In April of 2017, the FDA approved valbenazine (Ingrezza) as a treatment for tardive dyskinesia (TD), a neurological disorder featuring Parkinsonian-like involuntary movements, which is found in many people who have taken antipsychotic medications for a prolonged period. From the perspective of the FDA, which in 2014 had designated valbenazine as a “breakthrough therapy”—a designation that speeds up the approval process—the launch of Ingrezza marked a major milestone. “Tardive dyskinesia,” stated Mitchell Mathis, M.D., director of the Division of Psychiatry Products in the FDA’s Center for Drug Evaluation and Research, “can be disabling and can further stigmatize patients with mental illness. Approving the first drug for the treatment of tardive dyskinesia is an important advance for patients suffering with this condition.”

Two months later, Mathis—along with four of his colleagues at the Center for Drug Evaluation and Research at the FDA—published an article in America’s premier medical journal, The New England Journal of Medicine, “Efficient Trial Design—FDA Approval of Valbenazine for Tardive Dyskinesia,” which heaped effusive praise on the drug’s manufacturer, Neurocrine Biosciences of San Diego, CA. As the authors declared in a sentence that was turned into a pull quote, “A pharmaceutical company with no products on the market was able to navigate regulatory demands effectively and develop a novel treatment for an iatrogenic condition first identified more than 50 years ago.”

According to Mathis and his FDA colleagues, Neurocrine blazed a trail that other drug companies would do well to emulate. “An important lesson for drug development,” they concluded, “is that creativity and partnership [between the FDA and drug companies] in both development and review can effectively overcome long-standing clinical challenges.” For Neurocrine, as the authors acknowledged, this partnership entailed special privileges; for example, only one phase 3 trial was required to provide evidence of Ingrezza’s efficacy—instead of two, as is typically the case.

Ingrezza has already been phenomenally profitable. Sales of the drug in 2019 amounted to about $750 million—up from around $410 million in 2018. And Neurocrine CEO Kevin Gorman believes that blockbuster status—sales of $1 billion or more—is easily within reach, as the untapped market for the drug remains significant. As he stated in January of 2020, “We still have a lot of work to do as a majority of people suffering from tardive dyskinesia remain undiagnosed and untreated.”

From Neurocrine’s informational page for Ingrezza

Likewise, the second FDA-approved drug for TD, deutetrabenazine (Austedo), which Teva Pharmaceutical Industries Ltd—the giant American-Israeli joint venture, whose US headquarters are based in Parsippany, NJ—rolled out in August of 2017, brought in about $410 million in 2019. In a call with analysts in late 2019, Teva CEO Kare Schultz said he eventually expected Austedo sales to reach $2 billion a year. The prospect of huge profits is why Teva was willing to shell out $3.5 billion in 2015 to gobble up Auspex Pharmaceuticals, a company whose only major asset was deutetrabenazine, a compound then already undergoing Phase 3 clinical trials.

While the two new TD drugs are both destined to boost the bottom-lines of their respective manufacturers, they will do so at considerable expense to both patients and society. The retail cost of a standard dose of each drug, for one patient, is about $80K a year.

Moreover, this steep price can hardly be attributed to the huge drug development costs often required to produce major innovations. Although the FDA classified Ingrezza as “a breakthrough therapy,” the first TD drug out of the gate, like the second, bears a close molecular resemblance to tetrabenazine, a generic drug, initially discovered in the 1950s, that has long been used to treat TD on an off-label class. All three drugs—Ingrezza, Austedo and tetrabenazine—belong in the same class—VMAT2 inhibitors.

“Both new TD drugs are what Marcia Angell [the former editor of The New England Journal of Medicine] has called ‘me too drugs,’ meaning that the only advance is a small tweak of an existing compound,” said John Abramson, a lecturer at Harvard’s Chan School of Public Health and the author of Overdosed America: The Broken Promise of American Medicine (2008). “And the reason they both cost so much is that American drug companies, in contrast to their counterparts in other wealthy countries, have the power to charge whatever they can get away with. And a hundred thousand dollars a year or more is not uncommon—particularly for new brand-name drugs that can be marketed as specialty drugs.”

The “specialty” designation is supposed to apply to only a small number of complex compounds designed to treat complex conditions, but in practice, it applies to various expensive new drugs such as the TD drugs.

According to its mission, the FDA strives to be “responsible for advancing the public health by helping to speed innovations that make medical products more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medical products…to maintain and improve their health.” Yet, with the two new TD drugs, questions abound.

Do they constitute a significant innovation? And by forming a close partnership with Neurocrine and fast-tracking the new TD drugs, has the FDA succeeded in helping the public get the accurate information it needs about TD to improve their health? Or has the FDA instead helped promote disinformation, as industry critics allege?

This last question is critical, as there is overwhelming evidence that a series of aggressive (and sometimes illegal) marketing campaigns that drug companies rolled out to sell their “atypical” antipsychotics helped cause the very “epidemic of TD” that the industry is now profiting from.

Me-Too Drugs Are Recast as Novel Agents

In their efforts to explain why the two new TD drugs, which they typically refer to as “novel VMAT2 inhibitors,” are more effective than their generic equivalent, the psychiatrists who recommend them struggle to make a convincing case. In a 2019 article published in The Journal of Clinical Psychiatry, titled “FDA-Approved Medications to Treat Tardive Dyskinesia,” Joseph McEvoy from the Medical College of Georgia, argued that the “[two] new medications can be life changing for individuals with TD.” The primary reason why the two new drugs “are believed to be better treatment options than off-label tetrabenazine,” he wrote, is “due to tetrabenazine’s pharmacokinetic profile that requires higher, more frequent doses.”

In a recent phone interview, McEvoy added a few details about his reasons for supporting the new TD drugs. “Due to its short half life, tetrabenazine,” he stated, “has to be taken three times a day. And since people with severe mental illness are often very disorganized, it’s difficult to get them to do this. In contrast, Austedo needs to be taken twice a day, and Ingrezza just once.”

McEvoy has served on the advisory board for both Teva Pharmaceuticals and Neurocrine Biosciences. According to ProPublica, he received roughly $32,000 from Neurocrine in 2018.

In its updated practice guideline for the treatment of schizophrenia issued in the fall of 2019, the American Psychiatry Association (APA) also highlighted the shorter half life of the generic tetrabenazine as a major disadvantage. Below a chart summarizing the features of the three drugs such as the dosing requirements, the roughly dozen authors, who participated in the committee’s deliberations, concluded, “In general deutetrabenazine [Austedo] or valbenazine [Ingrezza] is to be preferred over tetrabenazine because of the greater evidence base.”

