The angry letter from a distraught mother that I published Monday has set off a lively debate. Yesterday, I reported that the woman’s son has voluntarily admitted himself into the hospital and is meeting with his family. I also explained my views about Robert Whitaker’s appearance at NAMI’s national conference. Today, Robert Whitaker published his response to the angry mother on his own website. I asked if I could reprint his words here because I think it is only fair, after the angry attack in Monday’s blog, to give him the same auidence that Angry Mom had. He graciously agreed to let me reprint his post.
My Reply to Pete Earley: Do I Have Blood On My Hands?
By Robert Whitaker
Since I spoke at NAMI’s national convention last month, the writer Pete Earley has invited people who listened to my talk to send him their reports of the event. Earley wrote a book titled Crazy, which was both about his son’s struggles with mental illness and the criminalization of the mentally ill, and in his book and other writings, he has told of his frustration with laws that prevented his son from being forcibly medicated. Yesterday, on his website, he published a letter from a mom who attended my talk with her adult son, and she told of how, after returning from the meeting, her son apparently abruptly stopped taking his medication and has now gone missing.
In her letter to Earley, she blamed both me and NAMI (for inviting me) for this bad turn in her son’s life. “In my heart, I wish I could hold [Whitaker] and NAMI legally responsible for what is happening. They gave an alcoholic a bottle of whiskey for Christmas and asked him to join in a toast . . . I damn them (NAMI and me) and if my son ends up dead, I believe his blood should be on their hands.”
Earley then put this headline on her letter: “Mother Condemns NAMI and Whitaker: Blood on Their Hands.”
That is quite the letter and quite the headline. To accuse someone of having “blood on their hands” is to accuse them of something akin to murder. It is a headline asserting that I now bear culpability for whatever bad may happen to this unnamed son. This is now my fault, and NAMI’s. Many readers wrote in to express their support for the mother, and how irresponsible it was for NAMI to have invited me.
I, of course, can only hope and pray that harm does not come to this mother’s adult son. But, as I thought about this letter today, and Mr. Earley’s headline, I saw this reason to publicly respond: Who has really failed her son?
Here is the framework for thinking about that question. Should we, as a society, discuss what science tells us about psychiatric medications, or should we, for some reason, keep that discussion from public view? That may seem like a rhetorical question, but, in fact, much of the science that would lead society to question the merits of antipsychotics has in fact been kept from society in the past, and in essence, Earley, with this headline, is urging that to remain the case. The general idea is that discussing such information, particularly in the presence of people who take antipsychotics, is dangerous, because it can lead people to decide to stop taking the drugs, which in turn can lead to a bad outcome.
But here is the other side of this “culpability” question: If we, as a society, had discussed such information in the past, would we now have treatment protocols that provided this man—if he had wanted to stop taking medication—support for doing so in a gradual manner, with his reactions to that tapering program carefully monitored? If that is the case, then what is irresponsible is to avoid discussing the science in the first place, because we then fail to provide an opportunity for someone who wants to taper from the medications to do so in a manner that minimizes the risk and maximizes the likelihood of a good outcome. The lack of discussion leaves the individual isolated and alone as he/she tries to think about what to do.
My presentation at NAMI was titled “A Case for Selective Use of Antipsychotics.” You can see in the title the point of my presentation: It is stating that science is telling us that the best use of these drugs would involve using them in a selective manner (i.e. in a way that sorts out who benefits from them and who can do okay without them.) It is an argument for amending our current drug-use protocols, which emphasize continual drug maintenance for all patients with a diagnosis for a psychotic disorder. Instead, we would use them in a way that science tells us could markedly improve recovery rates.
You can see my NAMI slides here. Readers can see that basically what I do in the presentation is this: I review the extensive evidence, stretching across fifty years of research, that supports two conclusions. The first is that there is a significant percentage of first-episode patients who, if they were provided with psychosocial care (and possibly made use of benzodiazepines for sleep purposes), could recover from a psychotic episode without being exposed to antipsychotics, and that this group could then be expected to have favorable long-term outcomes. The second is that there is a significant percentage of patients who, after being stabilized on antipsychotics, could then successfully withdraw from the drugs and do fairly well off them long term. However, that still leaves a place for prescribing the drugs: They could be used to help some patients recover from an initial episode, and they could be continually prescribed to those patients who can’t seem to do well off them.
As readers can see from the slides, I didn’t speak about the many adverse effects of antipsychotics, or how they have been found to cause a reduction in brain volumes over time. I focused instead on the abundant evidence that a selective-use protocol could lead to better overall outcomes, and higher recovery rates.
Now it is noteworthy that shortly after I spoke at NAMI, Lex Wunderink published his studyshowing that at the end of seven years, first-episode patients who had been stabilized on antipsychotics and were then randomized to a treatment arm that involved “guided discontinuation/reduction” of antipsychotics had much higher recovery rates at the end of seven years than those maintained on antipsychotics at a standard dose. Wunderink’s article in JAMA Psychiatry was accompanied by an editorial, written by Patrick McGorry, stating that it was time for psychiatry to rethink its use of psychiatric medications, with the expectation that they would be used more selectively, “now that we are armed with stronger evidence to counter poor practice.”
In essence, the editorial endorsed the very conclusion I made in my presentation at NAMI.
The public is often surprised to hear of research that tells of people diagnosed with a psychotic disorder who are doing well without medication, and there is a reason for that. Such information has been kept from the public (and to a large degree, out of psychiatric textbooks.) When Martin Harrow published his findings that schizophrenia patients who had stopped taking antipsychotic medication had much higher recovery rates over the long term than those who stayed on antipsychotics, the American Psychiatric Association didn’t publicize his results and neither did the NIMH. As a result, no newspaper reported on this startling outcome, even though we can be sure that if the results had been the reverse, the APA, the NIMH, and the manufacturers of antipsychotics would have trumpeted this finding to the media.
