This morning I followed a Google Alert to an article in Medical News Today, which reviews the results of a new meta-analysis exploring the long-term outcomes of taking antipsychotic medication. The article confidently claims: “Lieberman and team looked at clinical trials and neuroscientific data, and they found that the therapeutic benefits of antipsychotic medication far outweigh their side effects.” The journalist, Ana Sandoiu, goes on to quote Lieberman as stating that “Anyone who doubts this conclusion should talk with people whose symptoms have been relieved by treatment and literally given back their lives.“
For my doctorate research, I talked with 144 people who take or have taken antipsychotics and a third gave me these kinds of descriptions. Another third said quite the opposite, and I can hear them yelling at me to share their side of the story.
There is no citation or web link to the original paper so it is difficult to verify whether Sandoiu’s interpretation of the results or use of quotations is accurate to the researchers’ intent. But I managed to track down the abstract (Goff, Falkai, Fleischhacker, et al, 2017, in press1), which states: “Little evidence was found to support a negative long-term effect of initial or maintenance antipsychotic treatment on outcomes, compared with withholding treatment. Randomized controlled trials strongly support the efficacy of antipsychotics for the acute treatment of psychosis and prevention of relapse.”
This doesn’t actually say they found that the benefits outweigh the costs. It says they did not find a negative long-term effect. It says they did find a positive effect on symptom reduction in the short-term. The grand claim may seem to be the obvious implication, but we cannot assume that statistical significance always translates into personal significance, and there are other relevant measures of recovery missing from the analysis so the weighing-up process is flawed. The subtleties have definitely been lost in translation. Instead we are offered an oversimplified shot at absolute truth that totally obscures individual variation, and invalidates the perspectives of those who report negative effects — the very people who tend to drop out of clinical trials and be lost to long-term follow-up.
The perspectives of people who take antipsychotic medication weren’t considered in this meta-analysis at all. Nor was the possibility that unmeasured psycho-social factors might account for the variation in outcomes these studies observed. People who take antipsychotic medications do not spend their lives sitting inside a vacuum passively receiving their experiences from chemicals in their brains. Social support, coping style, occupational activities and situational stressors are just as relevant to the outcomes of people who take antipsychotics as they are to any other group of people. If the research hasn’t controlled for these factors, and the vast majority has not, there is no way we can confidently declare that the benefits of antipsychotics universally outweigh the costs. From what I can see, the researchers did not actually make such a sweeping claim, but no one reading Sandoiu’s article will know this.
I’ve spent the last five years immersed in the antipsychotic research. As a whole this is a body of literature that seems obsessed with statistically proving the rightness or wrongness of taking antipsychotic medication. For every few studies that report a benefit to persisting with antipsychotics (Alonso et al., 20092; Haro, Novick, Perrin, Bertsch, & Knapp, 20143), there is an article that finds a long-term cost, or no difference at all (Harrow, Jobe, & Faull, 20124; Landolt et al., 20165; Wils et al., 20176; Wunderink, Nieboer, Wiersma, Sytema, & Nienhuis, 20137).
It is possible that each of the above is true for different people at different times, but the meta-analysis simply weighs in on the existing good-bad/right-wrong debate. It was likely predestined to reveal a benefit because problems with publication bias mean there are more studies with positive results than negative results to go into the meta-analytic pot. We need to shift towards looking at the within-group variation among those who persist long-term and among those who discontinue — this is where we will discover how to improve the recovery outcomes of both sets of people.
One of the major insights I took from the 144 people who answered my survey was that individual experiences vary and they are all valid. In my study, overall subjective experiences ranged on a continuum from “life-saver” to “hell” and every point between (Larsen-Barr, 20168). Around a third reported overall positive experiences such as “A major relief from the monsters […] for me they have saved my life” and “Helped me get through an unstable period of my life.” And around a third of the participants reported mixed experiences such as, “A short term help when needed then a burden” and “A double edged sword. They help me with my bad experiences but they also take away the wind in my sails.”
Another third reported wholly negative experiences such as, “The worst experience of my life […] affected every aspect of my health and wellbeing.” The therapeutic benefits certainly did not outweigh the costs for those who described the overall experience of taking antipsychotics as “The ruin of my life” or said they were “Helpful to a point but […] robbed me of everything I value in myself as a person.”
The claim that the benefits of antipsychotic medications conclusively outweigh the adverse effects just is not true for some people. It is true for others, and for some people it is true in the short-term and later stops being true. I look forward to the day we can stop debating which group of people really exists because they clearly all do. The only way to determine whether the benefits are outweighing the costs is to ask the individual experiencing them, and to keep asking over time. A quantitative meta-analysis cannot give us the answer.
Thanks, Miriam. I’m in the 1/3 group for whom psych drugs did FAR MORE HARM than good….
There’s a 4th group you’re ignoring here. The *DEAD*. Psych drugs HAVE KILLED people, but their lives – and their deaths – are not part of the medical record. You need to help me more widely publicize my current over-riding diagnosis.
IATROGENIC NEUROLEPSIS.
….you do the math….
~B./
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This is a great article.
And like I said here – https://www.madinamerica.com/2016/09/rejecting-the-medications-for-schizophrenia-narrative-a-survivors-response-to-pies-and-whitaker/
I think we need to make it clear that these antipsychotic drugs are in no way medications targeting any specific disease process. They are simply general tranquilizers which dull the ability to think and feel (both good and bad things) in the same way that a tranquilizer does to any animal, such as the cattle and sheep that similar compounds are often used on. Their mode of action is no rarified or medical than that. So, for some people being tranquilized and having one’s fear and rage reduced to a tolerable level can be a desired thing, at least temporarily. For others, they make it hard to deal with problems in living, and/or have horrific side effects. What these drugs in no way to is treat a disease called bipolar or schizophrenia. Let’s be clear about that.
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Agreed, in part it’s because of our Calvinist-Puritan heritage that we can’t admit that people take drugs simply to feel better*, and/or that feeling good is a *necessary* part of the human experience.
*So we call them “medications”.
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Thank you for this article. Can we find your thesis?
I have read the full paper and one reason why they rejected some papers from their meta-analysis or discounted the findings was due to drop out rates among those who stopped drugs. But the assumption of these researchers is that the drop outs likely had worse outcomes so it skewed results to show negative effects of the drug. This kind of implicit bias is not acknowledged in this paper. The conflation of short-term benefits and high relapse rate when drugs are stopped with good outcome is one of the biggest errors in the field and this paper does that in its original form in a more subtle way but in the press release in an overstated, triumphalist way. I find it ironic that a group who supposedly stands for the values of science would act in such a way. The paper also points how the mere admission of ties to Pharma does little to address the serious problems that COI and bias play in medicine.
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Thanks sandy. Put me in the camp of one of the ones destroyed by antipsychotics and psychiatry in general.
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You sure can. It’s available on Research Gate here: https://www.researchgate.net/publication/309485009_Experiencing_Antipsychotic_Medication_From_First_Prescriptions_to_Attempted_Discontinuation
I can’t fathom how the authors could conclude that their results would be negatively skewed by the absence of people who are most likely to have negative experiences. This would cause a positive skew to their data. I have read SO many papers like this in the last few years, the data says one thing and the discussion turns it into something else. 5 of the 8 authors declared financial ties to pharmaceutical companies, and it is not known to me how many of the papers they analysed also had conflicts like this, but knowing the state of the literature, it’s likely to be most of them.
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I want to amend my comment above. It was pointed out to me that this paper is not a meta analysis. I also want to clarify my statement about the effect of drop outs. There are two studies cited (Schooler and Rappaport) where there is long term follow up of two groups who had been initially randomized to either drug or placebo. In these papers, the group that was initially on drug has a worse outcome. However, there was a much higher drop out rate in the placebo group during the initial phase and those drop outs were considered to have a poorer prognosis. With the Schooler paper, the authors are stating that the positive response to the drug allowed some individuals with a worse prognosis to get discharged thus skewing the results in favor of the placebo group. My point in my comment above is that while the authors may be correct, there remains room for doubt about their conclusions. As noted above, the conclusions are not that they have demonstrated improved outcome with drug rather that they fail to be convinced that drugs worsen outcome.