This begs an obvious question: why is there considerably less scientific evidence about a generic drug that has long been in use? When asked for an explanation, Sheldon Benjamin, a professor of psychiatry and neurology at the University of Massachusetts Medical School in Worcester, who served on the APA’s schizophrenia practice guideline committee, said that although “tetrabenazine, which the FDA has approved to treat involuntary movements associated with Huntington’s disease, has been used quite a bit over the last few decades to treat TD, there was never any funding to do large-scale trials to determine its effectiveness for this indication. In contrast, the two new TD drugs have both been studied extensively.”

These comments simply point out that the makers of the new TD drugs had more financial resources to devote to research and say nothing about whether the generic, which has been approved for TD in several foreign countries, is less effective in reducing TD symptoms. In fact, a 2017 meta-analysis published in The Journal of Comparative Effectiveness Research, which reviewed prior studies of both tetrabenazine and Ingrezza, noted that the 12 studies of the generic all “demonstrated significant improvement in TD.”

The APA’s framing of the state of the scientific literature on TD, whereby more evidence is readily understood to be synonymous with significantly better evidence, has recently been critiqued by Jeffrey Lieberman, a past president of the APA. In a lecture delivered in 2019, “Explaining the Renewed Interest in Tardive Dyskinesia,” Lieberman linked the steadily increasing number of publications on TD in psychiatric journals over the past few years—22 in 2015, 31 in 2016, 54 in 2017 and 61 in 2018—with the approval of expensive brand-name drugs. “Clearly, there has been renewed interest in TD,” stated Lieberman, “mainly prompted by the introduction of new drugs, which have marketing budgets associated with them. It is not all bad, but it just shows you what I think is obvious to people: Money talks.”

As Benjamin also noted in the interview, the American Psychiatric Association’s position is to encourage insurers to cover the new TD drugs, as APA sees it as its mission to make sure that all patients can get access to every FDA-approved drug. At present, most Medicaid plans cover both Ingrezza and Austedo, as do about a third of Medicare plans. And many major commercial insurers have recently added the TD drugs to the other specialty drugs in their formularies.

The Marketing of Atypical Antipsychotics and Today’s “Epidemic of TD”

For the pharmaceutical industry, patients suffering from TD represent a growing stream of potential customers: that’s because the aggressive marketing of the atypicals, which were first launched in the 1980s, increased the overall use of antipsychotics, which, in turn, has led to hundreds of thousands of new cases of TD. And once an adult develops TD, it isn’t likely to go away, so these patients will all require chronic treatment.

There are currently 79 clinical trials that focus exclusively on TD. According to a statement from Neurocrine, which was provided by its PR representative, Spectrum Science, “TD is estimated to affect 500,000 people in the United States; it is estimated that only about 20 percent of patients with TD have been diagnosed, and only half of those patients have been treated with a VMAT2 inhibitor like Ingrezza.”

In a 2017 article that appeared in The Journal of Clinical Psychiatry, titled “Epidemiology, Prevention, and Assessment of Tardive Dyskinesia and Advances in Treatment,” Leslie Citrome, a professor of psychiatry and behavioral sciences at New York Medical College, and colleagues put forth three arguments to support Neurocrine’s claim that only a small percentage of patients with TD have been diagnosed and treated. This is the usual claim that drug companies make when they market new psychiatric drugs; the irony in this case is that Neurocrine is arguing that the number of people suffering from this iatrogenic neurological condition was much greater than psychiatry, as a field, had long recognized.

Citrome’s paper appeared shortly after both new TD drugs were approved by the FDA. According to ProPublica, in 2017, Citrome received about $718K from drug companies, including $24K from Neurocrine to promote Ingrezza and about $4K from Teva to promote Austedo, and in 2018, the corresponding figures were $686K in total, including $126K from Neurocrine and $97K from Teva. It is meant to be a paper that supports the expanded use of the TD drugs, without placing any blame on the industry—and the field of psychiatry—for both creating and spreading this neurological disorder.

Here are the three arguments made in the paper:

Argument number one: The second-generation antipsychotics turned out to cause more TD than was originally thought.

When the first generation antipsychotics were introduced in the 1950s—namely, chlorpromazine (Thorazine) and reserpine—psychiatrists quickly saw that these drugs induced Parkinsonian symptoms (known as extrapyramidal symptoms.) Patients often exhibited many disabling motor movements: jerky movements of arms and legs, facial grimacing, and so forth. But it took some time before psychiatry began to realize that these immediate drug-induced symptoms could lead to a permanent neurological condition, which they named tardive dyskinesia, meaning “later onset” of such motor dysfunction. One of the most common symptoms was a rhythmic thrusting of the tongue.

As psychiatrist Peter Breggin, who wrote a chapter on tardive dyskinesia in his book, Brain-Disabling Treatments in Psychiatry (1997), and has testified in numerous cases on behalf of plaintiffs who have sued drug companies for causing disabling TD, put it in a recent interview, “TD is not so much a side effect as a main effect of antipsychotics. It’s something that they typically cause. And drug companies know this, so they rarely contest it.”

In the 1980s, after all of the first-generation antipsychotics, including the biggest seller, haloperiodol (Haldol), which was approved by the FDA in 1967, had lost their patent protection, drug companies reasoned that they could best market their successors—the second-generation antipsychotics or “atypicals”—if they could claim that these new drugs—Risperdal, Zyprexa and others—were much less likely to cause Parkinsonian symptoms as well as TD. As the atypicals appeared on the market in the mid-1990s, the press touted this supposed breakthrough. As the Associated Press reported in its 1994 article announcing the FDA’s approval of risperidone (Risperdal), which was featured in The New York Times business section, this drug “reduced side effects, like uncontrollable muscle rigidity, tremors and body shakes, that are caused by antipsychotic drugs.”

But by the early 2000s, psychiatrists began noticing that the older antipsychotics were often given in much higher doses than the newer drugs and that when this factor was taken into consideration, there was little difference in the TD rates between the two sets of drugs. As Stefan Leucht, a psychiatrist at the University of Munich, and his co-authors concluded in a 2003 paper in The Lancet, “New Generation Antipsychotics Versus Low-Potency Conventional Antipsychotics: A Systematic Review and Meta-Analysis,” mean doses less than 600 mg/day [which is less than the typical dose often given to patients] of chlorpromazine or its equivalent had no higher risk of [TD] than new generation drugs.”

A couple of years later, a large study funded by the National Institute of Mental Health (NIMH)—known as the CATIE study—also found that the older drugs did not cause much more TD than the newer drugs. The authors of the CATIE study also reported that one of the key reasons why drug companies were able to tout significant differences was that they used particularly low doses in their clinical trials. As they reported in 2005 in The New England Journal of Medicine, “The dose ranges approved by the FDA for quetiapine [Seroquel] and ziprasidone [Geodon] may be below their optimal therapeutic doses, and the recommended doses of risperidone [Risperdal] (6 mg per day or less), intended to limit extrapyramidal symptoms [a group of side effects that includes TD], may not encompass its full therapeutic range.”