I should also note that NAMI, having invited me to speak, arranged for a followup session where people who used the medications could talk about what they had heard, and my understanding is that many at that meeting spoke of how they felt that antipsychotics helped them. So NAMI, having invited me to speak, provided people with a way to think about such information, without seeing it as a prescription for guiding anyone’s individual care. I don’t see how the organization could have handled my appearance in a more responsible manner.
I am now thinking about the mother’s adult son. I do believe that we, as a society, failed him. And I say that—that as a society we failed him—because psychiatry is an institution that is part of our society, and for the past 50 years, psychiatry has not communicated research results that question the merits of psychiatric drugs freely to the public. Furthermore, the public has not insisted that psychiatry freely discuss such information. You can see that impulse to suppress such information on display here: Pete Earley, with this headline, is saying that it was grossly irresponsible of me to have presented such research findings in that forum. I have “blood on my hands.”
What has been the result of that suppression of information? We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many. And the absence of such support may put a person—such as this mother’s adult son—into a perilous place when they do, in fact, learn of such information.
In 1976, Jonathan Cole, who had been the head of the NIMH’s Psychopharmacology Service Center for many years, and who had personally conducted some of the early seminal research on antipsychotics, co-authored an article titled: “Maintenance antipsychotic therapy: is the cure worse than the disease?” He then made this plea:
“The major principle we wish to stress is that every chronic schizophrenic outpatient maintained on antipsychotic medications should have the benefits of an adequate trial without drugs.” Cole concluded, after his review of the scientific literature, that “the proportion of such patients” that could do okay without antipsychotics “may be as high as 50%.”
His voice was not heard then. And now here we are, 37 years later, and still we, as a society, are still struggling to hear such thoughts.
About the author:
More research needs to be done on anti-psychotic meds, and on brain disorders in general. Until then, it is too risky to promote going off antipsychotic meds to a large audience. If this decision is made, it should be between a patient and their doctor, only. Even then, it can have tragic results. Last year I read of a case where the mother and adult son worked with the doctor to titrate the son, very gradually, off his antipsychotic meds. Each week, the mother wrote updates about the progress, and it sounded encouraging. Then there were no updates. Two months after the posts stopped, she finally posted again. Her son, having been off his antipsychotic meds, killed himself violently, while the parents were home. This mom now feels such guilt about agreeing to let her son go off his meds. She did what she thought was best for him, and did it in a very responsible way. Still, the consequences were tragic.
Let me state it again: If a person is considered by his psychiatrist to be able to reduce or eliminate meds, it is between them. This should not be publicly promoted, as there are people who are not well enough to understand the need to include their psychiatrist in this choice. In my opinion, this type of speech promotes dangerous and reckless behavior and should not be covered by the First Amendment.
I do hope the young man gets the help he needs, and that the family has the support they need. My thoughts are with them…..
Thank you for proving to everybody that you all here are just about taking away Whitaker’s first amendment rights and the rights of the people labeled ‘mentally ill’ to choose.
I dont no what you are talking about there is blud tests nowadays please stop telling lie
My thoughts are with the family too. Schizophrenia is a brain disease they have brain scans for it nowadays. These people cannot be trusted to take their medication. I tried to call the police on my son and it took a long for us to get him put in hospital. Things need to change I hope NAMI stops this man sending out these bad messages to our kids.
I know because my uncle has this disease and it is so true. If you ever saw my uncle you would agree.
Based on Mr. Whitaker’s post and his “no-drug” mantra, I am betting he has neither a child who lives with a serious mental illness nor does he live with one. Because if he did, he would understand that when a person experiences a psychotic episode, there is no reasoning with that person.
He is correct in stating, “We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many.” But this statement suggests that you can convince a person in a psychotic state to do something– anything in a rational manner.
Parents who have contributed to our Behind The Wall project will tell you about incidences where they tried to convince their son or daughter to get into talk therapy, or taper their drugs off instead of going cold turkey. Guess what? They don’t listen.
I don’t know about Robert Whitaker but I can tell you that my dad was “Peter Earley like” and the end result has been me losing all contact with him and the rest of my entire family. I was detained (as if I had been a criminal without being one), and psychiatric drugs were forced into me that almost destroyed my kidneys and my liver. I was told that I was “destined to become homeless” because “OCD is a very debilitating disease”. Guess what, many years later, I do not take any psychiatric drugs, and I have a higher standard of living than when my contact with psychiatry happened; only my social life has been ruined. I am now divorced and with no contact with parents/siblings. My social life is also very toxic because of what happened. I have NOTHING but contempt for psychiatry, NAMI, and people like Pete Earley and you. Your own children will hate you when they are old/mature enough to understand the abuse they have endured at your hands.
I’m so sorry that happened to you and I’m glad you were one of the fortunate ones who can succeed without the use of medications. Unfortunately there is a small percentage of very ill people who cannot. We have to accept that not all people have the same diagnosis or outcome, and entrust the care of people with complex brain disorders to the experts and people involved with the treatment of a loved one. Some times things don’t work out very well as you stated above, sadly. I would ask you to consider not painting a broad brush over other foks based on your own experience. That is what I feel Mr. Whitaker has done with his “research” findings, unfortunately.
Mmmm, evidence (of the scientific type, not fairy tales) to sustain that “there is a small percentage of very ill people who cannot” or that there are genuine “people with complex brain disorders”????, because as I said below, the director of the NIMH and the chairman of the DSM-5 are now both on record saying that there is no evidence that any of the invented so called “mental diseases” have any biological origin. If by “complex brain disorders” you mean a metaphor for people who go through extreme mental states, then all I can say is this: their true liberation will only arrive the day they say NO to psychiatry even if that means sending their own family to hell as I did with mine. End of the story.
BTW, just ask the family of the late
Rosemary Kennedy how it went for her to trust ” the experts and people involved with the treatment of a loved one”. And viceversa, ask John Nash how people can dramatically improve after sending one’s spouse to hell (spouse who conveniently came back to him when winning the Nobel prize became a possibility). You are all equally pathetic the NAMI “moms”.
The people you declare are allegedly ‘ill’ and who ‘cannot live’ without toxic drugs, are people who should stop listening to people like you.
