Thanks for posting this — it’s so important. And for those of us in the USA, the real bombshell was this: Our patterns of suicide are DIFFERENT from those of other countries. In the USA, high unemployment is linked to more suicide — but not in the rest of the world! Finding out about those differences could show us a lot about the kind of change that is needed in the Land of the Free (Markets). It also gently suggests that the problem is not primarily biological, since as far as I know we are biologically not all that different from Aussies (g). I was so disappointed to find the actual paper behind a major-league paywall. Does anyone have a copy — and if so, could they at least tell us more about those figures? Thanks!
Thanks for posting this — it’s so important. And for those of us in the USA, the real bombshell was this: Our patterns of suicide are DIFFERENT from those of other countries. In the USA, high unemployment is linked to more suicide — but not in the rest of the world!
Finding out about those differences could show us a lot about the kind of change that is needed in the Land of the Free (Markets). It also gently suggests that the problem is not primarily biological, since as far as I know we are biologically not all that different from Aussies (g).
I was so disappointed to find the actual paper behind a major-league paywall. Does anyone have a copy — and if so, could they at least tell us more about those figures? Thanks!
One state we REALLY need to focus on is Florida. That’s obvious from the numbers in this great report. The key factor here is Florida’s Baker Act.
Thanks to this state law it is alarmingly easy to be hospitalized against your will in Florida. Absolutely anyone can call the police and report that you have said something about harming yourself or others, or done something along those lines. Teachers, bosses, neighbors, concerned friends, frenemies — and doctors, of course. You can then be held for 72 hours while the hospital staff decides if this is the case. If not, they release you; if so, they file a petition to extend your hold.
The Baker Act has played a big role, I am convinced, in attracting for-profit psych hospitals to Florida. Here’s the first of a series by the Tampa Bay Times on the subject:
This story is about adults–but they’ve also covered the explosive growth in “Baker Act holds” against young children, often for having a temper tantrum in school. The schools are not even required to inform the parents, let alone get their consent.
Have we got any activists in Florida who could follow up? The injustice done to Floridians is bad enough. But the state is also becoming a laboratory of sorts for the real-life consequences of “treating” people against their will. My guess is, it’s not making anyone safer, and is probably helping drive the suicide rate up, not down.
I agree, Sam. Many “positive thinking” interventions, especially the quickie, workbook-based or online varieties, do little more than tell us what we SHOULD think. I was struck by the woman who reported that being made to write gratitude lists only “pushed her deeper into shame and self-loathing.” She’s not alone. I have found that lots of cookbook cognitive-behavioral therapy tips functioned the same way — giving me sophisticated new ways to despise myself for my “irrational, self-defeating” thought patterns.
Right now, during this time of social lockdown and massive economic insecurity, do you know what I hear most often from the most anxious and unhappy people around me? “I *should* be grateful. I’ve got a place to live, I’m not sick, I’ve got plenty to eat, etc. etc.” It clearly does not make them feel better. It may help more to hear from others that they are frightened, angry, nervous too, and it’s OK to feel that way. Even realistic.
The #1 immediate Covid-19 risk factor for people diagnosed with “serious mental illness” is confinement in psych hospitals. The #2 immediate risk factor is antipsychotic medication. Period. This is true whether you think the diagnoses mean something, or regard them as a fraud.
Sometimes we assume that people locked up in institutions, even if oppressed in many ways, are at least “in quarantine” and therefore pretty safe in an epidemic. NOT TRUE. In fact, they are usually in much MORE danger due to being held in crowded quarters with others, dependent on staff who go from person to person all day. (Think of the young soldiers cooped up in army camps during the 1918 flu epidemic! They were far more likely to die than their civilian comrades.)
Today the virus is spreading with scary speed through jails and prisons. Family members and civil rights activists nationwide are demanding that all but the most high-risk detainees be released – now. It’s an urgent public-health issue. We should make the same demand.
People in psych hospitals may be in even more danger than prisoners. They tend to mingle more, and few have their own room or cell. Hospitals run by for-profit chains like Acadia and UHS account for an ever-growing share of “behavioral health” beds – and may be the riskiest of all. Patient-on-patient harassment, violence and even sexual assault are common. Under-trained and underpaid staff are too often part of the problem. “Social distancing” and strict cleanliness are pretty much impossible. Yet these places are notorious for packing in well-insured patients who don’t even remotely need to be there – and holding people against their will for as long as possible. These are potential virus hotspots. Non-profit and state-run hospitals are not much better.
As for anti-psychotic meds, I’ll refer people to the excellent RxISK post featured on MiA this week. These drugs depress respiration, and their extrapyramidal effects can even lead to breathing problems that mimic asthma. The higher the dose, the greater the risk. Use of mega-doses for short-term behavioral control needs to stop NOW – and urgent consideration given to either discontinuing the drugs or dialing down the doses whenever possible.
Reporters from ProPublica to BuzzFeed to the Dallas Morning News have focused on the scandals in our psych hospitals, including rampant over-drugging of troubled teens. Now is the time to make the connections and demand that Acadia, UHS and all the rest Let Our People Go.
It sounds like these researchers compared the homes of XX female-at-birth children raised as girls, with the homes of XY male-at-birth children raised as girls (and likewise for children raised as boys). They found the parenting styles and expectations similar. So they conclude that environment has little or no role in a child’s developing sense of gender identity – it must be biological.
If so, that makes no sense. It assumes that any “nonconforming” boy-child who prefers dress-ups to sports and Disney princesses to superheroes, is actually a girl – and any girl-child whose tastes run strongly in the opposite direction is actually a boy. The researchers also appear to assume that modern medical science either already knows how to identify a child’s “true” gender, or will be developing a test for this any day. And that the answers will come from brain scans and the like.