The CATIE study has been widely accepted as definitive, and it is what Citrome was referring to when he wrote that the “decreased risk [of TD] was less than originally expected.” However, another way of looking at the matter is that in rolling out the atypicals, drug makers engaged in an aggressive marketing campaign that went beyond the science and was later refuted by more rigorous research.

Argument number two: Because the indications and off-label uses for these agents [antipsychotics] have expanded over the last two decades, a larger number of patients are receiving antipsychotic medications than in the past.

This assertion is true, but it ignores a dark chapter in the marketing of atypical antipsychotics. The driver for this expanded use of antipsychotics over the last couple of decades has also been the industry’s aggressive marketing campaigns, for which several  companies have been repeatedly sanctioned.

Take the case of risperidone (Risperdal), which Johnson and Johnson released in 1994. As Steven Brill reported in his probing 2015 feature entitled, “America’s Most Admired Law Breaker,” when launching this atypical, the company sought to expand the market beyond just the patients with schizophrenia who had used its first-generation antipsychotic Haldol. Based on his review of internal documents, Brill found that “the business plan…projected an average of more than $1 billion in U.S. sales of Risperdal every year through the turn of the century…That meant that Risperdal would have to be used by tens of millions—not simply a portion of the one percent of Americans having the most severe psychotic disorders.”

To achieve these results, Johnson and Johnson engaged in behavior that is prohibited by the FDA. It encouraged doctors to prescribe the drug for indications—say, dementia—for which it had not been approved. For these illegal activities, the company was eventually fined over $3 billion.

The makers of a few other second-generation antipsychotics have also been fined for similar illegal behavior. For example, in 2009, Eli Lilly was also forced to pay $1.4 billion for marketing olanzapine (Zyprexa) to elderly patients with dementia and to children.

Despite these hefty penalties, these unethical marketing campaigns turned out to be a success in the long run. According to a 2011 study, antipsychotic use for indications without FDA approval more than doubled between 1995 and 2008. The estimated revenues associated with off-label use in 2008 alone amounted to $6 billion.

Even though this illegal promotional activity stopped several years ago, its after-effects are still being felt. The reason is that the FDA does not prohibit doctors from prescribing drugs for off-label use. “Once this type of misinformation gets into the ether, it’s difficult to root it out, and prescribing doctors often rely on what they once heard from drug company reps rather than on what they read in the scholarly literature,” stated Adriane Fugh-Berman, a professor in the department of pharmacology and physiology at Georgetown University, who directs Pharmed Out, an initiative designed to advance evidence-based prescribing among health care providers.

The argument made by Citrome and colleagues in their paper implied that this expanded use of antipsychotics typically benefits these non-psychotic patients, and that the increase in TD is a risk offset by those benefits. Yet, as Richard Friedman, a professor of psychiatry at Weill Cornell Medical College and a New York Times columnist, warned, the use of atypicals to treat various forms of anxiety was a “worrisome trend” due to the lack of convincing scientific evidence of their efficacy for this purpose and the potential hazards with long-term use, such as TD.

The makers of atypicals did manage to get FDA approval for a few new indications for antispychotics, such as an adjunct to antidepressants in the treatment of severe depression or for suicidality. But as Consumer Reports concluded in 2011, “the available evidence indicates that antipsychotics aren’t very effective at treating ‘resistant’ depression and aren’t the best choice for this use for most people” on account of the serious side effects.

Neurocrine, the manufacturer of Ingrezza, is adamant in advising patients, who have been prescribed antipsychotics for anxiety or other off-label uses and are now suffering from TD, not to go off these drugs.  “Stopping or switching your antipsychotic medication [regardless of what the medication is being used for] may not be an effective way to manage TD,” it warns.

Argument number three: Patients with chronic psychiatric conditions often require long-term use of antipsychotics, putting them at risk for TD.

This argument ignores the wealth of research questioning whether the long-term use of antipsychotics is actually effective. The longitudinal study of psychotic patients conducted by psychologist Martin Harrow, a professor in the department of psychological and brain sciences at Indiana University, found the opposite to be true.

Harrow summarized one of his major findings in a 2018 letter to the editor in World Psychiatry, “We also compared a good‐prognosis sample of patients prescribed antipsychotics for 15‐20 years with a good‐prognosis sample of patients not prescribed antipsychotics for 15‐20 years. In both comparisons, those patients not on antipsychotics for 15‐20 years had fewer symptoms and better outcomes after the first 2‐3 years.”

As can be seen, taken together, the three core arguments mentioned in the Citrome paper are meant to present TD as an unfortunate but necessary risk associated with drugs that nearly always provide a clear benefit to patients. But the paper ignored the long-term research on outcomes with antipsychotics, and the fact that the expanded market for TD drugs arose, in part, because of the industry’s aggressive—and sometimes illegal—marketing of the atypicals. Likewise, for Citrome and colleagues, the new TD drugs can also be understood to constitute an unequivocal scientific advance in psychiatric care.

Exculpate the Antipsychotics and Blame the Patients

Industry-affiliated psychiatrists have also attempted to shield the antipsychotics from responsibility for causing TD by blaming the neurological impairment on the faulty genes of affected patients. In a recent article, “Advances in Tardive Dyskinesia: A Review of Recent Literature,” in Psychiatric Times, Brian Miller, a professor of psychiatry at Augusta University in Georgia, argued that some patients have a genetic makeup that puts them at high risk of developing TD.

Miller estimated that the prevalence of TD in patients diagnosed with schizophrenia was 8.3 percent. He based that figure on a 2019 French study of over 600 patients, 90% of whom were taking atypical antipsychotics. In the introduction to this six-page lit review, which is followed by a two-page ad for Neurocrine’s Ingrezza, he wrote, “Meta-analyses have identified several risk genes for TD with moderate effect sizes.”

In an apparent nod to the tentative nature of these findings, Miller characterized all these risk genes “as potential candidate genes associated with TD.” A half page below these words, he included a table that alludes to roughly a dozen risk factors for TD—including various widely accepted ones such as increasing age and illness duration. Nevertheless, the factor mentioned at the very top of Miller’s list is genetics. 

The Selling of the Disease to Doctors and Patients

For decades, TD was a neurological condition known only to the psychiatrists who treated patients with severe mental illnesses. The conventional wisdom was that in order to prevent the development of TD, psychiatrists should rely less on the antipsychotics that cause it. As a 1988 article published in Acta Psychiatrica Scandinavica concluded, “TD is best prevented by a course of neuroleptic medication involving…minimal doses and shortest possible length of treatment. The main TD treatment principle consists of a gradual dose reduction, possibly over years.”