I wonder how many of these authors entered the process of this review with a particular belief about the conclusions they would reach. Were there any among the eight who thought drugs worsened outcome? Did any of them change thier mind as a result of this process? I do not know them all but while there is geographic diversity among them I am not sure there is another kind of diviserity – that of perspective. I do not know but I wonder. I do not think this kind of review process can be entirely divorced from bias so bringing together individuals who enter the process with disagreement is worthwhile.
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Can anyone with access to the paper share the conflict of interest section? I’m curious if the stated COIs correspond to the ones I’ve found from web searches. All the authors save one appear to have financial ties (research funding, honoraria, speakers’ bureaus) to drug makers, especially those that make antipsychotics.
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As I count it, five of the eight authors have active ties. The senior author, Jeffrey Lieberman has no ties but has spent a career doing psychopharmacology research and has had ties in the past.
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Thanks. I found tons of past ties, so I wondered if they were downplayed or omitted from the paper. It’s a shame the COI section isn’t public along with the abstract.
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Jeffrey Lieberman, former APA President, well known well rewarded drug-pusher for the pharmaceutical industry. and Stalinist-style propagandist for modern psychiatry!
You can discount that analysis. Thanks for information Sandra.But indeed
it is not clear why if drop-outs had worse outcomes (as expected)
that should skew studies to show negative effects of the drugs. ??
Lieberman is no “scientist.” He recently wrote a book–an advertisement for psychiatric drugs that will lead many people to take these poisons with false expectations–thus undermining their chances of recovering from their distress, discouragement and crises.
Bob Whitaker reviewed Lieberman latest book here: “In sum, Lieberman recounts a story of miracle drugs arriving in psychiatry in the 1950s and 1960s, which brought hope to the hopeless and enabled people struck by serious mental illnesses to live fairly normal lives. That is a story that of course provides great comfort to the psychiatric profession. But, alas, it is belied by the science that can be dug out from psychiatry’s own journals.”
https://www.madinamerica.com/2015/03/shrinks-self-portrait-profession/
I disagree with the conclusions of Larsen Barr but let me address that below.
sf
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The benift/cost evaluation of antipsychotics is not the discussion that should take place. These substances are not medicine, they are toxic substances. Medicine are supposed to do no harm at all and toxics do harm per default. Doctors are lying when they call these substances medicine.
Administering medication is a different thing that administering neurotoxins. The former should heal, the second is punishable as a torture crime.
A patient might claim benefit, the doctor is punishable for using a toxin instead of a substance that cannot do harm.
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Many drugs that have benefits also do harm. However, this article does not address the accepted harms of these drugs – tardive dyskinesia, metabolic effects. None of that is factored in to the strong recommendation that they are started early and continued indefinitely. This treats psychosis as a homogenous experience with homogenous risks. That does not comport with my experience.
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No, psychosis is not a homogenous experience with homogeneous risks. Severe distress varies along a continuum from the most regressed, presymbiotic, disorganized, terrified and nonfunctional cases at a given time, up to more related, symbiotic, functional, cases where the anxiety can be managed. The diagram in this article shows why psychosis is not one unitary thing:
https://bpdtransformation.wordpress.com/2015/03/19/23-the-borderline-narcissistic-continuum-a-better-approach-to-understanding-diagnosis/
And again, to drug a person at any point along this continuum is not to treat a disease, but simply to numb that individual to their experience.
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I’d call this an intriguing and much needed post. At least somebody is asking how people respond to neuroleptics. 1/3 think them beneficial, 1/3 have mixed feelings about them, and 1/3 see them as harmful and unhelpful. This is kind of like “recovery” rates, given conventional “treatment, where 1/3 “improve”, 1/3 stay about the same, and 1/3 “go downhill”.
The next question is how other people react in some instances. Family members can be terrified of a relative “going off meds”. Sensational article after sensational article mentions some mental patient who committed an atrocity, and the tag line seems to be, he or she was okay when “on meds”, but he or she wouldn’t stay on them. I would hope this evidence would be able to counter, to some extent anyway, this kind of presumption and bias. There is often, and I know this from first hand experience, little or no outside support to be found for people wishing to come off neuroleptics.
There is this research into how people actually feel about neuroleptic drugs, and there is Robert Whitaker’s investigation of long term studies. Ask people how they feel, and you’ve got the same problem you’ve got with eyewitness testimony. Regardless of what people say, they could be wrong, ergo, ‘to err is human’. The long term studies though say something that it is much harder to argue with. The only question there is when are psychiatrists themselves (Get a load of what Lieberman is saying!) going to start paying attention to the evidence itself, their evidence.
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If you had asked me when I was poly-drugged whether the drugs helped I would have said firmly yes. I was drugged into oblivion, was convinced by my psychiatrist the drugs were saving my life and had no idea the extreme physical and emotional toxic effects were related to the psychotropics. When a neurologist screamed in my face that the psychiatric drugs were killing me then I had a clue (Seroquel induced Akathisia). I strongly doubt the patients filling out this questionnaire understood the ramifications of being on neuroleptics. And I’m saying that because I didn’t.
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I’m glad you point out this limitation. Important to remember that the participants could only comment on experiences they were aware of having at the time they completed the survey, we need to read the range of comments together to form any conclusions. That said, most who gave wholly positive descriptions of the overall subjective experience were aware of the adverse effects when presented with a check-list to prompt them. But subjectively, these were the experiences that these people gave priority to when asked to complete the sentence “Overall in my life antipsychotic medication has been…” For balance, I should also highlight that among those with mixed overall subjective experiences, there was a small number of people for whom the only negative element was the stigma associated with finding antipsychotics helpful. We need to be careful about going down a path of undermining the participants’ capacity to self-report, because there’s a stigmatising history to that line of reasoning, which has seen researchers steer clear of this kind of study, despite good evidence to suggest that this group of people are reliable subjects worth talking to.
I had a number of participants who shared stories similar to yours, which is why I think it’s so important for clinicians to keep asking over time, and you raise an important point about the relationship between information and understanding. It sounds like that neurologist sharing information was a turning point in the way you were able to interpret your experiences and know what you needed. In my experience people often aren’t told much about what to expect (or the alternative options), and aside from the human rights problems with this, I suspect it also prevents people from being able to tease apart what is happening for them and advocate for themselves when it’s needed. Do you think having this information earlier would have helped you? Some prescribers fear that sharing a lot of information about adverse effects might create negative expectations and associated placebo reactions so tend to go light in this area. My assumption is that it’s got the potential to improve people’s outcomes.
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When a person is given psychotropics they may not be aware of the changes in their behavior, their perception and how other people make view these changes. What does a person do when they are not aware the drugs are altering their reality? They turn to the prescribing doctor and if he is not well informed he will pass off someone’s complaints as mental illness.
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That’s the Catch-22–how do you become aware of something of which you’re not aware? (metacognition, perhaps facilitated by meditation and/or metacognitive therapy [done only by a couple guys in Manchester UK afaik?])
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Right now, I have a dear friend who is being killed by the drugs. She has metabolic disorder, her endocrine is shutting down (Hashimotos, adrenal fatigue), has been diagnosed with TBI, suffers huge cognitive deficits, and her opportunities and options are cascading into collapse. She has been on Seroquel for at least 20 years, and various cocktails. Her current cocktail includes 5 drugs.
If you talk to her, she will express gratitude that she does not have intrusive delusions, that her behaviour is under control, and she is thankful for the benzo that can put her anxiety on hold for awhile, and grateful for the Z drug that helps her sleep.
But if you get to know her, and see the 30 point IQ loss, the chronic motor dysfunctions (shaking, jerks), the thyroid difficulties, the inability to address her situation or her problems with anything more than “whatever,” and see the constant drive to suicide, self harm – you will think: this is not a well person.
BUT HER DOCTORS AREN’T GOING THERE. They just treat her, “business as usual.”
That’s the difference between knowing and understanding. She hears me talk about the harm of the drugs – but is so terrified (and conditioned to be so by the drugs) and has suffered akathisia, TD and cognitive decline for at least 20 years. How could she possibly go through this to a life of freedom from the drugs?
Where are the people to help her do this while she is worried about having enough food to eat, or how to pay her bills? This is clearly the result of long term neuroleptic and benzo use – but – how do you save her from what is killing her, when she believes so firmly that she “needs” it?