This attitude should be uncannily familiar to all of us at Mad in America – and disturbing. At the very least, it should make us stop and think. Is this a liberation movement – or an iatrogenic medical crisis in the making? (Or maybe 25% of one, 75% of the other?)
Haven’t we all been down this road ourselves? Based on a superficial account of our distress, or behavior, or both, we were told we were biologically different. Our brains were different. And only powerful medical treatments could rescue us, giving us back our “true selves” and a shot at a normal happy life.
Do not forget that these kids’ path to transgender adulthood will require powerful drugs and surgeries – starting with puberty-blocking injections at age ten or twelve, followed by lifetime medication with cross-sex hormones. All of which have major, worrisome side effects when used for other conditions.
I get it – we want to be accepting. Yes, all people should be free to define their own identity. And surely there are some people whose inner identity is so at odds with the body they were born in, that only medical transition will ever make them happy. On the other hand, gender-non-conforming behavior is quite common among children, and not a disease. A majority of such kids will grow up to identify with their biological sex. Some will do so as relatively “femme” gay men or relatively “butch” lesbian women. Shouldn’t they be free to be who they are, rather than being pushed from an early age to “transition”?
We also need to ask ourselves: Why is the rate of “gender dysphoria” among children and teens FORTY TIMES what it was less than ten years ago? If it had merely doubled, I’d say OK, greater awareness. But this is reminiscent of Childhood Bipolar Disorder, which also increased forty-fold within a few years. We all know what a mess that was.
Just as “stigma” is not the only reason to question drug treatments for emotional distress, so “transphobia” is not the only reason to question “gender-affirming” drug treatments for non-conforming children. This blog, by a woman whose daughter identified as male for two years, is worth a look: https://4thwavenow.wordpress.com/2017/10/25/born-in-the-right-body-introducing-4thwavenows-new-spokesperson-mom-of-a-teen-desister/
Dr. Wible has done some good things — but this letter is a BIG step backwards in her campaign against doctor suicides.
Here’s my “open letter” to Pamela Wible, run on David Healy’s blog last fall. I hope MiA will consider running it:
Yes. I was talking about the imbalances *created* by drugs–the ones that lead to withdrawal problems.
I agree, we know that tolerance and withdrawal DO happen, and I think the evidence for the basic general process you describe is pretty good. But I don’t think we fully understand what is going on. At best, we “kinda” know.
For instance: Why does re-starting the drug relieve withdrawal symptoms in some cases — and utterly, completely fail in others? Why does upping the dose work temporarily sometimes, as with opioids, but only make things worse in others? Why do some of these imbalances resolve with time, while others never do–and why does it vary so much even with the same drug in different individuals?
I know it sounds like I’m nit-picking, but I don’t think I am. Our situation would be a LOT less dangerous if we really did understand all the mechanisms here. Knowing what we DON’T understand helps make it clear why we should not tolerate doctors screwing around with processes that are still largely a mystery to us, like bored teenage boys out behind the garage trying to make stuff explode. Folks get hurt that way!
But yeah, in one way at least you are right: We DO know enough to be extremely suspicious of any strategy involving “maintenance” or “lifetime” medication. Chances are excellent it will blow up in your face.
Stuart, as I recall this is the story told in that 2008 Rolling Stone article “The Lost Years & Last Days of DFW” by David Lipsky (I think–can’t find it online anymore). He gave a picture of a guy who was doing pretty damn well, productive even, who decided to stop Nardil after having a scary hypertensive episode. Then promptly descended into hell. And the worst thing was, restarting Nardil did absolutely no good. (Neither did ECT.)
As I remember that article, though, Lipsky also said DFW was on Nardil for about 20 years. He described times during that period where he was doing real well — and times when he was truly, truly lost. This is one thing that can happen with long-term exposure to a drug like this: it seems to work wonders for a year or so, then stops working (or “poops out” as shrinks used to say in the early days, when they were more likely to speak frankly). You up the dose, and you still feel lousy. But then you try to quit, and the roof caves in.
What have we done to our nervous systems? God only knows (and she ain’t telling). I had a similar experience with another MAOI called Parnate. And I recall the folk wisdom among doctors in those days was to warn patients against stopping “because if you change your mind and try to start it again, it may not work.” I think many people have this experience with SSRI’s as well. It can make you feel utterly trapped–and doomed. We may never know why DFW died — “mental illness,” whatever that may be, is not the only cause of suicide. Drugs aren’t either. But given what that final year was like, it seemed no one close to him could tell themselves they were shocked.
You know, I wish I could believe that children were safer in the hands of “specialists” in child psychiatry, and less vulnerable to a really harmful mis-diagnosis. But I really think it’s exactly the opposite. When it comes to a dangerously flawed concept like Childhood Bipolar Disorder, lack of confidence is the beginning of wisdom!
It is precisely the “confidence” of the specialists that makes them dangerous. They feel comfortable prescribing drugs two or three at a time, drugs that aren’t approved for children, drugs with black-box warning, etc. etc. Things your GP wouldn’t dare do, because he or she is not enough of a specialist.
As for “mistakes” vs. “correct diagnoses” — it all depends on who’s doing the counting! It’s fairly easy for a child psychiatrist to label a GP’s decision (however sensible) as wrong. And hard as hell for a GP to label a child psychiatrist’s decision (however bizarre) as wrong. That’s just how the medical hierarchy works. The specialist is right BECAUSE he is a specialist, hallelujah, amen.