Even though the antipsychotics are now widely prescribed and TD is more common than it was a generation ago, the American public still knows relatively little about this iatrogenic condition. With the approval of the new TD drugs, the manufacturers see a need to introduce TD to the culture at large. But this messaging involves not so much explaining the disease as selling it. “These public education campaigns can be extremely effective because it appears as though the drug companies are just passing on public health information. But this is rarely the case,” said Adriane Fugh-Berman, the drug industry critic at Georgetown University.

The makers of the two new TD drugs are targeting two group in particular with their PR campaigns: doctors and psychiatric patients (and/or their caregivers). To influence doctors, the two TD drug companies are funneling money to a large number of them.

According to ProPublica, in 2018, Neurocrine paid $6.2 million to approximately 7000 doctors, most of whom are psychiatrists, for promotional activities related to Ingrezza. Likewise, in 2018, to promote Austedo, Teva shelled out $6.05 million to slightly over 8000 doctors. The amount varied from a high of a little over a 100K to psychiatrists like Citrome who conducted extensive research to a low of about $15 to psychiatrists who might have received a free lunch from a drug rep. “Research shows that even doctors who receive small payments are likely to change their behavior by prescribing more of the company’s drug,” said Fugh-Berman.

The number of doctors getting such payments from the companies—many of whom, like Citrome, are getting payments from both companies—represents a significant percentage of America’s roughly 40,000 licensed psychiatrists. These payments, Neurocrine stated, in its prepared response, are “standard practice in the industry,” noting that “these healthcare professionals…are compensated for their time and expenses for research, scientific studies and educational speaker programs.”

To reach patients, Neurocrine has begun an expensive national TV ad campaign, which includes one-minute spots such as this ad. 

 

 

 

 

 

 

 

 

In the ad, a patient diagnosed with schizophrenia who is experiencing TD says, ”I know I shouldn’t change or stop my medication, so I was relieved there are treatment options for TD.” The ad directs viewers to consult a website, talkaboutTD.com, which is run by Neurocrine. The page devoted to “Managing TD” features the phrase, “talk to your doctor about treatment options.” Upon clicking the words, “treatment options,” readers are led directly to the website of Ingrezza, where this drug is the only treatment option mentioned.

Neurocrine has also funneled money to numerous mental health advocacy groups, including the Alliance for Patient Access, American Brain Coalition, Caregiver Action Network, Depression and Bipolar Support Alliance, International Bipolar Foundation, Mental Health America, Movement Disorders Policy Coalition, National Alliance on Mental Illness, National Council for Behavioral Health, National Organization for Tardive Dyskinesia, and the Schizophrenia and Related Disorders Alliance. These groups have, in turn, helped Neurocrine get its message out. For example, three years ago, Neurocrine worked with various partners to declare the first week in May “TD Awareness Week”—an initiative that is now recognized by 30 states as well as Washington, DC.

Society Pays the Bill

If present trends continue, within a few years the nation will be spending several billion dollars a year on the new TD drugs. This expense will place a huge burden on society at large. Cash-strapped state governments may well have to increase their Medicaid budgets; private insurers will face a major new drug expense that they will likely pass on to plan members in the form of higher premiums.

From a public health perspective, is this spending on the expensive new TD drugs, which are little different from the generic equivalent, worth it? Would public money be better spent on housing and various support services for the homeless and others suffering from chronic psychiatric ills? And, to take a longer view, given that the TD “epidemic” has been fueled by the increased use of antipsychotics, would it be more “cost-efficient” for society to provide more generous coverage of non-drug therapies for those with common problems like depression, anxiety, and insomnia, as well as for those with psychotic episodes?

“Physicians are often knowledgeable about drugs—but not about the harms that they cause,” said Fugh-Berman of Georgetown University. “So it is not uncommon for them to embrace treating adverse events—in this case, tardive dyskinesia—with another drug. In contrast, both physicians and policy makers are much less likely to think about other ways of reducing the adverse events in the first place.”

The House Oversight Committee has been investigating the soaring costs of prescription drugs, and the new TD drugs provide yet another example of this pressing problem. According to a survey published in Health Affairs in 2019, between 2008 and 2016, the cost of brand-name oral drugs rose by 200% and the cost of so-called specialty drugs rose by 450%. In contrast, during those same years, the rate of inflation as measured by the consumer price index rose by 12%. About a month ago, the House Oversight Committee called the CEO of Teva, which is the maker of the TD drug Austedo, to Congress to explain why his company raised the price of a drug for multiple sclerosis from $10,000 in 1997 to $70,000 today.

The development, approval, and marketing of the TD drugs also provides a case study of a larger ecosystem that fails the public. The FDA often strives to help drug companies get their drugs to market quickly, and once it approves a drug, the companies can use this “seal of approval” in their marketing campaigns. Then academic physicians with ties to the pharmaceutical companies publish articles that tout the benefits of the new drugs in medical journals. And the drug companies then launch their marketing campaigns—on TV, on the Internet, and through patient-advocacy groups—that often masquerade as public health campaigns.

The House Oversight Committee, as it investigates the financial burden that drug companies are placing on the American public, might want to add the new TD drugs to its list of examples to review.

****

MIA Reports are supported, in part, by a grant from the Open Society Foundations

58 COMMENTS

  1. “Stopping or switching your antipsychotic medication [regardless of what the medication is being used for] may not be an effective way to manage TD,”

    That was NOT my experience, being weaned from the psychiatric neurotoxins greatly reduced what was briefly a very serious TD problem. Albeit, of course, the TD was denied as a side effect of the antipsychotics, by my psychiatrist and psychologist.

    Thank you, Joshua, for reporting on this newest scam by big Pharma and the psychiatrists.

    • There is a withdrawal effect which can appear to worsen TD and similar symptoms in the short term. This is one way they were able to lie about the prevalence of these diseases in neuroleptic studies. They made the adverse effects of the drugs appear less likely by making the “placebo” group a group that was addicted to the drugs and went through withdrawal during the study.

      Imagine alcohol companies trying to claim their drug is safe because people addicted had similar adverse events compared to addicts put through withdrawal. “Alcohol addiction saves lives because the placebo group had more deaths during withdrawal.” It would be laughable how illogical it is, if not for society and people religiously agreeing without question.

      • Yes, during my drug withdrawal period, I had a brief, but really nasty, head banging issue. But I just banged my head into pillows, to avoid harming myself. No doubt, there are real problems, both with the psych drugs, and with withdrawal from the psych drugs.

        And I will say, even eleven years off the psych drugs, I still occasionally wake up with a shaky ankle.