If she had done this survey, she would have expressed the sentiments and gratitude of the 2nd paragraph above, and it would be up to a clever diagnostician to connect the dots to her massive distress.
BTW, the neurologists who tested and diagnosed her TBI ****DID NOT SAY ANYTHING ABOUT THE 20 YEARS OF NEUROLEPTIC DRUGS AND BENZOS****** instead they are giving her “memory aids” (an iPad) and “coping classes” – but no acknowledgement that the way to survive this is OUT of it.
The drugs cause more harm than good. Especially when you take the long term view into the equation.
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Hi JanCarol
This is a powerful letter. I quoted it–most of it–in my response to Joanna Moncrieff’ s article in this issue of this blog–see “front page” here.. I was surprised that Joanna defended long term use of “anti-psychotics” for “some” people–in an article that cogently argued neuroleptics caused brain-damage. My response to that is like yours. The psychiatrist/therapist cannot be impartial. She either encourages or discourages dependence on harmful drugs that have NO value in long-term treatment.(Actually UI don’t think neuroleptics should be used at all)
Seth
[email protected]
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With schizophrenia syndrome, this 1/3, 1/3, 1/3 ratio, is also the one you’d get if you didn’t treat any of the patients at all (Bleuler, 1913).
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I believe that research would need to be done on the subject before such a sweeping statement could legitimately be made. Nature and time, I hear, can effect wonders. My view is that ceasing to use psych-drugs in itself would most likely improve outcomes, although perhaps not as dramatically as some people might desire. Open Dialogue, taking another approach, one that is less prone to use neuroleptics in excess, reportedly has a 80 % success rate. Take that, 33.3 %!
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First of all so called ‘anti psychotics’ should be called neuroleptics because the purpose of these drugs is to diminish what we can do uniquely as human beings namely to create, understand, love, reflect, and live consciously. We are blessed to be able to take our important place as part of the creative energy which continues to move the universe. Neuroleptics are capable of interrupting this universal energy when they are given to struggling people who are in the wrong place at the wrong time.
People who are labelled by psychiatry are given these drugs without informed consent and they are known to cause a chemical lobotomy. Many are forced to receive them for their own ‘good’. They do cause both ( typical and atypical) many torturous motor disturbances such as Tardive dyskinesia, Dystonia, Akatisia and Parkinsons. However because of their spell binding effects many people who experience these effects might not be even aware! I was one of them. Just like physical lobotomies these drugs can be a form of torture, assault and battery.
It is a measure of our lack of mutual support and solidarity that some of us feel we have to resort to prescribing or consuming these synthetic, man made poisons. Let us encourage each other to feel the grace we all possess within us so we are able to overcome the trials we will find on our individual life journeys.
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First of all so called ‘anti psychotics’ should be called neuroleptics because the purpose of these drugs is to diminish what we can do uniquely as human beings
Or maybe all psych drugs should be broadly referred to, a la Breggin, as “neuroTOXINS”? (PB has said this is how neurologists would classify them.)
What is the etymology of “neuroleptic” btw?
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“Nerve seizing.”
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I completely agree re neuroleptics being the better term. I could go on and on about the history of the terms we use and have used. Very interesting to me that the first terms included ‘major tranquilizer’, a much more accurate description than antipsychotic, and similar in meaning to neuroleptic. I used the term most people will recognise straight away, and it bugs me that I perpetuate the bad terminology in my effort to be accessible and concise.
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I would hope that both >oldhead< and Miriam will endorse my self-coined term/"diagnosis" of:
IATROGENIC NEUROLEPSIS.
Thank-you.
~Bill./
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Do you have a problem with “neurotoxin”? It’s pretty all-encompassing.
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These studies also generally fail to distinguish between SYMPTOM REDUCTION (usually the clinician’s goal) and QUALITY OF LIFE (usually the client’s goal). If you focus only on symptom reduction as an outcome measure, neuroleptics will be judged “beneficial,” at least in the short term. But if you look at quality of life measures, it appears that neuroleptics are at best of limited use, and more likely generally destructive. I think that’s where a lot of the conflict and confusion comes in – psychiatrists are often only concerned with making the “symptoms” go away, and frequently have little to no concern for long-term quality of life outcomes.
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Nail. Head. I did a fancy pants QOL regression for my thesis, and taking antipsychotics did not make a significant independent contribution to predictions of QOL, while occupational status, social support and coping all did. And then I also interviewed this small group of women who had all successfully stopped and they all spoke about the importance of having been able to accept ‘symptoms’ aka their difficult internal experiences, and do something with them, rather than trying to stop them from ever happening or trying to make them go away immediately. Perhaps symptom reduction could even be unhelpful as the ultimate goal, it could be having this paradoxical effect such as we get with the famous thought-stopping experiments (in short trying to stop thinking of a white bear makes us think of them more often and triggers off all our physical stress responses because we transform the thought into a threat). In this light, symptom reduction could be viewed as encouraging people to engage in experience-stopping. Focusing solely on symptom reduction seems to feed into the idea that mental-health problems are aberrant conditions, that symptoms are somehow abnormal and we are failing at recovery when they appear or re-appear.
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Thank you! This was my experience as well. Learning to make meaning of my symptoms so that I could cope with them, learning to understand what had happened to me in terms of social dynamics and putting my life into a greater political context, those were the things that allowed me to develop effective coping skills. I could do all the BCA’s I wanted and containment and guided imagery and other “coping skills” but they did crap all to help me. I started getting better when I met a socialist from another country who explained things to me like income inequality, social control, political unrest, etc. once I was able to put my struggles into a context that helped me understand why the system isn’t interested in helping child abuse victims or rape victims or domestic violence victims, I became empowered to help myself and others free themselves from the tyrannical forces that create the systemic social injustices most of us live under. Coming off the meds was easy at that point. Once I was empowered, everything changed for me. I was able to cope then with uncomfortable symptoms because I understood how entirely normal they were given my prior experiences.
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Your comments also remind me of the qualitative study showing that “psychotic” people in countries where voice hearing was accepted or even valued as a special gift had friendlier voices, whereas ones where “psychosis” was rejected and feared had scarier experiences. It appears the social environment not only affects the presence of voice hearing, but also the quality and content of the voices! So your thesis makes total sense – it may be that suppressing the voices may be the WORST approach we could take!
—- Steve
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Since psychiatrists love to tout the explanation that “mental illnesses” are just like physical illnesses, I challenged mine about this notion of “symptom reduction” being a good thing this way:
Okay, so somebody says they are having chest pains. You do NOT tell them to take painkillers for the rest of their life and if the pain is deadened, (i.e. “symptom reduction”) then treatment goals have been met and they are a-ok. You investigate the SOURCE of the pain, because you recognize it is an indicator that something is wrong and needs to be addressed; whereas if you just send them off with a drug to numb the pain, the underlying cause is going to get worse, and the heart attack that could have been prevented may well kill them.
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And how did s/he respond? Did logic actually have any positive effect?
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They were explicit about only looking at psychosis but then they make not note of this as a limitation in interpreting thier study.
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I don’t think it is scientifically valid lumping all the drugs together under the description of “Anti psychotic”. Anti psychotic is not a chemistry word it replaced Neuroleptic for marketing purposes, Neuroleptic originates from the Greek word νεῦρον neuron “nerve” and λῆψις lepsis “seizure” in reference to its neurological effects.
Beer wine and liqueur are all alcohol beverages containing ethanol but for example Seroquel and Zyprexa are two completely different chemicals that produce different effects both on them and during withdrawals.
The fine print on all psychiatric drugs says “mechanism of action is unknown”.
There are thousands of testimonials online from years of people writing in those forums about both those 2 drugs, negative testimonials about Seroquel are usually mild “Seroquel sucks, I did not like it” but Zyprexa stories are absolute hellish nightmares.
I think we would all be doing a better service by taking on these so called anti psychotics one drug at a time.
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I was on Seroquel and Zyprexa (not at the same time) and they obliterated me. I may never know which was the worst of the two but I ended up in the ICU with Seroquel Induced Acute Pancreatitis and my family was told I wouldn’t live.
