Selective quotes taken out of context do not benefit our understanding of serious and persistent mental illness. So, imagine my surprise when I discover that the Mad in America people are using an academic paper by Dr. Robert Zipursky of McMaster University as proof of the evils of antipsychotic medication. Their website states "decreases in brain tissue volumes are attributable to antipsychotic medication, substance abuse, and other secondary factors. The authors conclude that the majority of people with schizophrenia diagnoses have the potential to achieve long-term recovery."
And, one of the comments on the site states "Thank you for finding these studies -- for helping build a catalogue of research on MiA -- one that helps dispel the 'myth' of biospsychiatry." MiA is Mad in America. I happen to know Zipursky and even quoted him in my own book on the need for medication in schizophrenia so I was intrigued.
I've now read his paper in its entirety and he is not advocating against medication use. In fact, the paper says "with appropriate care, including the skillful prescription of antipsychotic medication, the early years following a FEP (first episode psychotic break) are not typically periods of decline but rather of substantial ongoing improvement in symptom severity and functioning." About 70-74 per cent of patients achieve remission in the first year.
He then states that the rates of remission up to nine years of follow-up is 78 per cent but that for those who discontinue medication early, the relapse rate is up to 78 per cent compared to 0-12 per cent for those who remain on medication.
The paper differentiates between remission (the reduction of symptoms), functional recovery (an adequate level of social and vocational functioning, capacity for independent living and social interactions at a regular frequency) and recovery. Recovery, he says, has had many definitions for schizophrenia but he uses it to mean levels of social and vocational functioning within the normal range and with the remission of symptoms.
Functional recovery can be achieved, the paper states, by about 40 per cent of people while recovery can be achieved by about 17 per cent. So, 60 per cent do not even achieve functional recovery and 83 per cent do not accomplish full recovery. The paper suggests that clinical deterioration is not inevitable but is the result of nonadherence (to medication) and the resulting relapses but also to factors such as poverty, homelessness, unemployment and lack of social support as well as other co-morbidities that complicate.
As for brain deterioration, he does state that MRI studies show significant brain volume reduction in chronic schizophrenia and in patients presenting with first episode psychosis and schizophrenia. Those changes seen in patients at first episode are developmental changes in the brain. The changes in the brain are present initially before any medication has been given. And, he points out that changes in brain volume are also caused by cannabis and tobacco use for everyone. Those with schizophrenia smoke more than those who do not. A sedentary lifestyle and stress in everyone also results in reduced brain volumes again, regardless of antipsychotic use.
That these medications cause brain changes should not be of any surprise. As Dr. Fuller Torrey states, "It is important to study the brain changes caused by antipsychotic drugs, since this may tell us how these drugs work and/or predict which individuals are more likely to experience side effects." He also points out that this effect is not unique to antipsychotics as structural brain changes are also caused by drugs used to treat Parkinson's disease, epilepsy, and other brain diseases.
What was truly interesting in this study was the reference to the Clinician's Illusion by Cohen and Cohen. Psychiatrists often have an overly pessimistic view of schizophrenia simply because the ones in their practices are the ones who are doing the worst. They then commit the fallacy of attributing these poor outcomes to all who suffer with schizophrenia. The same could be said of those who espouse anti-psychiatry views and believe that all who suffer can recover without medications. They see a small segment of the total but attribute the potential achieved by them to all.
As this paper says "schizophrenia is not a discrete illness with a single cause or course, rather it appears to be a syndrome with multiple interacting causes, both genetic and environmental, and a heterogeneous outcome."
The Mad in America comments on this article state "the majority of people with schizophrenia diagnoses have the potential to achieve long-term recovery." What this paper actually said in the abstract is "most people can achieve a substantial degree of recovery." There is a difference between "long-term recovery" and "a substantial degree of recovery."
Why more do not achieve recovery is stated in the paper and, for me, is key: "Sadly, many people with schizophrenia do not have access to the skilled mental health services and social supports that are needed for them to achieve recovery and a good quality of life."
In a phone interview with me, Zipursky reiterated the need for medication which he described as "critical" for anyone with schizophrenia. Medication is needed, he said, for life so that the person with schizophrenia can remain well. And, he was a bit surprised that his paper was being used to refute the need for medication. It is important for all (consumers, family and professionals) to have a shared understanding of all the facts.
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My attempts to understand some of what I with this illness experience started off several years ago with a metacognitive approach...
From lingforum.com
Post subject: Speech perception and some symptoms of schizophrenia
http://www.lingforum.com/forum/viewtopic.php?t=512
Stefan Andersson
Instead of defending "models", we would do better to think of the biomedial "approach" and recovery "approach" as complementary. The biomedical appoach emphasizes medications, but includes social supports such as housing and supported employment. Its major deficit is its reductive pessimism, its tendency to see only an illness and a diagnosis, to see "a schizophrenic" instead of seeing a whole person with all his or her individual needs and dreams.