  2. The new normal goes something like this: We are selling psychiatric conditions via their treatments (i.e. you need a diagnosis for a treatment). These treatments to manage the psychiatric conditions that go along with the treatments are drug treatments. Long term psychiatric drug use (our sole form of treatment) causes brain damage. Not to worry, we have more drugs to help you manage the brain damage you received from taking our pharmaceuticals. Come off pharmaceuticals? Perish the thought!

    If you’ve seen the recent ads on television promoting TD management, you know we’ve got a problem. How does one get TD? By taking psychiatric drugs. Whether consciously or not, the promotion of TD (brain damage) management drugs is not likely to cause any decrease in psychiatric labeling and the drugging that goes along with it. Quite the reverse. This phenomenon is likely to cause an increase in labeling, drugging, and the brain damage that goes along with them. We have to sell our brain damage management drugs after all, too.

    I’d say that perhaps we need to reconsider the old normal sometime, huh? Is selling a drug to treat the brain damage you got from taking a drug for some psychiatric condition of a dubious authenticity and nature really progress? I think not.

    Thank you for writing this piece. I cringe every time I see the advertisements advertising TD management drugs on television which is about every day of the week now. I’d say, given the massive impending tragedies that are certain to occur as a result, we need to do whatever we might to return ourselves to a more life form compatible, and less harmful, normal.

  3. There was a drug being tested for tardive dyskinesia called Kinecta a couple of years ago. Psychiatry web sites were flooded with patient-recruitment ads. I remember some fancy foot work involving changing end points in mid-trial to create the impression that it worked. As I recall, the ads didn’t mention TD. They just wanted people on antipsychotics.

    The atypical and abnormally awful Ability is a champion at causing akathisia, which is also classed When test as an add-on to antidepressant treatment in depression, 25% of subjects were afflicted. FDA said that was just fine and approved it.as extra-pyramidal, like TD. Agitation or maybe Akathisa is mentioned on the patient insert as a possible side effect, but if at least 25% of those who use it are going to experience hell, a box warning is required in my opinion.

    • Damn BL — where the hell have you been? (I’ll drop you a brief email at your “alternative” address.)

      Back in the day TD was one of the major pitfalls in taking Thorazine and other phenothiazines, and a major focus of the mental patients liberation movement. Shrinks and drug reps tried to downplay it. Now they broadcast it, as they have a drug to suppress its symptoms they can profit from. Two birds with one dose.

      In fact in the late 70’s there was an international movement boycott directed against SmithKline, makers of Thorazine, Stelazine and Prolixin, largely based on brain damaging effects such as TD.

        • Yes that is a myth. This very article sources how the corporate studies claiming this myth compared low dose second generation to high dose first generations neuroleptics in order to claim the second generation was less likely to cause movement diseases. Studies that account for the bias and flaws find the newer drugs cause the same amount of movement diseases.

          The second generation was claimed to differ because the drugs caused serotonin and other chemical imbalances besides just dopamine. Yet when you look at the pharmacological data a lot of first generation drugs also caused more chemical imbalances besides just dopamine. I think it’s also a myth that the second generation is a new drug class. It was just labeled so in marketing because that sold better.

  4. The few studies for the new drugs for TD have the same problems as all psych drugs. They have the same chemical effect as older drugs. Older drugs that had no long term research but were widely used. Some or all people with TD entering these clinical trials had taken the older drugs and therefore a withdrawal effect would occur in the clinical trials. The studies would also be unblinded, cherry picked, short term and have all the other flaws.

    Let’s look at the results of the 6 week clinical trial for these drugs. At 6 weeks the drug caused a 3.2 point reduction on the AIMS scaled compared to a .1 reduction on placebo. They cherry picked 7 out of 12 of the 4 point measures on the scale. The drug at 6 weeks reduced these cherry picked symptoms by 11%. Slightly over 2/3rds of the benefit occurred in the first 2 weeks. On the CGI-TD scale there was no significant difference between the groups.

    Adverse events showed that compared to placebo 1.3% more of those using the drug died, 2% developed akathsia, 3.8% developed a new dyskinesia, and 2.5% developed a painful joint disease. Another effect was sedation which in the short term can mask signs of TD.

    VMAT2 inhibitors like these drugs have an indirect chemical effect of reducing dopamine, serotonin and Norep levels. That is basically what neuroleptics do and we know that in the short term reducing those chemicals masks TD and similar symptoms. Once drug dependence kicks in and the sedation reduced these drugs will make symptoms worse just like increasing neuroleptic dosages masks the symptoms in the short term and worsens long term symptoms.

    I’d bet good money that in 5 years when or if we get long term data we will find these drugs have no benefits and cause massive harm.

    https://pubmed.ncbi.nlm.nih.gov/28320223/

    • Sam plover? Is that an insult or something? Psychiatry has been and is being reformed constantly – encapsulating more mere ‘problems of living’ and more beholden to corporate interests and the influence of rapacious greed.
      Do you honestly think that abolition will in any way improve the lot of people overwhelmed by psycho social traumas and any associated impoverishment and deprivation?
      Psychiatry needs to be transformed. How exactly do you suggest society respond to people trapped in impossible circumstances?

      • Do you think psychiatry, even a transformed, reformed, nicer, better, raked over the coals psychiatry, is the answer? I believe that is why we are here. In fact, psychiatry was never as bad as it is now. This IS the reformed psychiatry. This is society. Oppression simply called itself “doctor”. It sounds better than some other titles.

          • To start with, the very same resources that are available for any disability, diversity or injury. Sidewalks were made graduated in decline so the blind and disabled could partake in actually using those sidewalks. Why do we not design education to include ALL kids? What is this with “design” that only caters to the functional? Why in the world would something called “psychiatry” be involved in MAKING the children fit a mold designed by morons? And you believe that we still need psychiatry for that? Would the answers not lie in changing the design? And that design would stem from a different or an actual understanding of the “problem”. That “problem” could be a whole bunch of things, and could use a whole bunch of supports.
            What if in the future it is a design where only great physical attributes are desired?

            Psychiatry is social control, but not even good at it. Their control is actually responsible for causing way more chaos and disability than there need be. And the public buying into the idea that we need “doctors” for this social control is the problem. By now one would think people would be willing to risk going without these doctors.
            Psychiatry is not an answer to those “services” you speak of. Psychiatry is an answer to a society that cannot be bothered.

          • So when people are at the end of their tether, at their wits end, overwhelmed with their own or others mental distress what sort of system of care do you think should be available for people to turn to? Your not denying the very existence of psychiatric problems now are you? (granted that many (possibly the majority(particularly children)) are treated for problems they don’t have and treatments are heavily bio – bio – bio, lacking adequate psycho social supports and resources) but huge problems which are currently refered to as “psychiatric” exist and individuals can’t cope, what do you suggest we do about them?
            I think that a lot of people’s time might be saved if psyches included the phrase ‘your in the wrong place my dear’ and were able to direct people to appropriate supports/resources and could avoid the pressure to prescribe the latest patented wonder drug but many peoples minds are already quite addled by the time they first meet a mental health worker.