The same problem comes up in managing “chronic non-cancer pain” (from injuries, arthritis, etc.) Too many people think the whole problem of reckless over-prescribing of opioid pain pills comes from letting mere GPs handle it — and the solution is to turn all such decisions over to Board-Certified Pain Management Specialists. In reality, most of the time, it’s when you meet the Board Certified Specialist that your troubles REALLY begin … because those bastards are Confident. Oh boy, are they confident!
AMEN. AA may not be perfect, but its real power has a lot less to do with the slogans in the Big Book, and more to do with the power of fellow sufferers helping each other. That is why, every ten years or so, the professional treatment industry tries to declare it obsolete.
The worst of it is, these guideline authors do not even admit that antidepressants cause mania! At any rate, not unless you have given them to “the wrong patient” — one of those “hidden bipolars” who has been mistaken for a person with simple depression. In that case, they say, you haven’t actually caused mania so much as unmasked it! It’s absurd, but it keeps the drugs flowing. The trouble is, this becomes a self-fulfilling prophecy. Unless the person is completely bedridden and lethargic, any sign of anxiety or agitation can be taken out of context as proof of this mysterious “mixed” bipolar state. Especially in 20-20 hindsight, after the antidepressant has made them worse. The moral of the story: Antidepressants don’t cause mania or agitation in general. They are simply the wrong drugs for people who “really” have bipolar disorder in some form, and should have been given an antipsychotic (preferably a pricey new one).
Stephen Stahl, the lead researcher, is kind of a poster boy for financial conflicts: Over $800K per year in promotional payments in 2015 and 2016; over $1.5 million in 2014!
I’d like to thank Melody as well for alerting us to this issue and for fighting to turn her loss into change! Also wanted to know if she or Frank (or any other friendly Floridian) could tell us a bit more about the Baker Act. This is Florida’s temporary-involuntary-commitment law, which was used to hospitalize Melody’s father. It seems to be WAY worse than most other state laws which are already bad enough. From what I have heard, almost anyone can call the police to report that you’re “at risk” of harming yourself or others, and have you transported to a hospital for “assessment”.
Have I got that right? How was this law “sold” to the public as a good thing, and is there any public rebellion against it now?
Thanks so much for this Sera! I think you’re right — however many good people and even “good chapters” there may be at the grassroots, the national organization is so thoroughly captured by the pharmaceutical industry that it’s hard to even wrap your mind around. As a matter of fact, the industry relies on NAMI to speak for them, making claims for their products that they can’t legally make, and saying things that would be spotted as self-serving if the industry said them.
Here’s the link you may have been searching for BTW, to get NAMI’s major corporate contributors:
Their biggest contributor of late — $575K to be the national Premier Sponsor of NAMI’s fundraising walks — is Alkermes. I know. You never heard of it. Their business? Depot injections — which in 90% of cases are used for involuntary treatment. Alkermes makes Aristada, a 90-day depot Abilify injection, and Vivitrol, a 30-day naltrexone depot injection for opioid addicts which is being heavily marketed to prisons. They also own the patents on depot-injection technology used by several other companies. Prior to that the National NAMI Sugar Daddy Extraordinaire was Otsuka, makers of Abilify and Abilify Maintena (depot injection).
The scandal-plagued for-profit hospital chain UHS (Universal Health Services) has given National NAMI $85K a year for the past few years. Their local hospitals have also formed close relationships with NAMI in numerous cities. In short, NAMI’s drug-money problem has not eased up at all in the past few years — if anything it has deepened. And it needs to be called out. They are an 800-lb gorilla in the media and PR field, with an awe-inspiring power to promote certain agendas and shut down others.
I appreciate the point you are trying to make, Dr. Breggin, and I heartily agree that studies of antidepressant drugs in adults have been fatally distorted by drug-company control. But the same applies to the pediatric studies!
We would be terribly naive to think those studies were “monitored and controlled” by FDA, or that they were “somewhat good apples” compared to those awful adult studies. The most famous example is the infamous Study 329, which proclaimed Paxil to be safe and effective for adolescent depression. The multiple layers of deception imposed by drug company control, with direct complicity of leading academic experts, was not fully exposed until 2015 — and the article has still not been retracted.
Mad in America has a treasure-trove of articles on Study 329 and related studies, which are an instruction manual in all the tricks of the trade used by GSK to defend a profitable product:
The pediatric warning was not achieved by FDA vigilance and quality control. It was achieved by a coalition of brave parents and a few good experts who would not shut up. We had better learn that lesson and hang on tightly to it. The American psychiatric establishment is on a campaign to repeal that warning, just as was done with the suicide warning on Chantix.
Thanks so much for this article Bob! One small detail I can’t help but add:
Apparently the “tardive dyskinesia market” is heating up, according to Pharma sources. A company called Neurocrine Biosciences has brought out Ingrezza (valbenazine), a drug to treat a disease known to be a direct side effect of antipsychotic drugs. A side effect we were told was a remnant of the bad old days, since the new “atypical” antipsychotics allegedly did not cause it.
Neurocrine will be charging $63K a year for Ingrezza. The competition, a Teva drug called Austedo, currently used only for Huntington’s disease but aiming for “TD” approval, costs $60K for now.
You can lie to the patients .. the doctors in the field .. the general public. But you can’t lie to the investors, I guess. That would be a sin.
Pain is the journal of the American Pain Society – a medical guild more deeply compromised by its bloc with Big Pharma than any out there, including possibly the American Psychiatric Association. They embody everything Mad in America is trying to fight. This article is part of a multi-million dollar propaganda effort mounted by Purdue Pharma (makers of OxyContin) and its allies.
