Journalists, Medical Research and Medical Practice

By Marvin Ross and Dr David Laing Dawson

As a medical writer and as someone who works in the daily trenches of serious mental illness in my own family, I find people like Robert Whitaker dangerous. For those who aren’t familiar with him, he is a medical journalist from Boston who is highly critical of the long term use of medication for schizophrenia even though he is neither a scientific researcher nor clinician.

My earlier criticisms of his work appeared in the Huffington Post as Journalists are not medical experts and Leave the schizophrenia diagnosis to the experts please.

One of Whitaker’s key criticisms is that the long term use of antipsychotics in the treatment of schizophrenia makes people worse not better. A group of researchers in New York set out to see if they could replicate what they called his “troubling interpretation” and published their results in a recent issue of the American Journal of Orthopsychiatry.

Their hypothesis was what Whitaker contended that the long term use of antipsychotics resulted in worse outcomes than people who are not treated. They wondered if a systematic appraisal of all the literature would produce the same results as claimed by Whitaker. They looked at 18 studies which included the four that Whitaker used. They pointed out that Whitaker used an additional 6 studies to come to his conclusion but they did not include them because they were review articles that did not report separated data on the exposure groups or were ecological studies which did not report on individual level data.

Of the 18 studies they looked at, only 3 supported the hypothesis that long term treatment with medication causes harm to patients. 8 studies found the opposite and 7 were mixed. These researchers, however, also did not find that long term treatment resulted in greater benefits than harm which is, frankly, not surprising. Some recent studies show that some people with schizophrenia can manage well without long term drug use which Whitaker likes to cite. But there is also no way to predict who can actually achieve that. That is a caveat in all those studies and a fact that Whitaker seems to ignore. (see my post on leave the diagnosis to experts).

Lumping all people with schizophrenia together for a study is bound to have problems since schizophrenia is very likely more than one disease. When Bleuler first coined the term schizophrenia in 1908, he called it the schizophrenias to indicate that it was more like a spectrum than a single entity. Unfortunately, science has not reached the point where the different forms can be identified. An editorial in the January 1, 2016 issue of the American Journal of Psychiatry makes that very point. Current treatment algorithms, it says, do not take into account the substantial interindividual variability in response to antipsychotic drugs.

And, a recent study of first episode patients published in the Journal of Clinical Psychiatry found a greater relapse for those who went off medication after they were stabilized. Decisions to try to reduce doses and to go off are best left to the individual patients working with their psychiatrist. Going off or staying on medication is described by my blogging colleague Dr Dawson who has close to 50 years clinical experience treating patients in a variety of situations. Here is what he has to say:

We doctors over treat at times and under treat at other times. And occasionally we get it just right.

Studies show that family doctors are much more likely to under treat than over treat (pain, depression, arthritis), with specialists erring in the other direction. This is as one would expect, for specialists receive their patients after a family doctor has deemed the case too complex, too resistant to a first line of treatment, or simply beyond her zone of knowledge, skill and comfort.

I have been guilty of both under treating and over treating, probably more often the former. These are type 1 and type 2 errors. If we work to totally eliminate one type of error we will increase the incidence of the other.

We need to be vigilant catching both types of error and correct or ask for help, without letting our egos get in the way.

My patient tells me she is feeling much better now that she has stopped taking those pills I prescribed for her. And at that moment I must allow my feeling of relief and pleasure seeing her look and sound better over-ride this small insult to my ego. Unless I know for sure this is a relapsing illness that will re-emerge within a few weeks, perhaps worse than before.

I also know that it may take a relapse or two or three before we are both sure it is better to suffer the minor discomforts caused by these pharmaceutical agents than the blackness of severe depression, the torture of obsessions, the horrors of psychosis, or the social destruction of mania.

It is really a very small percentage of people who have suffered these severe illnesses who would willingly give up the medication that treats and prevents them. I am usually the one to suggest it may be time for a cautious reduction.

