you up, publicly shame you, or operate on your tongue for bad grammar.

  10. Drink the Kool-Aid y’all. This whole blog has actually been a behavioral experiment to see how many people would join a contest to “rename” something that doesn’t exist.

    Considering the time of year, this makes me nostalgic for past debates on MIA about what the Easter Bunny “really” is. Dragonslayer, you up? 🙂

  11. I think the labels and names only have any power when they break the linkage from cause to effect. The evil in them is that the cause is absolved of responsibility. The victim bears the dishonor of the damage, instead of those who caused it.

    • Exactly. That’s why I believe in many ways the labels are far more destructive than the drugs they prescribe. The labeling alters social perceptions of the PERSON who is so labeled, and alters our attitude toward trauma – it moves from compassion to “let the victim beware!”