You sound like you might be one. What do you mean toxic drugs? It is like insulin for diabetes and they have brain scans now. You are wrong Special.
As far as we know, there is no scientific evidence, including brain scans, that shows psych drugs to be like “insulin for diabetes.” One basic way in which this metaphor falls apart is that Insulin naturally occurs in a healthy human body. Neuroleptics do not. Insulin can be measured in the blood, brain chemicals cannot. Insulin resistance is directly responsible for diabetes, and even the most reductive brain scientists no longer believe in the “chemical imbalance” theory of mental illness. These are phenomena, like all human behavior, which are tied up in life long patterns of thought, experience, and neuronal development.
You may have been misled about this, dear Deborah.
It is the dopamine that is wrong with my son’s brain. Such a terrible brain disease. I hope they can find a cure for it with the researchers yes.
Really? What’s the blood, or otherwise biological, test to measure the “level of dopamine” in the brain. Where is it? It would be a great medical advance. Without said test, talking about “imbalance” in the dopamine system is as “scientific” as if I were to claim that waves created by unicorns in Mars are responsible for whatever behavior your son has that you don’t like. Pathetic NAMI mom.
Just look at the research are you a doctor? The doctor said and there is also lots of research you are ignorrant
Indeed, I have review the research. And I agree with Tom Insel, to this day there isn’t a single biomarker that has been reliably identified as the cause of any of the DSM invented “diseases”. None of those “promising studies” have been replicated because they suffer of “selection bias”. But what do I know, I am scientist. You are just a “NAMI, clueless, mom”. The poster example of the lack of scientific literacy that affects the majority of Americans.
I know I would love to look at the research Deborah! Please post links.
What is this project called? I may have to look into it. My son is a Schizophrenic and these people can’t be trusted to take their medications. You are right they don’t listen they are not rational people we need to stop people like this man giving a speech at the NAMI.
Yes, the decision to medicate or not to medicate is made even more complicated by the lack of outpatient community mental health centers, mental health peer support services, family education and support services and insurance companies that pay for inpatient and outpatient services based on a diagnosis. I tend to question a person’s logical faculties when he/she is in the depths of a psychotic break. Information about recovery options can be a dangerous thing for a person without the capability to sort out what is and isn’t in his/her best interest. This is what makes treating mental illness so difficult because the brain is too sick to help a person understand the fundamentals of what is happening to them.
Terri
‘the brain is too sick’? Can you provide us with anyone who got their brain tested and proved to be ‘sick’? Or are you just an ideologue who believes in quackery?
My son got the brain scan to prove there is something wrong with his dopamine so its not quackery who are you talking about.
Terri,
The issue is that when a person has any type of “MI” label, they are treated as kids incapable of making fully informed decisions. Additionally, what many mental health professionals label as being in someone’s best interest is really an issue of the him/her disagreeing with the patient’s treatment choice. I am not saying you are doing that but just trying to point out what I feel occurs quite frequently in the MH field.
These drugs made me nothing but sick for years.
All psychiatric drugs cause withdrawal reactions, including the antidepressants, stimulants, tranquilizers, antipsychotic drugs and ‘mood stabilizers’ like Trileptal. Then when the individual’s condition grows markedly worse within days or weeks of stopping the psychiatric drug (cause of side effects or feeling like a zombie) this is almost always due to a withdrawal reaction. However, misinformed doctors and misled parents, teachers and even patients think that this is evidence that the individual ‘needs’ the drug even more, when in fact he or she needs time to recover from withdrawal effects.
Type the name of ANY psychiatric drug into a search followed by the word withdrawal and read the horror stories and notice the lack of information on HOW to withdrawal from these drugs.
Psychiatry has hurt to many people and better change its ways.
Don’t even get me started on the rights violations behind locked doors these people call “treatment”.
Your dopamine part of you brain has a problem and you need to accept this.
Deborah, you’re very close to diagnosing and giving medical advice here. Are you a doctor? And even if you are, you weren’t asked for neither a diagnosis nor medical advice, so your giving both here is actually not in alignment with the ethical standards of the medical profession. If you want to believe in the chemical imbalance bs, which psychiatry itself these days admits was nothing but a “metaphor”, that’s your problem. But you may want to stop telling others what, in your opinion, is wrong with their brains, and what, in your opinion, they need to do, when your opinion on both wasn’t asked for.
Its always people who have never taken these drugs who push them.
Who really lacks insight ?
I will remember that the next time I have to bail my psychotic son out of jail when he is off his meds! Let him stay in jail- medication free-its up to him! Yeah! Why should I spend my money on lawyers just because the pro bono attorney doesn’t believe in mental Illness? Why should I worry when my son is beaten badly by his cell mate? Its all his choice, after all. And when he tries to kill himself, well that’s his choice. At his funeral his family will all find great comfort in how we didn’t “push” drugs on him.
If your son committed a crime, that’s where they put people who commit crimes. Is it only the bad choices like suicide and crimes you choose to blame on his brain?
My son has the schizophrenia and his dopamine is wrong and he needs help.
They don’t only push them, they want to force them. They are very nasty people seeking to take away the human rights of people like my daughter who is very upset when she reads stuff like this. This is a horrible blog.
For a good example of “tapering off” and how effective it is, read Kay Renfield Jamison,s UNQUIET MIND. Giving this man a forum for his baseless beliefs is not only dangerous to those who are vulnerable, but also sets up a feeling of having failed for anyone not “able” to quit taking their medication.
Curious if he also believes diabetics depend too much on insulin, and those with asthma should throw away the inhaler?