I hope Mad in America does not fall for it. If we can’t get this right, what CAN we get right?
The article contains crumbs of fact – I have no doubt that poor people, and those in strenuous blue-collar jobs in particular, are being subjected to chronic-pain “treatment” based on opioids like OxyContin, Norco, Opana, Zohydro, etc. more than middle-class and rich folks. But that’s not good news. Poor folks are getting this treatment plan – addictive pills rather than physical therapy, time off work, counseling and other humane measures – because rich folks would not stand for it.
Long-term prescription opioids are more than “considered problematic in the long run,” as the folks at Pain so delicately put it. They killed about 14,000 Americans in 2015 alone, and they are killing more as we speak. And the highest death rates are among people in their forties and fifties. In other words: not “recreational” users, but chronic pain patients who may even be taking their pills just as directed.
They have also kicked off a renaissance of heroin use – based largely on younger people who began either by “abusing” prescription pain pills, or getting addicted to them after short-term medical use for injuries, tooth extractions etc. These are the people “switching from pain pills to heroin” – NOT chronic pain patients who have been cut off their meds by increased restrictions, as Purdue Pharma would have you believe.
The line being pushed by the APS and Purdue Pharma is that “recreational” use or “abuse” is the only problem, and any attempt to restrict opioids will only “punish” chronic pain patients. They also try to label anyone who is concerned about those 14,000 deaths – and the wider misery caused by opioid addiction among those who live on – as a “drug war” type who has no compassion for people in pain. The truth is that long-term opioid therapy is not only dangerous – it’s a lousy solution to long-term pain. Really lousy. I see it every day among injured folks in the workers’ comp system.
There are many, many organizations and activists on the ground right there in Massachusetts trying to fight this epidemic unleashed by the medical system. They can help you understand the problem, and why you should be wary of material from the American Pain Society. I hope MiA as a whole will take a deep breath and step back to study this topic before we get ourselves used by the very folks we are trying to fight.
Hey CAT, if you’d like a chance to tell your story to a wider audience, BuzzFeed’s main reporter is taking first-person testimony from UHS staff, ex-staff, ex-patients etc. You can reach her at [email protected]
Sandra, you got it boiled down to one word. Mickey was a mensch.
As valuable as his analysis was of the fraud running rampant through psychiatry, and his careful statistical lock-picking to let the truth stick its nose out … what I will really miss is his Tales from the Free Clinic. Just a sample here … one we reprinted on the RxISK blog last year with Mickey’s gracious permission:
One more BIG thing we need to keep an eye on here: the explosive growth of private, for-profit inpatient psych hospitals, with a business model based on maximizing involuntary hospitalization even for those who can’t possibly be said to need it.
Rosalind Adams of BuzzFeed has summarized the issues conscientiously and brilliantly here:
The chain she writes about, Universal Health Services, now controls about 20% of US hospital beds. But it’s by no means alone. Acadia Health is getting almost as large, and many smaller chains are forming to chase the outlandish profit margins (over 25% in most years) reaped by UHS.
University-based experts and researchers are usually shockingly ignorant about these places, which deliver a lot more psychiatric “care” than do their own institutions. That’s why they tend to believe the Treatment Advocacy Center when they moan about how “difficult” it is to obtain involuntary commitment. In fact, it is disturbingly easy in most states, and getting easier.
And while most university experts think a “private psych hospital” is a relatively scarce institution open only to the wealthy, outfits like UHS increasingly make their best money off poor folks: Medicaid, Medicare, and the foster-care system. The result is what a University of Illinois team, sent in to evaluate UHS’s Hartgrove Hospital, called “hospital-based trauma” — a whole new, treatment-generated burden for troubled kids to carry.
Regional reporters in Florida, Massachusetts and other states have tried to take the wraps off this problem, as exemplified by the UHS chain. BuzzFeed is the first to attempt it on a national scale. It should be a massive wake-up call. I hope it is.
That’s interesting Sandra! My recent experience as a patient has been just the opposite. Psychiatrists seem controlled by the old axiom that when you are a hammer specialist, everything looks like a nail. Any worsening, or failure to improve, on a psychiatric drug is met with an increasingly complex and potentially disabling “cocktail.” To cite just one example: a big reason for the increasing use of amphetamines (Adderall etc) in adults is not “Adult ADHD” at all. Rather, they are being prescribed to overcome the effects of other meds that have left patients increasingly sedated, obese, apathetic and generally miserable. (Sometimes, I’ll bet, this is coded as “comorbid ADHD” simply so the insurance company will pay.) They then have to add Xanax for the anxiety and/or Ambien for the insomnia triggered by the amphetamines. This chasing of one drug with another is going on in pain clinics with the opioids as well as in psychiatry with the antipsychotics and anticonvulsants.
The only person I could get to acknowledge this problem, in my own case, was my GP. And part of her willingness to question came from what she saw among members of her own family who were under psychiatric “care” including two young adults who were clearly dependent on their prescribed Adderall. Lately I have met a few more GPs who confess to being increasingly aghast at what they see in their patients who have been referred to psychiatry.
I think your clinic may be a real standout, and possibly a vanishing breed (I hope not!) But more and more the “care model” for the so-called seriously mentally ill involves a psychiatrist who sees them once or even not at all — instead the doctor supervises a psych nurse practitioner who sees the patient for fifteen minutes every two months and prescribes according to an algorithm she’s been given by the folks who never, ever see the patient. Hopefully there is someone who talks to the patient, and even listens — but that person is now two or three steps removed from the one making the prescribing decisions.