          • @Whatuser: I think you are caught in the same thinking as psychiatrists are… You actually think this way of “helping” is in reality help? That’s the point: It is not! Nobody denies the existence of severe distress, but what you need is time and emotional support. Intersocial dynamics that you need to kind of have in order to acquire practical experience that you can learn from. That might take years, like 10 years or more? Maybe it is so severe that you are not able to work during that time and what you need is the financial support nobody wants to give… Drugging you to a mentally retarded neanderthal is no help for anyone. It might help those people who don’t want to be bothered with it, but these are the last people you should be considerate towards! In fact you make everything worse, because now you are not even capable to think in a higher abstract way; tools you need for your “recovery”.

            I also question the way psychiatrists approach this entire scam. When you are in such a situation you are indeed looking for help; but then you are even more betrayed ontop of your present distress by someone who claimed to help you, but then damages you for life? This can not be real…

            Eventually when you refuse medication you are going to be forced. So the entire point: Nowadays it is not even a matter of choice anymore! Shrinks will drug you against your will, damage you and claim they helped and use their own mental/intellectual capacity to argue these medications do not harm, while you yourself are hindered in proper thinking to argument against it, because you are lacking the strength, will and mental capacity due to the debilitating effect of the drugs. It is a vicious circle and entirely mendacious!

        • I might be tempted to Agree with this answer , except that’s not the question I asked! Do you have any answer for that question?
          What you seem to be suggesting is that those of us overwhelmed by distress should just be abandoned without even the limited levels of support that currently exist?

          • Any of you AP people want to tell me something else I don’t know, maybe by answering the question! I’ve suffered extensive misery as a consequence of psychiatric interventions, I could write the book on abolition but I won’t – something resembling psychiatry would quickly reinstitute itself and anyhow my experience suggests most if not all people arrive in psychiatric services already burdened with trouble. So I’ll ask again for those people suffering profound misery how do you suggest society ought to respond to our difficulties?
            If you don’t respond with some kind of answer I’ll assume you mean to respond by abandoning us all together.

          • I think the problem is connecting psychiatry, which is NOT designed to help people except in the crudest sense of deadening “negative emotions,” and society responding to suffering and misery, which I agree society is responsible to do. In fact, as long as psychiatry is around, our society at large can pretend that psychiatry has the answer and that they don’t need to bother responding to your or anyone else’s emotional difficulties, as they will buy psychiatry’s story that it’s all about flawed brains and doesn’t require any social changes at all.

            As to what society can and should do, I think there is a major problem assuming that there is one answer for all those now considered “mentally ill” by the DSM system. There are many different responses possible, which can be adapted to many different situations. For instance, the main “cure” for ADHD appears to be to restructure schools so that they are more adaptable to the needs of kids. Things like “anxiety” and “depression” can have many causes, and the response should be different for different situations. Does society need to respond the same way to a person in a dead-end job or an unhappy marriage, as opposed to someone abused as a small child, or a person who is being discriminated against systematically because s/he is an immigrant or a black person or a woman?

            Grouping “the mentally ill” together as if “they” are some monolithic entity plays into the hands of the psychiatric community and the drug companies’ needs. It is a false grouping of heterogeneous people into pseudo groups, which obscures any real attempt to analyze and help with a person’s actual situation.

          • @Steve MaCrea, @Diger. These are by and large fair comments. I think we probably agree a lot about psychiatry as it’s currently practised. Here’s the main motives for prescribing psyche drugs in my opinion –
            1. Greed. 2. Wrath 3.Credulity 4.Laziness. 5.Vanity 6.Greed (did I mention greed) 7. Risk aversion. 8.Desperation.
            You will note that none of this much relates to the Dr/patient relationship – The Dr. is motivated by intellectual curiosity to provide solutions and the ‘patient’ usually needs solutions to sometimes quite complex psycho-social difficulties that maybe quite resistant to any obvious course of possible action – So drugs are prescribed.
            Having said that, it seems here that some people seeking the abolition of psychiatry have no viable response to these situations. ie, your responses while welcome do not in fact answer the question asked.

          • I think my response DOES answer your question, and quite clearly. Each person will need something different, and the first error of psychiatry is clumping people together based on how they feel or act rather than on what their experiences, life conditions and motivations are. The only way to help people in distress is to get to know each and every one of them personally and help them figure out their path. It is much more a spiritual than a physiological thing, though physiology certainly does play a role (exercise, sleep, nutrition, etc.) Psychiatry is destructive largely because it invalidates the humanity of its clients in the interests of money and power. Restoring connections and respect and caring leads to a wide range of solutions that depend on the person and his/her situation. There is no “prescription” for mental well being.

          • With all due respect, distress was not always the reason I ended up in the mental illness environment. Most of the time, I was just looking for something and the something was usually the right career or job. And from there, I would be led to believe I needed a “mental health professional” to assist me and from that point I entered the world of psychiatric drugs; which caused me more physiological and other distresses to the point I almost died. Now, each day, I must contend with the brain injury resulting from the years of being “forced” to take these drugs. I realize that some people are in various kinds of traumatic situations; however, I can only say that these drugs and the “talk therapies” they use to defend the use of these drugs will only make it worse. Thank you.

          • Sorry Steve as I was saying by and large we probably agree here on this. My question was for those here who are articulating an entirely untenable stance, defending the indefensible by attacking everyone who suggests a response to life’s most extreme tragic consequences. You cannot wish away these troubling circumstances, situations and mental states by abolishing psychiatry. It would immediately reemerge anyhow as these extreme states aren’t going to go away anytime soon. So please try answering the question I’ve actually asked and tell me how you (@Oldhead,@sam plover etc.) suggest society should respond to these varied troubles without resource to psychiatry.

          • I honestly have not seen anyone saying that a response to life’s tragic circumstances is not absolutely needed. Perhaps you can let me know what quotes or statements lead you to this conclusion? I think there IS a sense in a lot of people that a “professional” response to human distress is condemned to failure from the get-go due to differences in power and intention between the “helper” and the “helpee.” Perhaps that is what you are referring to?

  5. I haven’t read the full article but wished to mention in case this isn’t being covered it isn’t “just” “antipsychotics” that cause TD. Some anti-emetics (drugs for nausea and vomiting) can, “antidepressants” can and I think benzos might be able to as well. If you are not being forced to take a drug always always dig deeper into what it does and if the “side” effects include involuntary movements assume they may mean TD.