Arguments Whitaker present is not that everyone is better off meds, just that longer term outcomes are better for folks who are able to stay off them, start them and then taper off, or at least taper down. This is not a possibility for everyone, but given that we don’t know individual outcomes ahead of time, if someone is in position to reduce their use of neuroleptics, then in consult with their physician, it may be in their interest to try. It also might not. These drugs have powerful effects (sometimes intended and sometimes adverse), and the conversation about starting treatment with no drugs or intentional minimal use and withdrawal needs to happen early in treatment, which it now doesn’t. It is sad that so many have been started and maintained on them for so many years that withdrawing is such a difficult task. There are risks being on meds and risks being off them, all Whitaker points to is that folks who recover that are least exposed to meds tend to have better longterm health and functional outcomes than folks who are most exposed. If someone is not exposed and does not do well, perhaps drugs are the next best option, but you can’t really know if you drug immediately and indefinitely. I also understand that some people are not comfortable risking not doing so.
Shut Whitaker up! Take away his forum! Take away his freedom of speech!
I forgot to mention I agree with your diabetes analogy! PERFECT analogy! Diabetes!!! Diabetes!!!! Insulin!!!! Yeeah
I attended Whitaker’s presentation at the NAMI Convention and was surprised that his positions were more moderate than I expected. Yet, it was not an objective and balanced presentation of the pros and cons of anti-psychotics. Rather, it was data against the use of anti-psychotics unbalanced by information about the benefits. Although Whitaker may not see how NAMI could have handled his appearance more responsibly, I can think of two ways they could have done so: (1) They could have structured the session as a debate or panel where evidence could be compared, contrasted, and explained to those without much training in critical thinking or statistics; and, (2) they could have emphasized during and after the presentation that anyone considering a discontinuation of their medication should work with their doctor. If a doctor does not want to try discontinuing medication, get a second opinion. I do acknowledge that Whitaker noted the importance of going off of medication gradually, but it is still something that should be discussed with a doctor.
Given the fact that he’s not a doctor, he should have made NO recommendations on medication regimens at all. NONE. and thank you for this eloquent post.
He didn’t give anyone any recommendations about their own medication regimens. Just pointed to the data that suggest that overall, folks who can better without meds or limited med exposure end up experiencing better functional outcomes than folks who cannot, and that the possibility of getting better without exposure to meds may be higher than what was previously thought. He uses mainly data comparing recovery rates from third world countries that do not medicate as frequently (just because of the lack of healthcare systems), historical data,and naturalistic studies to build this case.
He does not say drugs have not been helpful for many, or that being on drugs is terrible. He just makes a strong case for a paradigm of care that tries to maximize functional outcomes, something that our mental healthcare system often seems to get in the way of.
I agree my son is a schizophrenic and he has a dopamine imbalance and the medication is just like insulin for diabetes so people should just not critcize it is very hard being parent of one of these people
I totally agree with Joe…That would have been the better way to present this information…
Hey Robert. You’re a journalist. Stay out of our medicine. Psychiatry hasn’t developed a system of care, and now we’re even factioned into meds and non-meds groups, warring with each other over what the proper way to proceed is, what’s best for very sick patients suffering severe mental illness as a whole. It has never in the history of medicine, ever, been found besides anecdotally, perhaps, that love and understanding, yoga, mindfulness, and spirituality, or trying harder have abated the major debilitating symptom of a dire brain disorder, psychosis. I’m a writer, a mother, and a gardener. Those are my areas of expertise. I’m not a carpenter, I leave carpentry to them. I leave science to the researchers, and I leave taxes to the accountant. If you had medical credentials and presented scores of valid current data on research and treatments, maybe you’d be validated. As it was, you were selected for one reason only: controversy. And the hefty fee NAMI probably paid you could go a long way toward providing a psych bed, a qualified doctor, affordable meds, affordable housing, follow-on care, and community services, areas that lack support for our patients. There are too many patients who cannot function at all, and live in a hell of hallucinations and delusions, without proper medication. (key: proper). And some cases of SMI are untreatable. Pete Earley wrote eloquently about the TRUTHS of our struggles, and faithfully about where our children end up, in the criminal justice system, which is a travesty. He has very few successes to document. But his book is important because it is TRUE. His job as a journalist was to tell the truth, and good journalists do that without relying on inflammatory ideas to set them apart from others or to prove their points. You may not know this, but your reputation is firmly “anti-psychiatry.” Your name is equated with that. Your message is more harmful than you know, not a thought provoking debate. You don’t want to be responsible for the profound effect your message has on sick people and on funding. And neither does NAMI. We parents of severely ill children want medical treatment for medical problems. MEDICAL answers, not journalistic “theories.” Medicine. Oh, and you’re not a doctor.
What “medical” answers, those that Tom Insel, the director of the NIMH, says are non existent? This is the problem with NAMI zealots. Now we have the director of the National Institute of Mental Health and the chairman of the DSM-5 task force, both agreeing that none of psychiatry’s invented diseases has been shown to have a biological origin and that DSM labels are completely made up based on consensus of behavior that DSM committee members find pathological. That is what the top dogs in psychiatry have recently said. And yet, the typical NAMI zealot mom sticks to the fairy tale of chemical imbalances and the like. How pathetic, really.
You are twisting Insel’s words to fit your agenda. The following are quotes from Insel himself:
an article on May 6, 2013, the New York Times reported that Dr. Thomas R. Insel,
Director of the National Institute of Mental Health (NIMH), stated that “his goal was to reshape the direction of psychiatric research to focus on biology, genetics and neuroscience so that scientists can define disorders by their causes, rather than their symptoms.”
“Thanks for checking with the source. We are not
ditching or dissing the DSM. DSM and ICD are still essential tools for providers. My blog was about research where yes, we are asking our grantees to
go beyond DSM to create a new classification based on biology and not just clinical symptoms.
Insel is planning on studying the biologic origins of these diseases. No matter how you slice it, Insel believes that these are brain disorders with biologic and genetic origins. Otherwise, he wouldn’t be studying them at all. You can delude yourself as much as you want in believing that mental illnesses are fictions that exist only in the minds of psychiatrists. Those of us who have witnessed untreated psychosis in the homeless populations, jails and prisons know full well what the result of untreated mental illness looks like.
‘those of us who have witnessed’. HAHAHA
Why is it always these mere third party witnesses who think they can trump people who have actually lived the experiences they deign to define and describe as alleged ‘illnesses’?