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I got pancreatitis from Zyprexa but of course they found a way to blame alcohol. That really hurts till the IV dilaudid, did not think anything could make that pain stop. Then of course the liquid meals and all that. Then a few days in the seizure at the nurses station cause my complaints of benzo withdrawal were obviously labeled ‘drug seeking’ and they denied me.
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I had a tube in my nose for quite some time. The upside was I lost a lot of weight.
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Great post, thank you. I found it fair and balanced.
I’ve hesitated to jump into this thread because my feelings about antipsychotic treatment has varied over the years from believing they were helpful despite the extreme side effects to believing they are almost universally harmful. Until I learned that my “bipolar” hypomanic and dissociative symptoms were actually a result of the ssri’s I was being treated with (instead of addressing ongoing trauma), I did truly identify as having a brain illness and thought the antipsychotics were necessary medicine. Once I realized what had been done to me by the system, I still had difficulty grasping just how much cognitive function had been lost due to the treatments. A full year off these poisons now and I’m livid and incensed at how much damage was being done. I couldn’t even follow a conversation a year ago and therapy was useless because I would have to frequently ask to be reminded what the topic of discussion was. These neurotoxic drugs are simply tools of social control. I am willing to believe that they lessen severe distress in the very short term for some people (I suspect those on very low doses) but I have difficulty believing that they are ever truly beneficial, and I fervently believe that empowering depressed/psychotic people is far more effective in the long run.
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Hi Miriam,
I responded to this article on the ISPS forum (www.isps-us.org) with a rant about how deadening symptoms over the short term has nothing to do with improving long-term functionality and quality of life. Similar to what Steve McCrea said. I thought you might like to see:
———-
it’s worth pointing out that the main reason Jeff Lieberman is spinning the data like this is to maintain his (illusory) status as a doctor treating brain diseases, and to keep the cash coming in from the drug companies for his research. And when one defines what the “benefits” of antipsychotic drugs really are – keeping people quiet and dulling their feelings to the point they don’t bother themselves or anyone else – it all ends up looking pretty pathetic and awkward.
I can’t resist mentioning here that in his recent TIPS paper, Jan Olav et al quoted Bola and Leucht as having proved “the undeniable efficacy of antipsychotics”. But again: the efficacy in doing what? The answer is keeping people quiet, compliant and tranquilized for a short period, and has nothing to do with understanding the patients’ experience or what they might want socially or vocationally in the longer term.
As to the question of whether antipsychotic drugs make most people more functional in the long-term and help them to develop loving, trusting relationships… well, I think we can answer that based on our own experiences. Ironically, Jan Olav’s study answered that, too, because 10 years down the road more than 70% of the TIPS study’s patients in Norway were still drugged up and barely functional. So much for “undeniable efficacy”.
While I know some people don’t like these blunt discussions, I think the worse attitude is when we cannot have an honest discussion about what drugs are actually doing (treating a disease process versus tranquilizing). Such a discussion, while painful and awkward for those giving the treatment, should include looking directly at the drugs’ impact on the brain, and how taking them is linked with functional and social outcomes (or not) in the long term… Again, the current discussions around “medications treating symptoms” have little or nothing to do with what is good for patients, and everything to do with the need to prop up the drug industry and maintain professionals in their privileged social positions. It’s really pretty embarrassing when you strip away the fake euphemistic language and look at what is actually going on. No wonder people in the field don’t want to talk about it openly. I’d be ashamed too, and I wouldn’t want to talk about it if my professional status and my ability to pay my mortgage and car payment depending on not upsetting the apple cart.
This morning, I was driving near a private mental hospital here in DC, and was thinking the best thing that could happen in the short term for our mental health system here in Washington DC would be if all the mental hospitals burned to the ground. Because at least then for a year or two, until the facilities were rebuilt, patients would be spared from being locked up all day in a drugged-up haze, and the professionals would be spared from babysitting patients while doing absolutely nothing to understand their life situation… which to be fair is really not their fault either, because no one has taught them how to build a relationship with seriously distressed people, or even that doing so is possible.
It is truly amazing the degree to which the disease model and drug-first treatment ruins professionals’ ability to engage and understand clients as people. In Washington DC, at this point, the “mental health treatment” at our DC public and private hospitals (I’ve seen the inside of both) has deteriorated to such a point that there can be no redemption, resurrection, or fixing of the system toward person-centered treatment at all. The voracious weeds of profit-seeking and group-self-delusion have so thoroughly choked the life out of mental health treatment here in DC that there is going to be no turning it around, probably not for decades or ever. That’s why it would be better to simply burn down our hospitals and give people a break, especially considering that most patients, and many professionals (some of whom I’ve talked to) hate being at these institutions. At least then it would be a year or two until the rent-seeking corporations rebuild the mental prisons so they can take in more poor people to drug.
Ok, time to get back to real life.
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Too far off topic = deleted.
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Well, apparently not everyone shares your opinion.
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I strongly disagree with your conclusion, Dr Larsen-Barr–on scientific and ethical grounds. Although you do not mention Robert Whitaker’s name– he created this blog– your conclusion directly contradicts the implications of Bob’s surveys, and of the explicit conclusion he has drawn from them.. Dr Peter Breggin’s position is I think(I have not read him in a few years) at least as radical (compared to current practice) as Whitaker’s. You seem to be taking the Allen Frances’ position, what Frances calls “the middle way.”
But the merit of your epistemological considerations do not abrogate the weight of the evidence–evidence of brain damage– indicating, as Whitaker has urged, the immediate necessity on humanitarian and ethical grounds of stopping and discouraging long term use of ‘anti-psychotic” drugs for all patients! (It is indicated also by Matt Stevensen above, but for some reason he seems to overlooked your conclusion.)
You write,”The only way to determine whether the benefits are outweighing the costs is to ask the individual experiencing them, and to keep asking over time. ” No! This is a cop-out, superficially libertarian! Bob’s conclusion is not premature. If anything it is belated. Psychiatrists said quite bluntly when neuroleptics were first introduced in the mid-1950s that they produced a “chemical lobotomy.” Over and over this was said in the 1950s–in praise of the new drugs! We have long known about the ravages of tardive dyskinesia–even acknowledged by the APA in its mid-90s Task Force report. We know now about other iatrogenic effects of neuroleptics–thanks to Whitaker and Breggin.
Your conclusion sounds fair and even libertarian —and obviously some in patients rights’ movement will applaud this position–but you are not doing patients any favor. The majority of patients are NOT well informed–unlike the psychiatric survivors who post on this blog. There is no informed consent. They are not informed about the risks of neuroleptics, the inevitable harm, and like most people they trust their “doctors”–the authorities. The information most of them will have will be given to them by liars and drug-pushers like Jeffrey Lieberman, former APA President–the same Lieberman you criticize. Patients who trust their doctors will claim the drugs help them (we know the power of the placebo effect) –but their satisfaction will not prevent them from experiencing the longer term effects of brain-damage, and the longer- term symptoms of complete social and vocational impairment.
The small group of dissidents who post here cannot prevent the mental health colossus from continuing to push neuroleptics. But we can do our best to warn clients and advocate against anything other than very brief use of these drugs. (Other drugs are less toxic. and less discomforting.)
Must we sit by and/or interview clients about whether they like the brain-damaging toxins their trusted doctors assure them are necessary for their recovery while another generation of patients’ lives– the lives of so called “psychotics”(and even infants now, allegedly at risk for psychosis)— are destroyed? Do we need yet another generation of guinea pigs before we admit that neuroleptics ruins lives? Whether you know it or not this is what you are advocating, Dr Larsen-Barr.
Lieberman undertook this survey in an attempt to undermine the conclusions of Bob Whitaker whom he called on the radio a couple years ago ” a menace to society.” These drugs pushing psychiatrists are a menace to society.
Whitaker writes about the middle way you and Frances propose, “Prescribe them to the right patients, because for these patients the drugs can be life-saving, but curb the overuse and polypharmacy…But, here’s the rub: the “middle way” he describes is not an evidence-based practice…It is not a practice that is informed by science that tells of drugs that induce a dopamine supersensitivity, which may increase the biological vulnerability to psychosis; or of science that tells of drugs that shrink the brain, with this shrinkage associated with worse negative symptoms and functional impairment; or of animal research that tells of why antipsychotics fail over time; or of science that tells of much higher recovery rates over the long term for unmedicated patients. Those are drug effects that are not immediately visible to the clinician, but rather are made known through the illuminating powers of science, and they pertain to those with “clear cut psychiatric disorders” too.”