  6. At the 8 year mark, being saturated in the toxic sludge that was bipolar treatment, I developed spasms in my left eye. I couldn’t keep it open to see effectively. It was the Risperdal & they abruptly ended it, substituting another terrible drug…..y’all know-the usual.
    See…all fixed!!

    With the ensuing withdrawals, rebound, & adjustment to the NEW drug’s side effects…(y’all know-the usual)…I went to an eye specialist who was unfamiliar with & frightened by any convo about psyche drugs, the usual medical reaction from outside the cult. (Liability issues)
    I went home outraged and terrified for my future independence.

    Not long afterwards, I was sloppily put into anaphylaxis, resulting in the OTHER eye spasm-ing. In desperation, I went to another specialist. THAT guy said the only remedy to my ‘nerve damage’ was to surgically sever the nerves, shutting my eyes permanently, just say the word.

    He hurriedly added “Don’t worry, you can tape them open to your forehead”. I started to panic.

    I knew when I relayed this terrible result from the drugs to the genius prescribing-PA, he would simply offer another drug…the only response to everything discussed with him.

    After 7 months it resolved, but I continue 8 years later, to use eyedrops as the left eye always feels as if there are shards of floating glass under the lid.

    It’s going well, don’t you think?

    The antipsychotics also begat micrography, the tiniest writing imaginable, completly illegible-caused by brain lesions. That finally resolved also, after I was ‘clean’ for 6 months.

    No big deal, right?

    PS. I just LOVE these academic discussions regarding the client’s suffering caused by their fellow prescriber’s.
    ‘Lets investigate who’s profiting & proclaim our shock…let’s acknowledge the ‘problems’ we cause and dither about metrics & data…..lets scold Pharma about those effective marketing ads!’

    And the statements regarding the ‘tapering’ by prescribers when the drugs go bad. NO ONE does that…Yet they preach constantly to NEVER stop the drugs because of the terrible consequences.
    Ummm, we notice the contradiction & hypocrisy…..Jesus, pick a side.

    I watched an ad on TD last week. Two women figures appear and one talks about TD as if it’s no big deal because “It has a name!” as the voice-over lists awful side-effects. The figure cheerfully states there is a drug for that now!

    The other, silent figure is her ‘afflicted’ sister, perched on the couch like a Labrador….apparently the ‘mentally ill’ subject AND struck mute regarding HER suffering.

    It is seriously f*<#ked up. What's new?

  7. I don’t buy this. I looked into Valbezanine a few years back, and it didn’t look too special at all and it seemed that the drug company itself was hinting that it had no long-term therapeutic effect, something that makes sense considering what we know about compensatory adaptations. Worst all off, it encourages doctors to be more reckless in prescribing TD inducing drugs.

  8. I should be deliriously excited about this new and doubtlessly expensive drug, but I came across an article by a Richard Kunin, MD 30 years or so ago about the use of manganese salts (and sometimes niacin) for this very purpose. This can’t be valuable, because members of the orthomolecular community quickly took it up. Besides, it’s cheap, so it defies mainline psychopharmacology, which only seeks to develop drugs more expensive than their predecessors to create their therapeutic breakthroughs.

  9. I have seen those ads. I almost threw something at my tv, but, I can’t afford a new tv. So, I tragically hollered. I had td for a while. The “prescriber” was trying to figure out if I had it before the drugs or because of the drugs. When I stopped the drugs, the td disappeared. Of course, the psychiatric charlatans would deny this too. Thank you.

  10. @whatuse
    Why don’t you tell me all the good things psychiatry does and how they make it a better society?
    Tell me why the kids need them.
    And perhaps you know what makes for a better psychiatry. Perhaps there are things that critical psychiatry
    and all other rethinks have not tried or mentioned.

      • I have never denied the need for support. What if there was a soteria house every few blocks? That lead to: Drop in centers with activities. Ping pong tables. Spiritual houses, not churches. Parenting supports. Income supplements. Fair housing, fair recreational opportunities, cottages and canoeing should not just be an opportunity for certain people.
        Programs should not be a thing one can only access for an appointed time.
        If you give people choices, where will they choose to go?
        The Gerstein center in Toronto is busy 24/7. It is because people don’t want a medical intervention for a stressful reaction.

        What if we had no time limit on how long people had to get their “act together”?

        As a society we are designed in a way that trips people up. We are all unique, we have unique needs. Buckling under a job or relationship is not a weakness nor sickness. We are not all physically equipped to be welders, but we do not call the lack of physical prowess, an illness.
        Not being able to function within the mainstream settings is not “illness” or “disorder”.

        • To which I might add, education, training, healthcare, vocational supports and maybe relocation supports (good old geographical therapy has performed wonders for many pwople down the years) And if someone is in a bullying/abuse scenario criminal justice police support maybe necessary. Thanks.

          • Hello Whatuser, I’m just wondering what stance you actually take on now? Support is fine if it’s within the natural framework like talking and doing activities and alike, but drugging is a no-go? Or drugging is fine?

            In my personal experience of coercive psychiatriy, the typical procedure is as follows: You experience distress to something and you can not work. You are naturally faced with your next best GP who will send you to your next psychiatrist of choice and you will get your sick leave slip so that your insurrance covers the loss of income. In the best case scenario you will have several sessions of talking before anything happens. If by then you have not improved and you don’t want to take medication by choice, what generally follows is the claim of your lack of healthy mental judgement capacity (generally refered to as uncompliance) and you need to be forced for your best interest. That is apparently the standard procedure. As most other variants of help are ok in my oppinion (compatible with your human rights) I’d just like to know what stance you take on this one.

          • @Diger, in short the best way to veiw my position is as stated, I’m an admirer of the PTMF understanding and always keen to respect the environmental, cultural, social context and origins of mental distress. Unlike some here I do believe (as it seems self evident) that some sorts of professional intervention are necessary sometimes even as we currently stand they are at best woefully inadequate if not downright damaging! Even excellent therapeutic interventions dont have the resources available for people in need and indeed don’t even often think of this need so focused on the inner mind are they (not that this is unimportant.) Often these days (how often I don’t know) no intervention is mandated by anything other than resources such as housing, education, training and welfare provision (and not even that sometimes.)
            Drugs: people gave always taken various subsatances to get by which can be a useful or even enjoyable distraction but that’s all it is. Often relying on substances to deal with a difficult existence can ultimately just add to the troubles afflicting you. I feel psyche drugs are mostly prescribed because they are so profitable but there are other reasons which motivate doctors to prescribe them. But do they solve anything or merely act to over up the problem? I’ve certainly rarely benefitted from these drugs and I’ve been forced to take them for nearly 30 years by now. My own struggle has meant that usually I’m on a fraction of an effective dose – I’d be on a least 10 times as much otherwise. But still I’ve lost tears of my life to unnecessary treatments that haven’t worked for me. I’ve asked people why they reached out for a psyche intervention instead of more meaningful resourced support and have received no satisfactory answer. Just insults in fact!