This is what Tom Insel said in his now famous blog post
“While DSM has been described as a “Bible” for the field, it is, at best,
a dictionary, creating a set of labels and defining each. The strength
of each of the editions of DSM has been “reliability” – each edition has
ensured that clinicians use the same terms in the same ways. The
weakness is its lack of validity. Unlike our definitions of ischemic
heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a
consensus about clusters of clinical symptoms, not any objective
laboratory measure.”
Now, that is a statement based on FACT. He then went ahead to claim his BELIEF that someday there will be bio markers for so called “mental illness” but one thing is the REALITY, the other is his WISHFUL THINKING.
Those of us who have been harmed by the psychiatric quacks, and their accomplices like the NAMI parents, are saying ENOUGH! We have had it. Time to take the fight for our human rights to the next level, just as gays did.
You sound like my son when he is off his meds. You are in denial of your illness but that is a symptom of your illness too so it is to be expected. Maybe you should get help.
Hahahaha. Now what, a speech about
anosognosia? Do you know anything about what
anosognosia truly is? Since I am sure you are the typical, scientifically illiterate “NAMI dad”, let me help you here. Anosognosia as a scientific term is the effect seen in people who have suffered brain injury, as a result of say being hit in the head in a car accident, are unable to feel pain in say a leg when that leg is hurting. That is “lack of insight”. Since psychiatry has never known a lie it hasn’t liked, it took this concept and applied it to any person who disagrees with their invented labeling. Yet another psychiatric lie (and counting).
I pray for your son that he escapes the Nazi daddy he has. What a disgrace of a father, really.
Please, when you’re taking it to the next level, be sure not to leave the people in homeless shelters, jails, and prisons behind.
I have a different vision of what a world without psychiatry will look like: a lower rate of suicide (like what is was before psychiatrists put a record number of Americans on SSRIs), the practical elimination of mass shootings like those that have been caused by people who were (or had been shortly before) on psychiatric drugs at the time of the shootings and millions of people who will have their dignity back once the DSM quacks are stripped of their power to label as “ill” those whose behavior they don’t like. And of course, no more pathetic NAMI moms/dads promoting poisonous propaganda. That is my vision. And we in the survivor movement will achieve all that through entirely peaceful and legal means, just as gays went in 30 years from being considered “mentally ill” to being recognized their right to marry. Those of us who are otherwise law abiding citizens do not deserve our lives to be ruined by quacks and their NAMI accomplices.
I share your vision.
HAHAHAHAHA ‘You’re a journalist stay out of medicine’. The OWNER OF THIS SITE PETE EARLEY IS A JOURNALIST TOO!!!! You’re hilarious.
I see we are in ‘brain disorder’ land. The land where people label other people as ‘irrational’ yet claim in the same breath that brains that have been shown to be disordered are disordered.
This blog and blogs like it really are the backwater of neanderthals who still believe in a 1950s view of psychiatry. It’s horrible. Enjoy your tiny spike in visitors and traffic while it lasts, next week when you stop talking about people who actually have a platform you’ll be back to your paltry dismal amount of web traffic of nasty brainwashed parents who scream ‘brain disorder’ as though that’s some proven fact.
When I read this story I found myself wondering if it was even true. It sounded over the top dramatic to me. I dunno. Something about it doesn’t ring true to me, and I don’t usually get that vibe.
Maybe the story really is true. It’s silly to blame Robert Whitaker for the decision of a patient.
First of all it assumes we’re incapable of thinking
through risks and benefits of treatment. If the drugs were truly
helping so much then is it possible he was aware of the risks and knew what he was doing? If the medication cleared his mind so much, did he not hear the part about how going off medication without supervision can be dangerous?
It’s
pretty likely (statistically speaking) that he would have gone off of
the drugs anyway (and probably already has many times whether his mother knows it or not)
without hearing Robert Whitaker – because the side effects suck,
and a whole host of other reasons. Most patients do go off the medications at some point, and
many do so without sharing this with family and/or their doctors because we know everyone will freak out and assume we’re all going to die. What is dangerous is creating a situation where patients do not feel they can depend on their families for help through the discontinuation of medication and/or cannot tell their doctors about their decisions to go off medication, so it’s done so without any support. I did not tell my family about my decision to go off the medication. Why? Because I knew they would freak out. The family NAMI class (funded by a pharmaceutical company, I forget which one) actually told the parents in the class my parents attended that we would all die if we go off our medication. Talk about irresponsible. They made my parents so fearful that I could no longer turn to my parents when I struggled with my decision to go off the medication (which was due to my labs being in teh pre-diabetic range). I had to do it without family support which would have been quite helpful. Luckily, I do not have a doctor who responds like some do and he worked with me as I discontinued the medication. Because of his response, I was able to go off in a much safer way, with his help. Many doctors would not have helped me, and I would have been on my own.
I have never received the message that Whitaker is telling patients to go off medication. That’s not what he’s saying. Also, there is this thing called the internet. Patients read about side effects, they read other patients’ stories, they read about the drug companies and their criminal charges, and many of us read lots and lots of studies and have come across and questioned some of the data on our own.
I understand parents want someone to blame, but it’s unfair to pin this on Whitaker.
I wouldn’t be surprised if DJ Jaffe made it up, he’s a known liar and there are numerous instances of him making stuff up all over the place. I would not put it past them to just make up some straw mother to get web traffic. They are in a losing fight over here in this netherword of angry NAMI moms and dads.
I can’t really add anything to the comments already posted here, except the disappointment at the absence of humility in Mr. Whitaker’s response. He paints psychiatry with such a broad brush and I find that in itself dangerous. I wish time would afford the opportunity for him to sit down individually with each family represented here and listen to our unique and complex struggles. He would learn that as in my case, our son’s psychiatrist is very open to trying new therapies and lowering his medications. He would learn that our son’s psychiatrist is humble, openly discussing with me what he does know and what he doesn’t. There is no cure for schizophrenia, bipolar disorder, schizo~affective disorder and Mr. Whitaker would be wise to join in the acknowedgement of this AND engage with the medical community in a humble pursuit of answers. In a perfect world these brain disorders would be moved to a biological classification instead of psychiatric so we can be spared these heartbreaking occurrences and debates that only serve to divide us further. Simply writing a book and hiding behind the title of “journalist” does not excuse anyone from responsibility and scrutiny. In fact, he should be held to a very high standard. Even more so when it comes to an extremely vulnerable population. Thanks.