And those that quit them and return to a state of depression, obsession, psychosis, or mania do so for a variety of reasons. Occasionally the side effects were much too severe, or the drug was not helping much. The financial cost too much to bear. The very fact of needing these medications to keep sane can be, for some, an intolerable thought. A manic may remember the ecstasy and not the night in a jail cell, for which he can blame others. Another may find that the drugs he can buy on the street give him, at least temporarily, total relief. Still another may quit simply because there is no one near to remind him, to support him, occasionally to insist. And then a few who prefer to believe their true nature consists of special powers, a supreme intelligence, a grand future, clear reason to be, to be loved by a movie star, to be a hero, to have a unique relationship with God, to have a clear and present or distant antagonist – who prefer to live with this sense of self no matter the earthly consequences – which can always be explained away – than to accept the earth-bound but often meager existence provided by faithfully taking one’s medication.

But most people, when sane, prefer to remain sane, even if it means a dry mouth, a little dizziness upon arising too quickly, blood tests more frequently, a harder time keeping weight under control.

As one patient recently said to me: “Thank God for these big pharmaceutical companies.”

To which I responded, “Not everyone would share that sentiment.”

And he then said, “Why not? Without them you and I would be having this conversation in the asylum.”

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10 thoughts on “Journalists, Medical Research and Medical Practice

  1. Excellent and urgently needed message.
    I don’t have a specific reference, but I clearly remember research saying that people with serious mental illness relapse an average of seven times before accepting they nee to adhere to their treatment plan.

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  2. I’m glad you included depression among these mental illnesses. Statistically, there are far more people out there with depression than schizophrenia. Also, there is the fact that as one ages, these illnesses become entrenched, probably due to permanent changes in the brain. Whitaker has bothered me for a long time, mainly because he cherry picks the data to support his hypothesis. Dangerous indeed. How many people have gone off their meds after reading Whitaker? And is here there to help clean up the mess? Hah!

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    1. Unfortunately, Whitaker has found his journalistic niche and his followers. They are as oppressive and abusive as the people that they target with their wrath. That, along with their interpretation of studies and research is the issue that I find unsettling; they have found a way to be controlling and authoritative (without real authority) and are using fear tactics instead of common sense, rational decision making, open minded examination of data.

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  3. Thank you for this critically important review. When you read the articles and blogs on Mad in America which is Mr. Whitakers site you will find that non medical “survivors” of what is called psychiatric torture are influencing readers to withdraw from medication. One of the writers goes so far as to prescribe how to do this and she has no medical training; she has been hospitalized many times. For me, this is truly dangerous as is the use of words such as torture, “rape” to describe treatment by psychiatrists. I would like to comment further and share some of the more unfounded, shocking things that this site contains. I believe readers need to know that psychiatry is not an oppressive, “Nazi” field (another term that they freely use).

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    1. To Ms. Altman,

      1. People who forcibly insert foreign objects into the bodies of other human beings ARE rapists.

      2. Survivors giving other survivors personally-tested advice on reducing or stopping their psychiatric drugs is, obviously, not ideal, but clinicians won’t assist people in their efforts to live their lives without these drugs.

      3. As for the term “Nazi”, I defy you to name even one thing that psychiatrists and Nazis don’t have in common.

      4. Whoever must live with psychiatry’s good, mundane, bad, and evil consequences is the expert. Even the education that doctors receive stops short of qualifying them to control their patients’ bodies. There’s just no substitute for learning about psychiatry from the inside out.

      To Mr. Ross and Mr. Dawson,

      Mad people’s beliefs about their “true nature” are no more “delusional” than your beliefs that ANY life is better than a Mad one, that law-abiding people can be stripped of their human rights, that psychiatry actually gives a damn about its guinea pigs and inmates, that people can erase each other’s memories and identities, that the merit of people’s activities can be measured in fame, dollars, or power, that things which aren’t observable aren’t real, that people are contemptible for wanting or having “too much” self-esteem, and that human beings – even those who are very, very much in need of help – can be “put away” as though they were hoarded items of junk in somebody’s garage.

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  4. Harriet A. Washington, author of “Infectious Madness”: the surprising science of how we “catch” mental illness , deserves a mention here. Wordy discussions about SMI should/could be displaced by scientific research methodology if we are ever to find the cures that have evaded us for centuries..