This is the model I uncovered in the very best, most “progressive”agency in Chicago while trying to find help for a workers comp client who had been judged to have “paranoid schizophrenia.” Lord only knows what’s going on in the second- and third-rate institutions.
This is a really important question, but there’s a lot left out. Were the Black veterans getting different sorts of diagnoses, and different sorts of treatment? Including medication? I’d be willing to bet they were.
A recent study found that one in six American adults had taken a psychotropic drug over the past twelve months. As usual, the study found that blacks were considerably less likely to be on a psych drug — but of those who were, it was something like three times more likely to be an antipsychotic!
There is good reason to think that black people are still more likely to be judged “dangerous” in the psychiatric system–and also more likely to be seen as “delusional” or “irrational.” They’re definitely more likely to be on monthly antipsychotic injections, and more likely to be treated against their will.
And while black people, despite all the hell they get put through in this society, are much less likely to commit suicide, there is one group for which that relationship has been reversed in recent years. That is, children under 15. The epidemic of drugging of poor children, and especially foster kids, has come down particularly hard on black children, I fear.
The system, and the nonprofit groups that “advocate” for the mentally ill, are always moaning about the reluctance of black people to seek professional help for mental health distress. I think it’s probably very rational–and at least sometimes a real survival advantage. We need to go straight to the source, and ask people about their experiences.
Thanks for this Zenobia!
Great article! Glad to see something in the broader progressive or “radical” press that recognizes what a bad deal the Murphy bill is. Too many people hear “more money for mental health” and don’t look deeper.
One thing folks should know about that “IMD Exclusion” and why it’s important to keep it: It does not apply only to acute-care psychiatric hospitals. IMD stands for “institutes for mental disease.” Here in Illinois that includes many large nursing homes that house people diagnosed with mental illnesses, either exclusively or together with physically disabled folks. These private for-profit nursing homes have become the default option for housing people whose problems are serious enough for them to wind up on Social Security disability. They deprive thousands of people of their freedom and dignity — and are crap places to live in as well. Short-staffed, with lousy food and facilities, clustered in the poorest neighborhoods with the highest crime rates. A landmark lawsuit called the Williams case has allowed hundreds of people to escape these places for apartments of their own where they can come & go as they please.
Mental-health “advocacy” groups frame the IMD Exclusion as just a bureaucratic policy that keeps patients from getting adequate physical healthcare. It’s not. It’s a vital protection against ever-increasing institutionalization, often for private profit. Getting rid of the IMD Exclusion is one of the biggest steps backward in the Murphy bill.
I liked this article, and the related one reflecting on activist Marshawn McCarrell’s suicide. I’d hope we in the “Mad in America” community can have more discussions with Darnell Moore and his comrades. I too have some quibbles with the language, Oldhead, but I’d hope our discussion could go way beyond that.
What they’re saying is exactly what so many folks here are saying: that there are real reasons to be in mental or emotional distress in this society. And that the demeaning, dismissive, repressive and sometimes terrifying pressures of being black in 21st Century America are big reasons for distress. They certainly reject the idea that they have a brain disease or that the answer is more psychotropic medication.
And face it, King’s distress was real. That famous anonymous letter, sent to him by J. Edgar Hoover’s FBI, trying to bait him into committing suicide was sent for a reason. He had the weight of the world on his shoulders from his mid-twenties; he correctly perceived that he was very likely to be killed by the time he was forty, and it just might be all in vain. Who wouldn’t despair?
Best of all, Moore acknowledges some of the strengths of the black community (which lead to their much lower suicide rate despite their higher exposure to various traumas) and avoids the poisonous cliche that blacks don’t get effective help because the “stigma” is so much worse in their community. There’s no urge to join the more “enlightened” mainstream-white culture in “recognizing” the biological basis of their problems. Last but not least he recognizes that the “services” offered black people are often even more toxic and coercive than what the rest of us get.
Hooray! Let’s talk.
My take: It might be interesting to explore Emily’s childhood … but only if Emily thinks it’s interesting. Let’s stop and listen to her take on why her life took the path it did.
Emily, I was really captivated by your essay, and I think you have come by some hard-earned wisdom. Although about twice your age, I am just getting there myself. What makes us who we are, for better or for worse? Are there “constitutional” factors that are hard-wired somehow, or is it childhood experience? We don’t know. I had some childhood traumas of my own — but I shared them all with my sister, who nonetheless grew up utterly unlike me. And long before the traumas came along, I knew in my bones: Many things that came naturally to my sister would always be a struggle for me.
Either way, I’ve decided to rebel against the goal of Total Remission, currently so beloved by psychiatry. I don’t know if Total Remission exists, but I do know the search for it leads to dangerous excesses. Especially drug excesses — but “psychotherapeutic” excesses can be demoralizing and debilitating as well. At a certain point I gotta say: Screw Remission. Like Popeye, “I yam what I yam,” and I just need to find a way to be the best me I can be.
Abe Lincoln never mastered the Power of Positive Thinking either — he endured spells of deep melancholy all the days of his life. Could any modern mental-health professional have helped him? Maybe yes, maybe no. I’m grateful, at any rate, that they were not around to convince us all that he was too sick to be President.
Richard, there is no way in hell that anyone here wants to outlaw opioids or shut down all the pain management clinics. And no one here is “stigmatizing” people in serious pain who have been put on these drugs and given no good alternative. As someone who deals with the practical aspects of this mess every day (including hours on the phone fighting for our clients to GET their opioids reliably!) I am well aware that patients who are on these drugs face increased barriers and increased, demeaning scrutiny. They are being blamed for something that is not their fault. The question is: WHY?