The recovery "approach" is the necessary outgrowth and complement to the biomedical "approach, because for most people, it includes taking medications, but goes beyond meds to emphasize the whole person. It replaces pessimism with hope for recovery of a qualtiy of life, which surely everyone can agree is a good thing. I've never heard anyone with schizophrenia complain that they were offered too much hope!
However, a major deficit of the recovery approach is its failure to see the needs of a person who is unable, by virtue of a mental impairment, to make informed choices in their own best interest.
So let's stop debating a false dichotomy of "biomedical" versus "recovery" and apply ourselves to recognizing that neither of these approaches is adequate in itself, and to synthesizing the best these two approaches have to offer.
No, it's not news. I remember reading at least a decade ago that schizophrenia is not progressively neurodegenerative -- as was historically thought. However, in spite of evidence to the contrary, there are clinicians and neuroscientists who continue to believe it is progressive and leads to chronic social incapacity. Dr. Zipursky's paper provides the evidence to dispell this myth.
It puzzles me that some professionals remain pessimistic. I might speculate that one reason is that some clinicians only see people who are doing poorly and don't see people who have recovered a quality of life. If so, they certainly need to get out more....and hopefully they'll read Dr. Zipursky's article.
I didn't say in my previous post that recovering some cognitive functions is "all we can hope for". Research about brain plasticity and the effectiveness of cognitive therapies do offer hope for people who have experienced cognitive loss. But of course, there's a lot more to hope for!
Many individuals and families have been seeing for years that the majority of people with a diagnosis of schizophrenia have the potential to achieve long-term remission and functional recovery. My own family member manages bothersome symptoms with a low dosage of medications and a high level of family support. He has graduated from university and is now employed in the professional field of his choice. We know that he is only one of many!
Certainly it is a fact that social functioning deteriores without treatment, and some go on to acquire other terrible diseases such as AIDS and Hepatitis C. Who does not want recovery, stabilization, etc., and, above all, better scientific knowledge to enable decent care and improved treatments? The default into the prison system instead of healthcare tells of a serious policy failure. Some of the policy failure is a result of excessive politically-correct talk, while failing to deliver appropriate medical care. First and foremost, a good step would be to address the serious nature of these brain diseases and provide early medical care. Patricia Forsdyke.
Thomas Insel, MD, director of the U.S. National Institute of Mental Health, has stated “Treatments, especially pharmacological treatments, have been in wide use for nearly half a century, yet there is little evidence that these treatments have substantially improved outcomes for most people with schizophrenia.” This statement appears in the first paragraph of this NIMH director’s blog post. http://www.nimh.nih.gov/about/director/publications/rethinking-schizophrenia.shtml He also states, “Although both conventional and atypical antipsychotics reliably reduce delusions and hallucinations, they have not enhanced functional recovery (for example, employment) for people with schizophrenia."
On the other hand, psychiatrist William Glasser, who liberated back ward schizophrenia patients and helped them reintegrate to successful life in the community has stated, “Everyone who needs psychiatric treatment suffers from one basic inadequacy: He is unable to fulfill his essential needs – respect and relatedness.”
Perhaps a safe and nurturing environment would go a long way in helping a homeless person “stabilize.” Famous homeless musician Nathaniel Ayers (The Soloist) refused psychiatric treatment, but we was helped immensely by the friendship of people like Steve Lopez and Robert Gupta. http://www.ted.com/talks/robert_gupta.html Robert Gupta explains how, for Nathaniel Ayers, music is medicine, music is sanity.
Some especially intriguing highlights:
“these [brain tissue] decreases are explicable by the effects of antipsychotic medication, substance abuse, and other secondary factors.”
“The majority of people with schizophrenia have the potential to achieve long-term remission and functional recovery.”
Marvin attributes these statements to Mad in America. In fact, the statements appear in the first paragraph of Dr. Zipursky’s paper. http://schizophreniabulletin.oxfordjournals.org/content/early/2012/11/20/schbul.sbs135.full.pdf+html
What DID appear on the Mad in America site was a very brief (one short paragraph) summary of the abstract for ”THE MYTH OF SCHIZOPHRENIA AS A PROGRESSIVE BRAIN DISEASE” along with a link to that abstract. http://www.madinamerica.com/2012/11/22141/ As anyone can see, no “selective quotes” were taken out of context.
In the first page Dr. Zipursky’s THE MYTH OF SCHIZOPHRENIA AS A PROGRESSIVE BRAIN DISEASE, http://schizophreniabulletin.oxfordjournals.org/content/early/2012/11/20/schbul.sbs135.full.pdf+html
we find the statement “many clinicians and neuroscientists still consider it to be a progressive brain disease that leads to chronicity and social incapacity.”