Deborah,
Again, to this very day, there is no evidence that “schizophrenia, bipolar disorder, schizo~affective disorder” are genuine brain diseases. NO EVIDENCE WHATSOEVER. People find all kind of supportive “therapists”, just as they find supportive astrologers or supportive practitioners of homeopathy. As a matter of fact there are many supportive clergymen as well. That is not the point. The point is that people should be informed and be told about the “true” efficacy (or lack thereof ) of these poisonous drugs and they should be free to listen (or to not to listen) to psychiatrists and so called “loved ones”. Psychiatry is a quackery that should be given the same legal status that homeopathy has. Once that happens, people will be truly free to listen to, or not listen to, psychiatrists.
Don’t waste your time arguing with brainwashed people cannot. The parents on this blog fit the definition of psychotic = they believe in shit they can’t prove exists.
This made me laugh big time! Indeed, I hadn’t seen it that way but there is definitely a strong case that can be made about the NAMI parents being literally “psychotic” :DDD.
I think that you are being irrational here. Clearly you will dismiss anything that interferes with your fixed belief. Patricia Forsdyke.
Sorry to break your hear baby, but science is not a democracy; It is governed by the laws of nature, the rules of evidence and the rules of mathematical deduction, none of which are democratic.
So while I continue to guide my opinion about psychiatry from scientific thinking, you have nothing to appeal to except “your opinion”. So yes, I will continue to dismiss fairy tales that some continue to make pass as “science” as long as these fairy tales are unsupported by scientific evidence (and they have been unsupported for many decades now).
Science is not a democracy; It is governed by the laws of nature, the rules of evidence and the rules of mathematical deduction, none of which are democratic.
So while I continue to guide my opinion about psychiatry from scientific thinking, you have nothing to appeal to except “your opinion”. So yes, I will continue to dismiss fairy tales that some continue to make pass as “science” as long as these fairy tales are unsupported by scientific evidence (and they have been unsupported for many decades now).
We get it, you find people who don’t agree with you ‘dangerous’ and they shouldn’t be allowed to speak. There is no cure for DSM labels that even the head of NIMH lack validity? Oh.
‘these brain disorders’. Anybody ever tested your son’s brain? Where did you get this testing done? You must have been very upset when the results came back positive for ‘brain disorder’.
My son had the dopamine brain scan so I dont no what you are talking about
Are you talking about a DaTscan? I think these are intended to test for parkinson’s disease. As some folks who have been on antipsychotics for some time do begin to develop parkinsonian-like symptoms, perhaps the scan is only concluding tthat antipsychotic medication has caused observable damage to your son’s brain, not a disease.There is no test for schizophrenia.
Deborah of course there are many families trying alternatives and many psychiatrists friendly to reducing the use of drugs and using non-drug therapies. Many of them post on our site, Mad In America! We talk to all kinds of psychiatrists and families with various beliefs and practices. Please do scrutinize Bob’s research and statements as closely as you can and let us know if you find any specific incorrect statements.
However, the assertion that “there is no cure” seems to be faulty in the light of the great number of people who receive these damning diagnoses and then go on to resume regular, wholesome lives, without any behaviors that anyone would label as a disease, and without taking any drugs. Many video and written testimonials from such folks are available on Mad In America and elsewhere. The disease model is highly questionable, and far from proven by any science.
I agree that it would be much easier and more convenient to move to a fully biological model, but I would add that the blind faith that an accurate biological model will be found to justify heavy drugging may, in the history books, be looked back on as one big witch hunt.
So, what happens next time?
A man listens to one of Bob’s lectures…
Later, he decides to shave his head and sell everything he owns.
His ‘NAMI Mommy’ sends Bob the tab – for a haircut and replacement furniture for his room in the basement?
Is that how it works, NAMI Mommies (and Daddies)?
Duane
Yep, angry NAMI momies and daddys screaming TAKE AWAY THE BAD MAN THE DANGEROUS MAN DON’T LET HIM DO SPEECHES JUST SHUT UP AND LET ME DRUG MY KIDS INTO OBLIVION.
Now back to the real world where people with open minds live – that is not on this piece of shit blog..
You shouldn’t say the word “shit”.
But I have a brain disorder. Just like the children of the NAMI parents you have no right to hold me responsible for the language I use. We need more research.
My uncle is a schizafrenic you people r doing good work thank you. They are sick people but sometimes they are ok.
Wow, I am not sure what to even write but here goes. Regarding what consists of a slow taper, for many people on antipsychotics, it means reducing a med 2.5 to 5% of current dose every 4-6 weeks. Many psychiatrists, even ones who consider themselves to be tapering slowly, do it alot more quickly with patients which can cause withdrawal symptoms that look like a relapse but aren’t.
To those of you who claim your loves ones aren’t capable of making a fully informed decision about meds when they are psychotic- In my opinion, it doesn’t seem like many people on antipsychotics are being given the opportunity to make one when they are lucid. And before anyone flames me, hear me out.
I am sensing (of course, I don’t know the whole story) that the issue of discussing reducing or discontinuing meds is a forbidden topic. I mean, look at how many people on this blog didn’t want their kid to hear Whitaker’s speech. So of course, they are going to abruptly discontinue their meds in a dangerous fashion behind your back which leads to the dangerous consequences that people have talked about.
Again, as Bob stresses, this isn’t about being pro medication vs. anti medication. It is about scientific research that shows that some people can get off of the meds, and many people do better over a long period of time on a low dose vs. a higher one.