First of all, because Purdue Pharma & friends (and the professional guilds and nonprofits that live to serve them) have chosen a deliberate strategy of BLAME THE PATIENT. They are the ones who have designed and sold these bogus “Risk Evaluation and Mitigation Strategies” that have made so many patients feel criminalized. They want to convince people that there is nothing wrong with the drugs, as long as we learn how to weed out the bad patients. They are NOT your friends, or the friends of the folks you’re trying to help.
They are now conducting a very sophisticated, well-funded smear campaign against those who stand up to them, trying to label us as Drug War zealots who don’t understand and don’t care about people in real pain. It is very clever, and deeply dishonest. The object of the game is to get us fighting each other while they laugh all the way to the bank.
Please. Don’t fall for it. THEY are the ones who are pushing this stupid, conterproductive REMS Crackdown. (Meanwhile, many of the people who are standing up to Pharma and the AAPM have also been standing up to the “drug war” and mass incarceration for thirty years or more.)
And if I have to say it 1,000 times, I will: There may be some people for whom nothing else works. Okay. I am all for them getting whatever help they need. But I am seeing too many people placed on these drugs inappropriately, chewed up and spit out by this system. And even as the drug companies shame and blame the patient who has already been harmed by this model of “care,” they are busy signing up five more new ones. That is their business model. They don’t care if the drugs do great good, or great harm, or nothing at all. The money is just as green either way.
People should not die in their forties and fifties of a bad back, or a torn rotator cuff, like my clients. Or severe osteoarthritis, like poor Prince. He was certainly not a recreational drug user; as a Jehovah Witness, he had religious scruples against getting high that would make most of us look like mindless thrill-seekers. And he was certainly in serious, chronic pain with two bad hips. And certainly no one took his meds away; he had all the best doctors and all the opioids he wanted. And he turned blue and died.
Prince wanted out of that trap, very badly; apparently he was planning to fly to California to find a doctor who could help him escape. But it was a little too late. A very good man, a responsible man, working hard and heading up an impressive business empire. And despite having all those millions, he was caught in the same trap as many of my workers’ comp clients.
I am simply sick and tired of seeing that happen, and I want people to have alternatives. That’s all. We are not enemies. But I’m afraid groups like the National Pain Foundation are trying hard to make us enemies. This is a trap. Let’s not fall in.
I ain’t no expert … but workers’ comp clients, friends and relatives have shared a variety of things that have worked …
In some cases the trick is to *reduce* the need for opioids rather than cut them out altogether. If you can’t totally stop, cutting down can vastly improve your quality of life by reducing drowsiness, testosterone suppression, dizziness, weight gain, depression, osteoporosis, and all the other joys of long-term Oxy or Percocet.
What’s really needed is long-term, hands-on, individualized care that acts as if people’s lives matter. That is much harder to make a profit on than Oxycontin or Opana ER (or epidural steroid injections). Anyway, here goes:
1. Physical therapy: Most patients get very limited physical therapy which is focused on an eight-week course of exercise and physical treatments like hot packs and ultrasound. A more gentle, gradual and individually-focused exercise program can sometimes work wonders – especially if it incorporates water-based exercise.
2. TENS units and other “nerve-stimulation” technologies. The TENS is a portable unit that uses a mild electrical signal to disrupt the transmission of pain stimuli to the brain. It works well for some. There are also implantable “spinal stimulators” for more intractable problems.
3. Biofeedback, guided relaxation and some mindfulness therapies help some people cope with pain that can’t be eliminated.
4. Acupuncture helps some folks tremendously – sometimes the relief is just temporary but you can say the same for those epidural steroid injections which are a lot more invasive. Traction is one stodgy old “Western” treatment that helped me hugely with a painful sacro-iliac injury years ago.
5. Other medicines: Part of Pharma’s campaign to sell opioids has been a HUGE overestimation of the dangers of ibuprofen, naproxen and other “NSAID” painkillers. They actually persuaded many doctors that opiates were “safer” than Motrin and Aleve! It’s true they can cause gastric or cardiac problems for some vulnerable individuals – but most non-elderly folks can tolerate them well. A friend with chronic back pain really had his life transformed by a prescription for Voltaren (diclofenac). Lidocaine patches have also helped many folks sharply reduce or even stop their opioid intake. Anti-convulsants work for some people with central nervous system disorders although caution is needed with them as well (Neurontin is a godsend for some and a nightmare for others …)
6. Cannabis and cannabis derivatives: These have worked MUCH better than opioids for many chronic pain sufferers though not all. They’re especially good for any pain that involves muscle spasms. Many Iraq war veterans who have been horribly damaged by the VA’s opioid-benzos-and-Seroquel program have found pot to be a godsend. (If you are suffering from both physical and emotional injuries, opiates can be particularly dangerous … )
Apologies for repeating myself … but it is the drug industry that is “punishing pain patients” in order to take the heat off themselves and their drugs. They push the myth that we are dealing with two separate & competing problems: “Drug abusers” who use the pills to get high and then get addicted or overdose, and “legitimate pain patients” who supposedly can never get addicted and will only be helped, never harmed. They have a multi-million dollar PR campaign to push this point of view, and dozens of respectable well-heeled medical nonprofits at their service. (BTW they have also mobilized all this money and talent to “warn of the dangers of cannabis” and keep it from being a legal option.)
But the bulk of the overdose deaths are among people like my two dead workers-comp clients: middle-aged men and women who got prescriptions from doctors for real chronic pain. Many of them are veterans “treated” with opioid-benzo combinations in our VA hospitals.