In answer to my own (rhetorical) question about what is schizophrenia, Dr. Zipursky states in THE MYTH OF SCHIZOPHRENIA AS A PROGRESSIVE BRAIN DISEASE,
“etiological and clinical research suggests that schizophrenia is not a discrete illness with a single cause or course, rather it appears to be a syndrome with multiple interacting causes, both genetic and environmental, and a heterogeneous outcome.”
Further, Dr. Zipursky states in the abstract:
“The majority of people with schizophrenia have the potential to achieve long-term remission and functional recovery.”
This sounds quite a bit more optimistic than merely regaining “some cognitive functions.”
To my reading, Dr. Zipursky is not saying that schizophrenia is not a brain disease. Rather, he's saying it's not a PROGRESSIVE brain disease -- as was once thought.
This is not news. For at least a decade, brain research has shown that the brains of people with schizophrenia do not progressively deteriorate after a psychotic break. Although any people do experience some cognitive loss (loss of memory and ability to concentrate are common) with a psychotic break, these losses tend to plateau at some point rather than continuing to get progressively worse.
But brain research news gets even better than that! Not only does the brain not necessrily get progressively worse, but new knowledge about the plasticity of the brain shows that the brain has the capacity to heal itself at least to some degree.
So many people with schizophrnia can regain (dare I say RECOVER) some cognitive functions, such as memory and ability to concentrate, especially if they participate in Cognitive Remediation Therapy.
That's why we should all be advocating for cognitive therapy to be available to everyone after a psychotic break.
You are describing what cognitive loss sounds like to YOU. ("... like they have suffered traumatic brain injury in a car crash" and " left parts of their brain on the highway.") Wow! I appreciate your vivid imagination, but Good Grief!
I use the indefinite pronoun "some", as in "many people with schizophrenia can recover 'some' cognitive functions" because everyone is an individual, so how much cognitive recovery takes place with cognitive remediation therapy will not be the same for everybody. I'm just using 'some' to avoid implying it is a fixed amount.
And no, CRT is NOT "the best I can hope for! I limited my comment to cognitive loss and cognitive recovery because that is the topic of my post in response to Athena's question. Of course, I know there is more to recovery than CRT! Most thoughtful people realize that recovery of a meaningful and fulfilling life involves the whole person and necessitates a multi-dimensional approach: bio-psycho-social-spiritual... The whole person includes a brain, so of course brain research is pertinent.
In my experience, people aren't "put into CRT". That therapy is offered to them only if they choose to participate. If it helps them (as many people with lived experience say it has), then as a Mom, I say, let's make it available to them!
Rossa, I'm sorry you had to endure a pessimistic doctor. I sincerely hope that you and your son find what truly helps him.
I read it with great interest. In the abstract, I found this especially compelling statement -
"Mental Health professionals need to join with patients and their families in understanding that schizophrenia is not a malignant disease that inevitably deteriorates over time but rather one from which most people can achieve a substantial degree of recovery."
So if Dr. Zipursky is correct that schizophrenia is not a progressive brain disease, then what is it?
Marvin Ross's clarification of so many misleading public statements about schizophrenia is a public service to families and others who are determined that more real science must be brought to bear on serious mental illnesses,
It would be helpful to know if there are any scientific studies on the microbes that we already have uncovered ( like the one at the root of mad cow disease ) which can disable brains after skulking in our bodies for many decades before their scheduled onslaught on the brain causes dementia.
(A personal note: I have become painfully aware of this ability of microbes to lay in wait and strike again years later. My virus-caused childhood chicken pox has just returned to plague me with the dreaded Shingles after more than 70 years.)
There are plenty of helpful reader friendly books in libraries and bookstore on this phenomenon. I would start with Jay Ingram's "Fatal Flaws: How a misfolded protein baffled scientists and changed the way we look at the brain.
Here's to new scientific discoveries!!
http://www.iarecovery.org/documents/open-dialogue-finland-outcomes.pdf
What do you think of this promising treatment model, June? Is there any reason why we should not be using it here in North America?
Talk about sensationalism on the part of Marvin Ross! The MIA site provides a service to its readers by posting the latest research studies in its "In the News" column, with a brief summary of the abstract that is found in the link. Mr Ross pounces on a MIA reader’s comment to the abstract as proof positive that MIA is against the use of medications in the treatment of schizophrenia. He even telephones one of the authors of the paper to alert him to the “false inferences” that others are supposedly attributing to the paper, while at the same time spreading falsehoods about what the reader whose comment he quoted may actually have intended to say.
“Second, MRI studies demonstrate subtle developmental abnormalities at first onset of psychosis and then further decreases in brain tissue volumes; however, these latter decreases are explicable by the effects of antipsychotic medication, substance abuse, and other secondary factors.”
That some want to throw the baby out with the bathwater is truly chilling. Antipsychotic meds are the only chance many of these patients have to achieve some sort of remission.