So maybe your loved one, if given a fully informed choice would chose to stay on the med at a lower dosage. You really don’t know what his/her decision would be. But at least it would be done in a collaborative manner and not secretively which again leads to horrific consequences.
I wanted to address the comments in which people feel their kid has a dopamine shortage. Actually, that would be impossible to determine since chemicals in the brain fluctuate on an constant basis. That is why I feel the comparison to needing insulin (which can be measured) is an invalid comparison.
For those of you who think doctors are the experts, I guess you have never been the victim of malpractice or had a loved one experience a similar situation. Not to be blunt, but if I had accepted that they were, I would be dead.
Finally, I wanted to gently remind people that the current president of the NAMI Board, Keris Myrick, was diagnosed with Schizophrenia, but hasn’t taken medication for years. I am not stating this to imply that this is possible for everyone. But I am frankly getting tired of the claims that people with this condition who don’t take meds must have been misdiagnosed or have a mild case. That is extremely insulting even though I am sure people had good intentions when making that claim.
Anyway, I wish everyone well.
Mr Whitaker loves to take little bits out of research that support his view when, in fact, the researchers themselves are far more cautious as they should be. There were caveats provided by the research he quoted above by Wunderinck, Harrow and the McGorry editorial:
What McGorry concluded was that:
In moving to a more personalized or stratified medicine,we first need to identify the probably very small number of patients who may be able to recover from FEP with intensive psychosocial interventions
alone. For everyone else, we need to determine which medication,
for how long, in what minimal dose, and what range of intensive
psychosocial interventions will be needed to help them get well, stay
well, and lead fulfilling and productive lives. These factors have
rarely been the goal in the real world of clinical psychiatry—something we must finally address now that we are armed
with stronger evidence to counter poor practice. Antipsychotic load
is a key concept that takes us beyond polarized views stoked by
alarmists on the one hand and hard neurobiological reductionists on
the other.
What Wunderick said was Additional studies are necessary before these results are incorporated into general practice.
He also had this caution on the results “One of the first things to consider is the selection of the sample included in the original trial. As noted, approximately half the eligible patients with FEP were not willing to participate. Compared with participants, these nonparticipants differed in showing a lower level of functioning, being less adherent to therapy, and being more difficult to engage. In the present study, one could say “the best half” of the FEP patients presenting in clinical practice was evaluated.
As for Harrow, he stated that it is not possible to predict who may be able to go off medication and those who need the long term treatment. Intensified research is needed.
Those who Whitaker cites are far more cautious than he is for good reason. Don’t yell fire until you know there is a fire
For some reason, my earlier comment from last night did not make it. I’ve commented on this issue in the Huffington Post with the head “Journalists Are Not Medical Experts at http://www.huffingtonpost.ca/marvin-ross/journalists-are-not-medical-experts_b_3643655.html
Marvin, I tried to respond to this comment over there but I find the login procedures confusing unless I can post as a guest which thankfully Mr Early allows on this site. Anyway, I am sure this is not your intention but you are coming across as advocating that journalist rubberstamp anything that doctors claim just because they have an MD by their name.
Regarding the MD that threatened to sue you because you were going to post concerns about a surgery causing blindness, what about the public’s right to that information? And it isn’t like doctors are always honest about side effects from procedures and meds. In fact, many times, trying to get that information is like pulling teeth.
As one who feels my life was destroyed by psych meds, I wish to god I had access to Whitaker’s information alot sooner. It would have saved me alot of heartache.
But no matter what your views on him are, to suggest that people be kept from listening to his speeches comes unintentionally comes across as very patronizing. Just because someone has an “MI label” doesn’t mean they lose all rights as a patient who has the right to be fully informed just like you do with your medical conditions.
Yes, I understand when someone is psychotic, that is a different ballgame. But it seems people want to keep people from accessing information when they are fully lucid and that is so wrong.
Additionally, I find it interesting that you are claiming that Dr. Torrey is an unbiased expert. It reminds me of a former co-worker who claimed a newspaper had an extreme liberal bias. When I asked him his ideal objective newspaper, he mentioned a very conservative one.
Anyway, it is my understanding that you do agree that a new practice in prescribing meds is needed even though it sounds like your views how many people can be med free are totally opposite from mine. That is a good thing and no matter what your views are of Mr, Whitaker, he deserves all the credit for getting that discussion started.
AA take a look at my post just before this one on what Harrow, Wunderinck and McGorry actually said. Not as black and white as reported by Whitaker. Yes people have the right to know all that there is to know and I am critical of docs who prescribe meds without also looking at other treatment modalities that can help their patients. Oh, and I did say that Torrey is controversial which he is but he is also a research expert and a clinical psychiatrist which neither Whitaker nor I am.
The media and celebrities have made a great deal out of one bad scientific paper disproved that showed a link between vaccinations and autism. There is no evidence of that link and yet many people are refusing to vaccinate their kids. As a result, diseases like measles, mumps and polio are returning. I’m old enough to remember the horror of summer time polio epidemics and returning to school in the Fall to see kids missing because they were dead or in iron lungs.
The media made a big fuss out of an unproven “cure” for MS and desperate people tried the surgery and some died. Subsequent studies found the theory to be wrong. When it comes to schizophrenia, studies have shown that antipsychotics which no one pretends are perfect will remove the worst of the symptoms for most people. Yes, we need better meds and more community supports, CBT, psychosocial education, rehab, etc and we don’t get that.
Serious mental illness is complex and not really understood so touting a theory as a lay person is, in my opinion, irresponsible.
Very good point about the vaccinations’ issue.
Have to disagree that the meds help a majority of people as alot of those studies are underwritten by drug companies. Still, I definitely don’t disagree that they can be helpful in certain cases.
Have to respectfully disagree that a lay person can’t understand mental illness, particularly when many experts have falsely touted extremely flawed theories that have not been proven like the chemical imbalance.
Also, many so called experts don’t seem to understand that trauma is a prime cause of many people’s problems. And before anyone starts to claim I am denying that schizophrenia exists, I am not.
But to claim that abused wives are bipolar as what happened to a former co-worker is despicable and unfortunately happens frequently.