As for the antidepressant comparison, here’s my take: I spent years feeling miserable and thinking SSRI’s were my only shot at normalcy. After all, no matter how bad I felt while taking them it was NOTHING to the way I felt each time I tried to quit! The medical profession and NAMI assured me this proved my brain needed the drugs, and I shouldn’t listen to any of those horrible people who criticized the life-saving antidepressants.
Many people on long-term opioids are caught in the same cruel cycle. Their pain is real, and it is significantly WORSE than it was before they started taking opioids for their injury! And any new injury to a different part of the body will be excruciating from the git-go because of the drug-induced hypersensitivity. It happens to a LOT of people, and it makes a LOT of profits for Purdue, Endo, Cephalon et al.
I really wish I could believe that the opioid painkiller crisis was a made-up thing. Bur as a paralegal in workers comp, I deal with it every day. In the past few years I have lost two clients to drug overdoses, and had a third come close to dying from severe bowel impaction. Another developed such profound osteoporosis that his tibia snapped like a twig one morning when he got out of bed. All of them began with significant pain from significant musculo-skeletal injuries. And all came to grief through following their doctor’s orders.
I can think of a couple dozen more clients whom I’ve accompanied on the journey from being in moderate pain, and only able to do light-duty work, to being in severe pain, and unable to work at all. Thanks to long-term, ever-escalating doses of OxyContin, Norco, Opana, Percocet, Duragesic Patch, Zohydro and all the rest … I wish I could believe that hyperalgesia, or intensified pain response as a consequence of chronic opioid therapy, was rare. However, I spend a portion of each workweek on the phone with people in the throes of it. I also wish I could believe that the profit had gone out of opioid medications, so that Pharma would start badmouthing them the better to sell other drugs. But too many “novel” formulations of the same old stuff keep getting approved. Check out the price of extended-release and allegedly “abuse-deterrent’ Opana, to name just one. Not to mention Tarqiniq, Hysingla, Exalgo, Zohydro, or all the various fentanyl products approved for cancer patients and then marketed 80% to non-cancer patients…
You know who is REALLY responsible for blaming and shaming these patients? The drug companies. Purdue, Endo, Cephalon and the rest. They have perpetrated the Big Lie that these drugs are terribly addictive for “drug abusers”, but absolutely safe and non-addictive for “legitimate pain patients.” They are now pushing a form of “prescriber education” that teaches docs there are no bad drugs, just bad patients. Their phony “Risk Evaluation and Mitigation Strategies” are aimed at teaching doctors to identify the “drug seeker” or the “high risk patient.” (Unfortunately I have to include the National Pain Report, the National Pain Foundation and many other nonprofit entities in this project:) In reality, we may have differing degrees of vulnerability to opiate addiction — but there really are no low-risk patients. Use the stuff long enough and you will become dependent. We’ve known this at least since the Civil War.
This is not an easy issue, and there may be a small number of patients with trigeminal neuralgia, sickle-cell or some other conditions for whom long-term opioids are the best option available. They are certainly indispensible for major surgery and for terminal cancer. But no one can honestly deny they’ve also been massively overprescribed to people with back injuries, shoulder surgeries, migraines, fibromyalgia and a host of other conditions for which better strategies exist. It’s highly profitable, it’s a convenient substitute for quality medical care, and it’s tragic.
I often recommend this video to help people sort out the issue: a followup on 7 Purdue “success stories” featured in promotional materials for OxyContin. Two are still on the drug and think it’s a decent solution. Two are dead of drug-related causes. One managed to quit at great personal price, and would never go back. Two others could not be located:
Thanks for this call to arms, David! I just had a couple of ideas about how to approach Bernie Sanders:
1. There are a wealth of consumer/survivor/peer-led groups and activists in Vermont, Bernie’s home state, which hosted at least two showings of the Healing Voices movie last week. (Not to mention MiA regular Sandy Steingard.) They may have an idea of how to get Bernie’s ear.
2. Another avenue might be one of the ongoing Sanders support groups in Oregon. From my limited experience in Illinois, these groups are more in touch with social struggles on the ground than campaign staffers. I found the latter to be a somewhat insular tribe who jump from candidate to candidate and don’t have much understanding of anything beyond electioneering. Sanders himself has always been about more than that. Probably why he has remained an Independent, not a Democrat, throughout his legislative career.
3. Sen. Sanders has done a lot of yelling at Big Pharma in the last year. Most of it has been around price-gouging, the easiest issue for an American to understand … But he also was one of the few to oppose Obama’s nominee for FDA head, Robert Califf, because of his close ties to the pharmaceutical industry. (As in, joined at the hip.)
Just a few stray ideas … hope they’re helpful ?
Dear Goodie–A few things I think are worth doing when really tormented by suicidal thinking:
1) Try to identify one person in your life you can at least talk to. They don’t have to have answers, or even be able to spend hours discussing it. But ideally they should be able to hang out with you for awhile when you are feeling shaky and/or let you stay on the couch for one night. It can be hard to identify such a person and get up the nerve to ask them for support. A doctor or counselor could help you work it out.
2) I heard one good tip from a woman who had called a suicide hotline: They told her to put together a “first aid kit” of things that reminded her of reasons for living. It could be pictures of people you love, things you’ve accomplished, dreams for the future … This woman kept hers on her smartphone and said it helped her talk herself down several times.
3) The Scarlett O’Hara strategy: “I’ll think about it tomorrow.” In a way I think that’s what you were doing by thinking of an “exit strategy” that would take weeks of work to complete–going to a euthanasia clinic in Europe. I did a similar thing in a period of crisis by deciding I had to insure that I could donate my organs–which ruled out the simplest option of OD’ing on pills at home. It was only years later I realized that had been my way of resisting my own suicidal thoughts.