It is imperative that all critics of psychiatry do everything they can now, before it’s too late, to discourage long-term use of neuroleptics by ALL CLIENTS. I hope you will read Robert Whitaker’s work on this topic –or if you have a critique of his findings and/or conclusion then express it directly in an article here– and reconsider your own position.
Seth Farber, Ph.D.
http://www.sethHfarber.com
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Not to mention that there is no objective way to even approach determining who the “right patients” are except by giving them the drugs and seeing what happens. And the claim that they are “life-saving” flies in the face of the horrific early death rates for those taking the major tranquilizers aka “antipsychotics.” I agree 100% – it is the responsibility of the medical and psychological professions to actively discourage the long-term use of these agents and to explore other options that are more likely to lead to a real improvement in life quality.
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I suspect my attempt at being concise might have left some gaps that are open to misinterpretation. While I did mention the third of participants who reported positive subjective experiences, the focus of this blog was on the two thirds with mixed or solely negative experiences who are not acknowledged by the meta-analysis, and who I’m sure we all agree absolutely need to be asked what they experience and listened to when they talk about that – there is a large group who were able to report on these experiences, and their clinicians should be asking them and not assuming ‘everything is fine, because a meta-analysis told me so’. My hope was to convey the message that the benefits certainly do not outweigh the risks for at least a large proportion of those who take antipsychotics. I stopped myself from going on to talk about the related issues of supporting people to withdraw, and informed consent because there is so much to say about them this post would have become unwieldy in length. I didn’t address the issue of whether they should be prescribed in the first place because I was focused on the issues faced by those who have already been prescribed them, and speak of curses, burdens, and hell. I would have done a disservice to those participants who spoke of antipsychotics positively, if I had silenced them the way the Goff et al study and the articles promoting it have attempted to silence those whose lives have been made worse by taking antipsychotics long-term.
Like others you raise the important issue that people are only able to report on things they are aware of. It is also a real problem that most people are given little information about the adverse effects and are left ill equipped to interpret and perceive them when they happen, not to mention the power inequalities that prevent people from self-advocating and professionals from listening when people do speak up.
When I wrote, “the only way to tell… is to ask the person experiencing them and to keep asking over time”, I wish I had expanded on what I believe needs to involved in the asking. The act of asking questions is an information-bearing exercise that if done well has the power to help address the issue of our limited self-awareness; the questions we ask and the way we ask them can guide people towards perceiving things they might otherwise have overlooked or been unaware of e.g. From broad open questions into more focused questions like, What is it like to take this medication? What does it do for you? Does it cause you any problems? How does that affect your life? Has it changed your appetite or the way your body puts on weight? Some people have said they feel like zombies, have you noticed yourself feeling groggy, slowed down or sedated since you started the medication? Has it stopped you from feeling your emotions properly? Have you got the same drive to do things? Some people lose their sex-drive, or ability to get an erection, have you started having any new sexual problems since you started the medication? Do you feel like you are in charge of taking it? … into desire and plans to stop, and when/how to do this, withdrawal effects that might occur etc.
Having this kind of conversation, would inform people of what is important, it would convey that the clinician takes the person seriously, it would convey the message that this clinician is interested in listening to the answers, and share information that there are other options and support available to stop. You are correct that most clinicians are not currently doing this, and this is a very real problem that causes great harm and in my mind equates with tacit coercion, a human rights atrocity on a grand scale – one which I hope to work towards addressing.
While this blog doesn’t speak to how I think antipsychotics should be used, I would say rarely, other things tried first, full info shared (multiple times given what can be happening at first prescription), very short-term, proper monitoring to reduce and withdraw as soon as possible given all of the well-proven adverse effects, mortality rates etc that come with long-term use; much like the Finnish model. I stand by my statement about giving priority to the perspective of the person already taking antipsychotics – no-one can tell what they are experiencing without asking them, they can form an evidence-based best-guess, but only the individual themselves can confirm if it is the case for them. And if no-one asks them these questions, no-one is telling them these things are important. And at the moment, hardly anyone is asking people. And when they do ask, they only pay attention to the positive reports, and pathologise or minimise the negatives. I am on somewhat of a quest to help make this change. But I can’t bring myself to do the same thing in reverse to achieve it, and I suspect it would probably hamper my efforts.
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Very well said. Thanks for the clarification!
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Well I’m pleased to see, Doctor, that you changed your position about the protocol that should govern prescription of anti-psychotic drugs.
You had written”The only way to determine whether the benefits are outweighing the costs is to ask the individual experiencing them, and to keep asking over time. A quantitative meta-analysis cannot give us the answer.”
But we do have enough information, enough evidence, now to infer that for “psychotics” as whole the costs of long-term use far outweigh the benefits, which you apparently recognize upon reflection because you now write,”While this blog doesn’t speak to how I think antipsychotics should be used, I would say rarely, other things tried first, full info shared (multiple times given what can be happening at first prescription), very short-term, proper monitoring to reduce and withdraw as soon as possible given all of the well-proven adverse effects, mortality rates etc that come with long-term use; much like the Finnish model. .”
It is important that we take that position now because as Steve McCrea succinctly put it,”there is no objective way to even approach determining who the “right patients” are except by giving them the drugs and seeing what happens.” That is even if we assume there are some individuals for whom the benefits outweigh the cost–an assumption I do NOT accept– we have no way of knowing whom they are without subjecting many more individuals to these gargantuan costs.
I agree with your argument (as I interpret it) which you make very persuasively that phenomenological inquiry greatly adds to our knowledge base, and our understanding. And that it also can be valuable as a tool for conveying information. But still the evidence we have –and it includes many autobiographical accounts–leads inexorably to the conclusion that the costs of long term use outweigh the benefits.
I personally cannot see any one would lose if long term use were phased out entirely–except the drug industry and greedy shrinks. Yes I know there are people who claim they benefited. But I submit that these are individuals who trust the mental health system–and thus were beneficiaries of the placebo effect–and are largely unaware of all the costs. I’m sure there were many patients who believed they benefited from lobotomies.
Hopefully your research can help elucidate WHY patients feel they benefit from long-term neuroleptic usage, i.e. chemical lobotomies. I hope you will
explore with them their feelings about their psychiatrists and about the mental health system as a whole. Also that you will explore how taking the “anti-psychotics” influenced their relationships with their psychiatrists AND all their family members. If you ask the right questions you will be able to test my theory, my conviction, that the positive effects of anti-psychotics have nothing to do with the intrinsic (“therapeutic”) properties of the drug (at least not beyond the “side effects” convincing them it’s a powerful “medication”) and everything to do with the psychological(including the interpersonal) effects of taking their “medication.”
Since you did not mention any questions along these lines, I hope you will consider adding such question to your inquiry. I agree it will tell us a lot more than we could learn by more conventional kinds of research. (Yes I know the converse is true–that those who have adverse effects are likely to be persons who are critical of the society in which we live–and thus less trustful of doctors.) And I look forward to learning the results. .
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This was just the tiniest portion of a much larger project – the whole title was Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation. A survey was used to do a quantitative QOL study, and qualitative studies of taking and attempting to stop antipsychotics, and then I did follow-up interviews with a small group of women who had successfully stopped to explore how they maintained their wellbeing during and after withdrawal. The study is complete now, but I continue to carry out further analysis. You can read the thesis on research gate at the link in the article.
In my QOL study, taking antipsychotics had a *negative* bivariate correlation with QOL but did not make any independent contribution to prediction of QOL over and above age and occupational status when it was entered into a hierarchical regression. There was a negative bivariate correlation between taking antipsychotics and being involved in occupational activities, which I plan to explore further in the near future, see whether the relationship stands up to more rigorous tests. But this part of the research also counters the meta-analysis claims. I could have gone on and on about this subject. More posts will come. Am a bit distracted by trying to get the withdrawal results published at the moment, it’s just so important.
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I cannot tell from your abstract how long beyond a year the discontinuers had gone. But the most impressive studies in Whitaker’s review lead one to expect positive results(measured behaviorally) from discontinuing would not show up before two years at the earliest.