Again, Mr Ross, just because someone has an MD by their name doesn’t mean they know what the heck they are talking about. Anyone who takes that attitude may be putting their life or their loved one’s life in jeopardy.
Trauma is not the cause of schizophrenia and most research is not done by MDs but by scientists with PhDs in neuroscience, physiology, pharmacology, epidemiology, biostatistics and genetics.
And, as for drug company sponsored research, the study that Whitaker cited as proving his hypothesis by Wunderinck in the Netherlands was funded by a pharma company.
From the paper in JAMA:
Funding/Support: This study was funded by
unconditional grants from Janssen-Cilag
Netherlands and Friesland Mental Health Services,
Leeuwarden, the Netherlands.
Role of the Sponsors: The sponsors had no further
role in any part of the study or preparation of the
manuscript.
As a trained scientist (with a PhD degree in hard science from one of America’s top universities) my mind explodes every time somebody brings E Fuller Torrey as the poster example of a “respected expert” on these matters. He has no credibility among mainstream scientists (even among those who support many of his policy proposals) because he is the poster example of pseudo scientist. His opinions are not based on hard scientific analysis, because his papers do not have any rigor whatsoever, but on who pays his bills. He was strongly “anti psychiatry” before he was strongly for “forced drugging”. What happened in the middle to force him change his views, some kind of epiphany? Well, no, he got money from a very wealthy foundation to promote the pro drugging mantra and that’s what he has been doing ever since.
The thinking in mainstream psychiatry is represented by the views of Tom Insel (director of the NIMH), David Kupfer (chairman of the DSM-5 task force) or Allen Frances (chairman of the DSM-IV) task force. All of them agree that psychiatry has not produced a single biological evidence to back their invented diseases (even though, to different degrees, each continues to promote the ‘belief” that DSM labels are caused by biology). So these mainstream psychiatrists represent very well the current situation: their analytical mind tells them that they are promoting ideas that are unsupported by scientific evidence. Their heart tells them that maybe someday somebody will find something that will back their theories but they are well aware that to this day there is zero evidence that any of the DSM labels are caused by biology. But they again, it might also happen that someday somebody discovers unicorns in Mars that produce intense electromagnetic waves when they get sexually aroused that cause some people on Earth to exhibit behaviors that DSM people mistake for “mental illness”. Nobody has seen these unicorns just as nobody has produced biological evidence for so called “mental illness”.
E Fuller Torrey is part to the propaganda machine of Big Pharma and the APA. And a very bad one, I have to say.
It is always helpful to consider all relevant research related to an important issue. I hope we all can consider different viewpoints and discern for ourselves which path to follow. And I am certain the distraught mother made her “blood on your hands…” comment in a moment of deep despair about her son’s relapse.
Thank you to all who are committed to advocate for those battling mental disorders and to the worker bees trying to improve the mental health system.
Why does Whitaker make it sound as though your choice is to taper off meds or go of them suddenly? I tried no meds for 37 years and then meds for 25 years. I much prefer meds and stability and do not intend to go off them, by tapering or suddenly, unless I am forced to. He says that 50% could benefit by going off meds–does he not realize that 100% have already tried the no meds route? Surely, if people want to go off meds for a medical reason they should, but it is unconscionable to encourage those who are doing well on meds but whose minds are not right and believe that meds are not good for them to stop taking them. This is taking advantage of a person’s illness to further your theories.
Hmm, I don’t think he was advocating that. Of course, if you are happy with your situation, you shouldn’t change it.
The purpose of his presentation was to show research suggesting that some people might do better at lower doses or might be able to go off completely.
Sandra Steingard, a psychiatrist who is not anti meds, agrees with this. Of course, if you read her blog entries, you may disagree but my point is that Mr, Whitaker isn’t flouting wild crazy theories that no established medical professional supports.
I hope you have much continued success with your stability and I truly mean that.
If ever there were a multi-sided debate…
We need dialogue, dissention and well thought-out arguments.
Is Whitaker any more responsible for his spoken words than Timothy Leary was when he advised young college students to use LSD?
Lets be reasonable and let this guy off the hook. And maybe be thankful for another dedicated learned person taking up the cause of mental health treatment.
If we recognize that what we call mental illness cannot be categorized, organized by symptom and put into neat labeled boxes, we may understand how drug therapy is extremely difficult. Hopefully, we are all aware that the DSM groups them for the benefit of doctors. Intelligence tells us as there are no two personalities the same, neither are there mental illnesses. Many diseases can be organized. Diabetes and herpes acts the same way in everyone. Mental illness is a unique disorder that will never be found the same in two people. All psychotropic drugs are hit and miss.What helps one schizophrenic, may kill another.
Unfortunately, since the advent of thorazine in the ’50’s, each and every mental health patient has been and still is being tested on.
It would only be prudent, and Constitutional, that every patient forced or willingly taking medication, would have some monetary reimbursement or protection. Even after FDA approval, no one knows exactly how the drugs will work.
Considering that mental illness is not contagious, there should be no urgency to drug first like you would with TB. Every therapy in the universe should be there for the patient before his brain is further rearranged w/ unknown drugs. I think mental illness is the last disorder on earth that we still don’t know all that causes it. And unlike Alzhiemers and cancer, no big money is earmarked to find out. I wonder where all the profits go for the thousands of psyche drugs?
Maybe doctors vacations are more important than relieving the suffering of tormented souls, and acquiring the knowledge to prevent mental illness.
Thank you Pete for facillitating a forum where, as a good investigative reporter would, the whole picture – good, bad, and ugly, – is there for us to examine. Somewhere therein – lies the answers we all so desperately hope to claim.
I agree with Whitaker. When my med crapped out on me and I needed a doctor to help me taper off, none would help. We put people on these drugs, but there’s no “exit plan.” The patients are left to sink or swim on their own.
I do disagree with one thing Whitaker said here. Using benzodiazepines to assist with sleep while coming off of antipsychotics is rather like jumping from the frying pan into the fire.