    To continue to fund social studies in a attempt to learn more and eventually find a cure for these horrendous diseases is like the person who repeatedly keeps doing the same thing while expecting different results.

    That’s what has been going on for many decades with neurological diseases. It’s time to face the evidence of a biological root cause and move ahead to using scientific methodology to relieve citizens of these horrendously cruel brain diseases.

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    1. I agree. While science is, I hope, aggressively pursuing a cure or close correlations that will eradicate serious brain disorders I think that we need to find strategies for reducing the pain and disability that these illnesses cause. For example; the high risk population for schizophrenia includes young males who have demonstrated specific social dysfunction in early childhood and in pre=onset years can be helped to improve skills so that they can avoid being isolated even if schizophrenia develops. Also knowledge about how early trauma in the form of parental negative verbal abuse, bullying etc makes vulnerable children more susceptible to illness may make parents and teachers pay closer attention to these issues. It’s all about covering as many bases as we can while supporting the science that takes time and funding

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      1. One of our problems has long been that we allowed all kinds of assumptions to be included in descriptions of schizophrenia.

        So there followed a Quantum Jump about the cause of mental illnesses, for one. Quantum Jumps have entered everyday languages as a metaphor for a large discontinuous change

        Not unlike our acceptance of the then popular theory that ulcers were caused by mental stress.

        It took a Nobel Prize for the scientific truth to be widely accepted–years after the discovery that ulcers were caused by a specific gut bacteria . This became evident when later microscopes, improved with higher magnification.

        But social studies had gained such traction as the route to the truth, there are still many professionals and citizens who, for whatever reason, won’t believe this scientific evidence.

        We owe it to the human race to keep abreast of recent scientific brain discoveries to inform our scientific understanding of the these brain diseases that continue-unstoppably to attack our youth–teen-agers and young adults.

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  5. Re” The Sohler et al study Weighing the Evidence for Harm From Long-Term Treatment With Antipsychotic Medications: A Systematic Review.

    Frankly I find the way your discussion of the Sohler et al. study quite disturbing. Like you say, this study reviewed all the relevant studies about the long term use of antipsychotics. The researchers of that study (who have nothing whatsoever to do with Whitaker) found that there was not evidence for or against whether the use of antipsychotics improved long-term outcomes for people diagnosed with schizophrenia In other words, the long term use of antipsychotic medicine is not, at the current time, evidence -based.

    So right now it is unknown whether, or which people, would recover more fully in a recovery program that uses antipsychotics as first line treatment, versus recovery programs that wait and do not start with antipsychotics , unless necessary, until much further down the road..

    Just because an illness is biologically based does not mean that the right treatment has been found to treat it.

    With more recent research coming out about micorganglia and ‘pruning’ , it becomes even more evident that antipsychotics are merely treating a ‘symptom’ rather than an underlying cause. Perhaps treating some of the symptoms can help some people cope enough to get their life back on track, but perhaps for other people, the use of these very powerful medications have created supersensiitivity, worsening symptoms and withdrawal syndromes like some of the theories based on some of the research suggests.

    I think the real answer is we just don’t know, and quite honestly I do not understand why as parents, we are not wanting to try and figure out the ‘truth at all cost’, rather than aligning with either a pro or anti ‘standard psychiatric treatment’ approach. The best psychiatrists consider what all the new research is saying, are open to hearing what other approaches can add or offer to their patients, and listen to both the people affected and their families. And the good psychiatrists, will tell you that they don’t know for sure whether or not a person is able to recover without antipsychotic medication or not. As families during this time when so much is unknown, we need to support each other with the different approaches that work for our loved ones,

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    1. Thanks for your comments. I mostly agree with what you say but, for many, anti-psychotics do help with the most difficult of symptoms of schizophrenia. They do not cure, as you said, but they can help sufficiently for some people to manage reasonably well. Psychosis is only one of the symptoms as their are also cognitive deficits that can be quite disabling. Take a look at the guest blog here by Erin Emiru (nee Hawkes) entitled I thought I was too smart to have schizophrenia and the reply to that.

      Marvin

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