I wonder whether you take fully into account the pressures on patients to stay on drugs and the social isolation that can result from getting off. You do state you assess social support–but this can be subtle. For example if they are living with family members(parents or partners) who
invalidate them or withhold support.
I suppose in America there is a larger patients’ rights movement than there was 20 years ago and there is Internet–but still I think most people are unaware of alternatives. So their family members are not likely to support them getting off their “meds.” If there was more support it would be easier for discontinuers.
I do not get the impression from your abstract that you fully take all the relevant factors into account–but the abstract may not give a full picture. “Few people reported being well-informed of the potential benefits and risks. .. Most experienced both benefits and adverse effects. Most (79%) had contemplated stopping AMs, and 73% reported making at least one attempt, with variable preparations, methods and outcomes described. ” The first sentence has to be an understatement. Here in US i think virtually all psychotics are told by their shrinks that it is very dangerous and harmful to go off their “meds.” So they are not warned if they do try they should do it gradually. I imagine it is about the same in NZ. Considering these pressures, it is amazing that a full 73% try to get off drugs–thus defying I would guess their shrinks.
You imply in your article that for some people it is true that the benefits outweigh the long term costs. I do not believe it. As you also say,”Nor was the possibility that unmeasured psycho-social factors might account for the variation in outcomes these studies observed.” My theory–conviction–is that in every case like this there are these psycho-social factors attendant on the use of “medication”–and that is these factors–including placebo and nocebo– that account for the apparent long term benefits. Of course even if there were a tiny group of genuine benefitters, there would be no justification for long term use of the drug because there is no way to identify members of this group in advance. But with education and social support we could get the benefitters
off the “meds” so they don’t have to pay the costs.
Of course this is impossible in a mental health system controlled by the drug industry where all patients are pressured and forced to take drugs that cause a chemical lobotomy. THose who resist are labeled non-compliant and subjected to forced drugging under State orders.
Seth
“Since quality of life is associated with coping and social support, treatment systems cannot rely solely on medication to produce positive outcomes for those who take AMs. “
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In the interview study (ch 7) they had stopped for 1.25 – 25 years. In the survey, (ch5) it ranged from months to years, with around 50% stopped for over a year, many for five years or more, I can’t remember that stat off the top of my head. Despite the time range, no one described being worse off after stopping.
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Dr Larsen-Barr, you write:
” The act of asking questions is an information-bearing exercise that if done well has the power to help address the issue of our limited self-awareness; the questions we ask and the way we ask them can guide people towards perceiving things they might otherwise have overlooked or been unaware of e.g. From broad open questions into more focused questions like, What is it like to take this medication? What does it do for you? Does it cause you any problems? How does that affect your life? Has it changed your appetite or the way your body puts on weight?”
I’m sorry, this seems so naive to me. These are the kinds of questions that my suffering friend has been asked for decades. It has not resulted in any acknowledgement or change to her treatment for her to say, “Oh, I’m gaining weight, I’ve got diabetes now, I keep shaking, I cannot hold a coffee cup without spilling.” She has interdose withdrawal anxiety, akathisia, tardive dyskinesia, and is it any wonder she is depressed and afraid to interact with her fellow humans?
Instead each descriptive is treated – not as ‘quality of life’ issues – but a symptom, and so – an anti-seizure drug is added, or increase in antidepressant, or more anti-anxiety medicines – or a visit to the nutritionist (when really, diet and exercise do not address psych drug induced metabolic disorder), or a script for Viagra or Addyi for sexual dysfunction.
Your questions are still talking about symptoms which are effects of the drugs. These effects are diagnosed by mainstream doctors as “disease based symptoms” (“Oh, she’s relapsing, she’s getting worse again”) and more drugs are added, more diagnoses are added, and a life is ruined.
The drugs and their effects are like a giant elephant in the room. A whole fricking pack of elephants. A cocktail of elephants. My friend got an extensive neurological evaluation for Traumatic Brain Injury – and received a positive diagnosis for TBI – but not a word was said about what these drugs have done to her brain, her nervous system, her endocrine system, her cardiovascular system, her eyes, over the last 30 years. Not a whisper.
Now granted, they didn’t know her (like I did) when she was young and bright – maybe they think she’s had a cognitive struggle her entire life, and her “lack of coping skills” contributed to her “biological mental illness.” – but I’ve watched it happen. I’m trying to find hope for her now, something she can hold onto to pull herself out of this morass – but she is not supported by her doctors, only drugged., and she is so deeply spellbound (as Breggin would say) by the drugs, that the terror of coming off – in the face of all her other problems right now – is frightening to the extreme. More than she can handle in addition to her full plate of problems.
Doctors have her down as someone who has “responded well to treatment.” It has not helped her at all to have this evaluation.
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Yeah the conversation can’t just end there at ‘what is happening’ and it usually does, if it even gets that far. If you return to my comment you’ll see I described a guided set of questions to uncover adverse effects leading on to a conversation about actually doing something.
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I was coerced into taking them as “major tranquilizers,” convulsing in the corner, they increased the dosage. Take them to your peril, a chemical lobotomy I’ve been bestowed; they do indeed give them to elephants. My life as a promising geologist was ruined once I submitted to the criminal cartel of a state hospital, where (I did not know) illicit street drug dealing was taking place. This whole argument, is inane. If you bludgeon someone on the head senseless and convince them they are “better,” they will believe it (if you bludgeon them hard enough). Far cheaper, but not very profitable (except to disable for the same reasons these drugs are used). What humane conceivable argument could be made for damaging a persons brain intentionally? I was “spellbound” for 30 years, I didn’t know it, until coming through a paradoxical Hell of withdrawal that would make the cruelest person blush, alone in my pain and suffering mostly. I hope Larsen-Barr will be spared, and yet I still live with the dammed consequences that Dr. Breggin elucidates (I saw him as a patient, his videos are more convincing, books are more than accurate about these neurotoxins). You propose academic arguments, I’m not your lab rat anymore. It’s all about power and manipulation, look to yourself. I will die a free man, and you, will glorify yourself again within a sick corrupt material society, profiting from the delusions and agony of human subjects. There is and never has been any reasonable or scientific (beyond poor middle school science) argument regarding DSM’s “mental disorders,” merely people emanating psychological reactions to physiological and psychological stress. What more is there to debate? Is deceiving people “for their own good,” remotely anything another human should entertain? Ruined by the deception of “psychology,” what a brutal idiotic waste of time and effort and ultimate detriment to our collective existence. We survivors suffer, die, while the prophesies of men like Aldous Huxley are alive and well. Only psychopaths profit and sustain from a world such as this.
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Psychology+Psychiatry =Mental Health System. It won’t be long, when Psychologists will start pre-scribing *meds* on large *scale* and their tolerance towards *illegal* drugs is main reason for middle or neutral *position* about use of psychotropic *meds*. Anyway I know who and why started with mind altering project for entire mankind and this trace leads only to one country. And this aren’t USA.
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”The only way to determine whether the benefits are outweighing the costs is to ask the individual experiencing them, and to keep asking over time. A quantitative meta-analysis cannot give us the answer.”
If you asked me this question while I was taking a neuroleptic I would not be able to answer it correctly because of the damaging cognitive effects of the neuroleptic. Also it is very clear to me now 17 years free from all prescription, synthetic drugs that when I was given neuroleptics for the first time short term that they actually caused some of the symptoms that I feared the most such as Akathisia and being completely unaware of many actions I was performing. I have read about them in my notes and it is hard to believe that it was actually me they were talking about. Sometimes also actions like falling on the ground, due to low blood pressure caused by their drugs, was viewed as if I was looking for attention!!
On reflection of my whole life history and I am now approaching 70! I never displayed any unusual symptoms only when I was on psychiatric drugs!
This is a subject you rarely hear discussed by doctors. It is a fact that the drugs can cause people to behave in anti social ways. Neuroleptics can cause terrible adverse effects even in short term.
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Zyprexa causes suicidality
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To date, not one single person from any global drug regulatory agency has been able to tell me of the benefits of SSRIs. The same question should be asked of antipsychotics. As advocates we have, for many years now, focused on the risks of these types of meds, and rightly so. We seemed to have overlooked what is staring us in the face – ergo, what are the benefits of these drugs?