          • @Whatuser: What is PTMF and what does it mean? What you try to adress in your second part of the sentence? I.e. cultural, social and environmental context and origin of mental distress?

            1. So you have been forced to take medication for 30 years straight? What drug? What dosage? I can hardly believe this… My brother is an extremer case and the longest he has been forced to take medication is for about a year, while the court had to reconsider the forced drugging approval every few month. So it is hard to believe they have been forcing you for 30 years straight. Maybe you have been taking the drugs voluntarily and believe they help, as you are caught in the same trap known as medical spellbinding… So that doesn’t prove your point!

            2. Yes, people have always taken some sort of “medication”. But these drugs from (more recent) former times either turned out to be quite damaging (what a surprise…) or they were considered “light” medications as of having hardly any effect compared to these drugs nowadays. In an ancient setting of humans living in a tribe, drugs were probably not given for years straight and I claim that the drug itself had more an effect of a placebo reinforcing the intersocial process that eventually leads to a recovery. So again no pro argument for years of drugging! Hence, the (undoubted) effectiveness of modern drugs (s.a. neuroleptics) would be likely contraproductive as this very effect shields you from this intermediate level of social experiences, such that recovery is basically impossible. So I’m not saying you should never give these drugs for say a few days during extreme situations, but what I’m saying is that you should NEVER give these drugs for durations, s.t. neural adaptions start to occur as this in the long run leads to the often encountered very debilitating effects (even) after withdrawl. So after all, when people take these drugs voluntarily, I doubt they are not elligble to argue pro medication as the very effect of medical spellbinding prevents them from being able to ascertain if the drugs actually help them or not. For that, they have to come off it first, because the level of (self) perception necessary becomes incapacitated on the medication.

            3. In my opinion the latter effect is hardly understood by doctors. You say “…there are other reasons why doctors prescribe them…”: The main reason is, because doctors are (mostly) naturally driven by curiosity and they want to “understand” what’s going on here and there if they play around with the drugs. Unfortunately there is not much to understand and it is far from their wholly original intention to help. Being inable to realize this, just speaks for itself, as they should be the first ones (as professionals) to understand this dynamic, but apparently they don’t. Bascially they are caught in their own “psychosis” and don’t notice it.

            Anyway… Whatever the case, when I say I don’t want to take it (in particular not for longer times) there should be nothing that forces me to do so. If these people think drugging against your will for whatever conceived reason they come up with is help, they are ignoring the very foundations of human rights and there should be nothing stopping you from seeking revenge in order to protect yourself, because I’m sick of these idiots twisting reality. This is not help, but a liscence to legally abuse other people and should be handled accordingly by the court of justice that needs to be established with new principles, since at the moment the state is living in a state of psychosis! Apparently humans are again caught in the same delusional state of affairs as the germans were when they wanted to heal humanity from the toxic jewish blood (before the war began!). I hardly see any difference here!

            Again, I’m not talking about people taking these drugs voluntarily. Everyone is welcome to take whatever he wants; let it be cocaine or heroin. There have always been junkies in the world… But people should be warned beforehand. Instead these (medically spellbinded) people are exploited as promoters/evidence to foster the distorted narrative of this pseudo-science which is outright wrong and corrupt!

          • @Diger. There is much sense in what you have to say but I can’t concur with everything you say. There are understandable reasons people reach out to psychiatry for ‘help’ with their problems, usually a troubled and/ or troubling significant other. Am I correct in assuming you have no direct experience of a psychiatric intervention (ie. as someone who is the recipient of so called ‘care’)?
            Doctors in my experience are skilled members of a helping profession motivated to solve problems. It is strange that the branch of medicine called psychiatry has chosen to take the strategy adopted by substance abusers to help people with whichever conundrums beset them these days.
            And they are rather insistent on it. Can I ask if you feel that anybody can truly volunteer to take their drugs (much different and inferior to drugs of choice ie alcohol) while denied their rights, deprived of resources and possibly threatened with detention (rightly or wrongly) based on the assumed quality of their thinking?
            A simple Internet search or a search of MIA will inform you of PTMF a unique distillation of many views critical of current practise and a structured understanding of how to make sense of the predicament and what to do about it. It’s a work in progress but seems to be a way of developing understandings that might lead us out of the current impasse wherein genuine recovery is proving near impossible for more and more people than previously! Here’s one page from MIA
            https://www.madinamerica.com/2020/07/issues-power-central-understanding-psychological-distress/

  11. @rebel
    I can fully appreciate what you say regarding winding up in unwanted places.
    That is because of the set up.
    How often do people talk to someone they know, family or friends, who then say “you should talk to someone”.
    Talking is not “doing”. And in order to “do”, there need to be places that enable the “doing”.
    The doing is not when family and friends think that support means making a person feel broken or helpless. Yes people need to talk, but what they mostly need is to “DO” stuff together with someone. To experience their own value, in not just being supported, but that others also value their support.

    I realize too that most people learn what is needed, as time passes and we hopefully get wiser, so families and friends can’t be blamed individually. It is very difficult to promote the idea of community in a self preservation minded animal.

    • samplover, You are right about the “doing.” Many of my happiest times were when I was “doing” something with someone or even several people; especially, if I liked the activity or I was treated with respect. I have even had times where the activity was well “boring, etc.” but the person or people I worked with made it easier. Why? We laughed, joked, told each stories, shared things. And, I am what many might consider an “introvert” because I am not usually afraid of my own company. That is, I actually, liked doing things alone, too. But, of course, each one of at times, must work or be around those we feel less comfortable with for a million and one individual reasons. Some would like you to think that there is a separation between being and doing; but, I think that is a highly incorrect assumption. You can not “be” unless you “do” and vice versa. The optimal is when you are “doing” what you love to do either with people you like to do it with or alone, if that’s what you like, also. Psychiatry, education, medicine, almost all institutions have sadly forgotten this. And, so many suffer because of this. Thank you.

  12. I think for many people, especially me, distress usually comes when you speak for something you believe in or you try to live your life according to your beliefs, and a family member or a “professional” refuses to acknowledge what you say or how your live your life. This can be most disconcerting when you really are actually trying to uphold the values you were taught at a very young age. It is like people want to deny you your free will and your freedom to live and be as your Creator meant to live and be. This is the most frustrating as you must live your life without someone to back you in life’s battles. Sometimes, even those who should know better call you “crazy” or other dismissive things. They have unfortunately traded in safety for liberty. And, yes, this type of attitude is ripe and well-placed for psychiatric abuses on so many levels. Thank you.

LEAVE A REPLY