11 years corresponding with the British drug regulator, the MHRA, and they still cannot provide me with one single benefit of SSRIs, kind of absurd given that drugs are granted a licence based on the benefit/risk ratio.
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FYi regarding your comment about Ana Sandoiu’s quotation of Lieberman. Her quotation is accurate and seems to have been Lieberman’s intent. Here is a link to a press release by Columbia University Medical Center, that has the quote: https://eurekalert.org/pub_releases/2017-05/cumc-boa050217.php
Lieberman said in the press release:
“The evidence from randomized clinical trials and neuroimaging studies overwhelmingly suggests that the majority of patients with schizophrenia benefit from antipsychotic treatment, both in the initial presentation of the disease and for longer-term maintenance to prevent relapse. . . . Anyone who doubts this conclusion should talk with people whose symptoms have been relieved by treatment and literally given back their lives.”
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Well, it’s obvious that he’s never taken any of the drugs or he wouldn’t be saying this. If the treatment is so wonderful why do so many people quit taking the drugs when they get loose from the “hospital”? Lieberman is nothing but a talking head.
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25-30 years ago, Lieberman participated in “research” that sought “to deliberately provoke psychotic symptoms” in schizophrenic patients. He conducted methylphenidate challenge tests for more than a decade.
Here is a sampling of three articles where Lieberman was a co-author of studies where methylphenidate was given to schizophrenic patients in order to activate psychotic symptoms.
In a 1987 study (https://www.ncbi.nlm.nih.gov/pubmed/2886110), 34 stable outpatients receiving neuroleptic treatment were given an infusion of methylphenidate and then withdrawn from their neuroleptic medication. Three weeks after they were withdrawn from their psych meds, they were given another infusion of methylphenidate. Then the unmedicated patients were followed up for 52 weeks—or until they relapsed; in other words their symptoms returned.
A 1994 study (https://www.nature.com/npp/journal/v11/n2/pdf/npp199440a.pdf) had a similar methodology, 41 stable patients receiving neuroleptic treatment were given an infusion of methylphenidate. They were also withdrawn from their neuroleptic meds and followed for 52 weeks, or until relapse.
In a 1990 study (https://www.ncbi.nlm.nih.gov/pubmed/2236460), 38 patients who met the criteria for schizophrenia or schizoaffective disorder were given an infusion of methylphenidate, followed by a regimen of standard acute neuroleptic treatment. This time the patients were individuals who were experiencing their first acute episode of psychosis. The methylphenidate produced an increase in psychopathology reflected by a worsening of their symptoms.
Another 1987 article (https://www.ncbi.nlm.nih.gov/pubmed/2884687) with Lieberman as a co-author was a meta-analysis of 36 studies that used psychostimulants (PS) in schizophrenia. The authors noted that non-amphetamine drugs like methylphenidate appeared to have a greater “psychotogenic potency.” In other words, they elicited a greater psychotic reaction than amphetamine drugs. “Approximately 40% evidence a psychotogenic response to PS administration in doses that are subpsychotogenic in normal’s.” Don’t miss the fact that Lieberman knowingly used a psychostimulant in his own studies that he knew would elicit a greater, more intense psychotic reaction than amphetamine drugs.
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In 1998 Robert Whitaker co-wrote a series of articles on psychiatric research for the Boston Globe (the series was a finalist for the Pulitzer Prize for Public Service). The first installment of the series, “Testing Takes Human Toll” was published on November 15, 1998. In this article (http://web.archive.org/web/19991008230951/http://boston.com/globe/nation/packages/doing_harm/day1.htm), Whitaker and others described how beginning in 1972, psychiatric researchers used a variety of agents such as methylphenidate (Ritalin, Concerta), ketamine, and tetrahydrocannabinol (THC) “to deliberately provoke psychotic symptoms in more than 1,200 schizophrenic patients.” In some cases, the level of psychosis experienced by these patients was called “severe.” Jeffrey Lieberman was one of those researchers. So Lieberman’s dislike of Whutaker goes back 20 years.
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Dear Diary, (30 years ago when I was 29) I feel great on this drug called Lithium. It is helping me so much with my eating disorder. I heard something today from another patient about it causing kidney problems later in life. I wonder if that’s true. I never heard that from the doctor, so probably it’s a very rare side effect. Funny how thirsty I feel. I wonder if J’s worries about kidneys were part of his mental illness. He keeps talking about the harms that these medications can cause. I guess he has a lot of problems….
I seem to sunburn a lot from the other pills. They said I could get Tardive Dyskensia, but not till I’m in my 50’s, so not to worry. I’m not worried, I’m only in my 20’s now, i’m only concerned with how I feel now. Why worry about what happens when I’m an old lady? I’ll never get to be THAT old. Gee, that’s way too far away to worry about.
Today I filled out a survey they gave us. I put 100% for all of my pills. I wonder what J put. Boy does he have serious problems……I’d better get something for this sunburn, geez…
Love, Julie
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Thank you for patients perspective on medication. One third are satisfied, one third very dissatisfied.
However what would happen without or very restricted use of antipsychotics?
Is it possible to give a rough guess on the long-term effect of antipsychotics on recovery?
Antipsychotic medications are viewed as cornerstones for both the short-term and long-term treatment of schizophrenia. The evidence for symptom reduction will be critically reviewed. Are there benefits in terms of recovery?
Leucht et al has 2009 found (How effective are second-generation antipsychotic drugs? A meta-analysis of placebo-controlled trials) the effect NNT(Number Need to Treat)=6 for short time treatment (1). However this was looking at 50% or more reduction of symptoms on the Positive and Negative Syndrome Scale (PANSS).
Leucht et al 2012 looks at maintenance treatment with antipsychotic drugs. Between 7 to 12 month are covered. The results published are better but conclude that it is necessary to “clarify the long-term morbidity”.
Bola et al. Cochrane.org 2011 (5) found just 5 studies with real placebo, i. e. RCT (Randomized controlled trial). One of them Rappaport et al 1978 found that umedicated patients managed better, e. g. readmission into hospital. NNH turned out to be 2.9 (NNH= number need to harm).
The Council of Evidence-based Psychiatry exists to communicate evidence of the potentially harmful effects of psychiatric drugs to the people (3).
Nancy Sohler et al. gives 2016 this summary: «For many years, this (…)clinicians’ belief in the need for long-term use of antipsychotic medications strong (Lehmann, 1966) that it has been impossible to design a sound observational study to address the question of efficacy or harm … (O)ur study also could not conclusively evaluate whether long-term antipsychotic medication treatment results in better outcomes on average. We believe the pervasive acceptance of this treatment modality has hindered rigorous scientific inquiry that is necessary to ensure evidence-based psychiatric care is being offered.»
So I understand there are nearly no RCT controlled studies (avoiding «cold turkey» problems) answering my question on recovery.
Real world outcomes and results
However is it possible to use other studies to evaluate effects based on other studies and real world results?
WHO Cross-Cultural Studies, 1970s/1980s found (Jablensky, A. 1992, Hopper, K. 2000): 16% of patients in the developing countries were regularly maintained on antipsychotics, versus 61% of the patients in rich countries. 63.7% of the patients in the poor countries were doing fairly well at the end of two years. In contrast, only 36.9% of the patients in the seven developed countries were doing fairly well at the end of two years. In the developing countries, 53% of schizophrenia patients were “never psychotic” anymore, and 73% were employed. In the rich countries, only 37 percent of the patients had good outcomes, and 59 percent had become chronically ill.
Naturalistic studies of e. g. Harrow, M. & Jobe, T.H. (2012), Harrow et al 2014 (11), Wunderink (4,7) and Wils et al 2017 show that patients do better without long-time antipsychotic medication. Harrow, M. & Jobe, T.H. (2017) concludes in “A 20-Year multi-followup longitudinal study assessing whether antipsychotic medications contribute to work functioning in schizophrenia”:
“Negative evidence on the long-term efficacy of antipsychotics have emerged from our own longitudinal studies and the longitudinal studies of Wunderink, of Moilanen, Jääskeläinena and colleagues using data from the Northern Finland Birth Cohort Study, by data from the Danish OPUS trials the study of Lincoln and Jung in Germany, and the studies of Bland in Canada,” (Bland R. C. and Orn H. (1978): 14-year outcome in early schizophrenia; Acta. Psychiatrica Scandinavica 58,327-338) the authors write. “These longitudinal studies have not shown positive effects for patients with schizophrenia prescribed antipsychotic for prolonged periods. In addition to the results indicating the rarity of periods of complete recovery for patients with schizophrenia prescribed antipsychotics for prolonged intervals, our research has indicated a significantly higher rate of periods of recovery for patients with schizophrenia who have gone off antipsychotics for prolonged intervals.”
Jaakko Seikkula et al 2010 (Journal Psychosis Volume 3, 2011 – Issue 3) has reported on long-term outcome of first-episode psychotic patients treated with Open Dialogue Therapy in Western Lapland approx. 80% recovery (6). “Showing the benefit of using not much medication supported by psychosocial care.” 19% were on disability allowance or sick leave with 17% ongoing neuroleptics. Sveberg (2001) reported 62% on disability allowance or sick leave following standard care and 75% ongoing neuroleptics (11). Disability allowance or sick leave goes up more then 40%.
The effect of cognitive therapy (8) and psychotherapy (9) is documented.
Bjornestad, Jone et al. 2017 reported “Antipsychotic treatment: experiences of fully recovered service users”: “(b)etween 8,1 and 20% of service users with FEP achieve clinical recovery (Jaaskelainen et al., 2013)” under the profession’s current protocols.
Approx. 60% or so of first-episode patients may recover without the use of antipsychotics (Whitaker 2017).
In order to maintain the narrative of antipsychotis beeing “effective” schizophrenia is falsely declared chronic i. e. drug dependence is preferred over recovery.
Now I know this guess is not exact science, but does it seem that approx. 40% of patients subject to regular medication (e. g. in Norway “National guideline for diagnosis, treatment and follow-up of individuals with psychotic disorders”) loose long-term recovery compared to non-medicated patients?
Would this be a fair guess of the long-term effect of antipsycotics on recovery?
Alternatives to medication
Morrison et al. 2012 (8) concludes «A response rate analysis found that 35% and 50% of participants achieved at least a 50% reduction in PANSS total scores by end of (cognitive) therapy and follow-up respectively» i. e. NNT=2 for «follow-up» with cognitive therapy. Antipsychotic drugs perform NNT=6 according to Leucht et al. 2009. This shows Klingbergs conclusion (9): “In conclusion, psychosis psychotherapy does not have an evidence problem but an implementation problem.”
Choice
Patients have a right to know in advance to decide with informed consent the benefit of actual symptom reduction in the beginning at the price of long-term reduction of recovery. Where there is a risk there has to be a choice.
I would appreciate your answer based on your knowledge of studies. Thank you in advance.
http://home.broadpark.no/~wkeim/files/question-recovery.html
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The United Nations Special Rapporteur on the right to health Mr. Pūras has called for «World needs “revolution” in mental health care». “There is now unequivocal evidence of the failures of a system that relies too heavily on the biomedical model of mental health services, including the front-line and excessive use of psychotropic medicines, and yet these models persist”
Open Letter to Donald C. Goff, Peter Falkai, Wolfgang Fleischhacker, Ragy R. Girgis, Rene M. Kahn, Hiroyuki Uchida, Jingping Zhao, Jeffrey A. Lieberman, Kim T. Mueser, US National Institutes of Health
Copy: UK National Institute for Health Research, Norwegian Psychiatric Society (NPF), TIPS, UiO: NORMENT: Norwegian Centre for Mental Disorders Research, OUS Section for Treatment Research, TIPS early detection in psychosis, Ingrid Melle, Jan Olav Johannessen, Erik Johnsen, Health directorate, Norwegian Institute of Public Health
TAU falsified: Suggestion of further research with focus on recovery
I appreciate your constructive contribution: “Strategies for treatment discontinuation or alternative nonpharmacologic treatment approaches may benefit a subgroup of patients … More research is needed to determine whether some individuals may respond to alternative pharmacologic or nonpharmacologic treatments for a first episode of psychosis…” (Goff et al. 2017: The Long-Term Effects of Antipsychotic Medication on Clinical Course in Schizophrenia).
Based on:
– size of antipsychotics effects,
– increasing focus on recovery
– falsification of current paradigm (Treatment as usual) i. e. recommendation that all individuals with new-onset schizophrenia should receive acute and maintenance antipsychotic treatment
further research is suggested with focus on recovery.
Effects of Antipsychotics
Antipsychotics are used to ease symptoms (Leucht et al 2009: NNT=6) and to prevent relapse (Leucht et al 2012: NNT=3) with evidence at the beginning of the psychosis for a minority of patients. There is no evidence that antipsychotics promote “psychosocial functioning, professional functioning, and quality of life” (Buchanan et al 2010 PORT Treatment Recommendations). Bjornestad, Larsen et al. 2017 admit that evidence of long-term maintenance medication is missing: “Due to the lacking long-term evidence base (Sohler et al. 2016) …” Current use of neuroleptics has been criticised. Studies show the advantage of a shift to minimal doses for fewer patients over a shorter period of time.
Recovery
Recovery is used in several meanings and has gained attention and has now become mainstream. Both the United States, Canada, New Zealand, Australia, the UK and Ireland are building their national strategies on recovery. The Norwegian Government’s Strategy for Good Mental Health (2017-2022) “Mastering Life” is based on WHO’s Action Plan 2013-2020 and The European Mental Health Action Plan 2013-2020 and EU JOINT ACTION 2016. The Norwegian Mental Health Expansion Plan mentions the needs of the user/patient as a starting point, “mastering one’s own life”, “successful return to working life” and “entering into a social relationship with family and friends” (Ottar Ness 2015). Recovery rates decreased: «17.7% in studies between 1941 and 1955, 16.9% in 1956–1975, 9.9% in 1976–1995, and 6.0% in studies after 1996» according to Jaaskelainen et al. 2013.
Harrow et al. 2007, Jääskeläinen et al. 2013, Harrow & Jobe (2017), Wunderink et al 2013, Wunderink 2019 look at recovery.
Naturalistic studies of Open dialogue reported good outcomes looking at recovery, reduces schizophrenia per year and reduced disability benefit. The evidence in support of OD has been criticised being of low quality, and randomized controlled trials are required to draw further conclusions.
Falsification of Treatment as usual
Tomi Bergström, Jaakko Seikkula et al. 2018 (1) compare FEP Open dialogue patients with all FEP patients in Finland over a period of 19 years. Open dialogue (OD) uses neuroleptics for 20% of patients in the beginning, standard treatment (CG control group) 70%. 97,3 % of the CG get neuroleptics at some point. At the end 36% of OD patients use neuroleptics, for CG it is 81%. Disability allowance, readmission and patients under treatment halves with OD, reflecting better recovery. This register study bypasses ethical and feasibility problems og long-term studies.
This register study reflects reality/facts about Finland on national level. Treatment as usual is falsified as the most effective treatment. RCTs could give further information which of Open dialogues approaches e. g. reduction of antipsychotic medication, immediate help within 24 hours, social network perspective, dialogue etc. contributes to the good treatment results.
Studies to find out why Open dialogue promotes recovery
Scientific studies can only explain reality not disprove. Respect of reality could considerable improve treatment and health of patients. Therefore I have asked Norwegian research institutions in 2018 to do further studies on a shift of Paradigm: Can Open dialogue improve recovery rate, reduce schizophrenia per year and reduce allowance/sickness?
Later a “Call for Studies to Find out why Open Dialogue Achieves better Results” to US National Institutes of Health, UK National Institute for Health Research Norwegian Psychiatric Society (NPF) and NORMENT: Norwegian Centre for Mental Disorders Research has been made: http://wkeim.bplaced.net/files/recovery-call.html .
Both National Institute of Health Research (NIHR) and The Institute for Dialogic Practice, Northampton MA already conduct research.
Would research with focus on recovery on the basis of exploring promising treatment results of Open dialogue be the way forward to promote and improve patients health?
http://wkeim.bplaced.net/files/Suggestion%20of%20further%20research%20with%20focus%20on%20recovery.html
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