4) If you can’t yet find a supportive friend, at least look for ways to be in public or not alone. Going to the movies ain’t the best but it might work. So could going out for a cheap dinner, running an errand or just browsing in a bookstore.
One reason healthcare workers call 911: Even if they don’t truly believe you will get effective help, they’re under pressure to protect themselves. If someone contacts them talking suicide and they DON’T call 911, they might be sued or disciplined if the person does take their life. It’s a damn shame that pressure exists, because the Emergency Room experience can end up being more traumatizing than anything else.
Would welcome any comments from practicing “mental health workers” of any stripe!
I was struck by the description of the “placebo group” in that Northwick Park study: More likely to have a “relapse.” But also more likely to get a job. Who is better off in the long run: the person who avoids troubling “relapses” but never finds their place in the world? Or the one who gets to have a life, even if troubled by occasional “spells”? Of course, getting a job does not equal getting a life, and many people with no paying job have very meaningful lives. But as a rough indicator of who is “getting a life”, working vs. not working seems pretty good to me. And if so, the same drugs that may keep you from “relapses” may also keep you from getting a life. I know which group I would rather be in.
Still, there’s so little support for people trying to do without the drugs, and so much alarmism spread by professionals, that even really sharp, independent patients can get scared off. Recently I had a chat with a “peer counselor” who was on antipsychotics. As we talked, the litany of side effects he was dealing with piled up, from involuntary tics, to major weight gain, to fatigue and “fogginess”, to flashes of intense irritability. Yet he was afraid even to lower the dose, let alone taper off. Why? He’d tried once, and gotten a few stray “ideas of reference.” And that’s a “psychotic symptom,” so it seemed important to squelch it at all costs! Whereas the other problems were mere “side effects” that his doctors seemed to feel he could simply live with.
It seemed like such a distorted set of priorities. I know a few people who deal with “ideas of reference” fairly regularly, because they are both a bit eccentric and also deeply religious. So they get the feeling “God is trying to tell me something.” Yet they live fairly happy productive lives — and they’re not flirting with permanent tardive dyskinesia either. As one who has not been there, it’s hard for me to say — but it might be easier to learn to deal with occasional mystical or paranoid “flashes” than to cope with all the physical and mental burdens of the drug.
I’m so glad for those few professionals with the guts and humanity to help people deal with those kind of choices! Thanks, Sandy.
Amen to that! One nice thing about the online world, it enables you to farm out tasks to volunteers who live hundreds or even thousands of miles away. Given all the folks who write for this site for free, or “donate” their blogs, I’m thinking we may have major resources in that area.
I think asking readers to support MiA is a no-brainer. Whether an annual donation of $25 or $50, a monthly pledge or a bigger donation from those who can. We don’t have to make people do it, as in requiring some sort of “subscription”, but lots and lots will do so voluntarily. This forum is a real gift and a wonderful resource that needs to grow & flourish.
I agree with Kermit on the ads — even if they come from a category of vendors we perceive to be “on our side,” such as treatment centers offering treatment for psych drug recall. Especially in a private-profit system, we will find plenty of people selling a bogus or harmful product. And we won’t agree about which ones they are, either (g). Best to avoid all such conflicts by being ad-free. We’ve had some similar discussions at RxISK.org, coming to grips with the fact that we are an underdog “movement” and can’t rely on someone having a commercial interest in supporting us or our ideas.
THANK YOU ALL for bringing MiA into being, and keeping it alive!
Wow — thanks. 48 million Xanax, plus 28 million Ativan and 14 million Valium. And I bet they left Klonopin off the list because it often gets classified as a seizure drug. Holy crap.
Of all the “psych drugs”, benzodiazepines are by far and away the most dangerous in terms of overdoses. And are probably the most commonly given out by family doctors, pain clinics, etc. It’s ironic. Twenty years ago the SSRI’s were being pushed as “safe” because it was so hard to overdose on them–unlike those awful benzos. But now US doctors have completely forgotten about “benzo addiction” and give these pills out like candy, including to people who are also taking opiates. It’s deadly.
I can guess, John … First they’ll talk about the “absolute risk” being small. That WOULD be a valid point if antidepressants were highly effective meds for a terrible disease that had no other treatments. (That’s wrong on all three points of course.)
So their main weapon will be bogus claims that depression itself is a massive biological event that can harm the fetus all by itself. Which is BS, but which they can still get paid experts to claim. This “balanced” article from the Boston Globe/STAT is a good example. It’s more “open-minded” than many articles. But while it puts the studies of medication harms under the microscope, it gives a free pass to a “study” that supposedly shows permanent brain damage to the brains of children whose mothers were depressed while pregnant. Even though this “study” is based on 1) reviews of rat studies and 2) rank speculation. Arrgh.
Mark, thanks for the heads-up! I took a look at the tables in the article. The figures are from the Centers on Disease Control. What the author has found is this: 15,778 fatal overdoses INVOLVED a psychiatric medication. What really stands out? Most drug overdoses in the U.S. today — especially prescription drug overdoses — involve more than one drug. 90 – 95% of fatal OD’s involving a psychiatric drug were “multi-drug” cases.
The big, fat, 800-Pound Gorilla in the room is prescription opioids like OxyContin, Norco, Opana, Percocet etc. Multi-drug OD’s involving these prescription drugs led to 3.72 deaths per 100,000 people; those involving heroin, 0.73. Since heroin is a drug of the same class, often used these days by people who can’t get enough pills, you can call that a combined 4.45 per 100,000.
The second biggest Gorilla is Benzodiazepines (Xanax, Valium, Klonopin, Ativan etc.). They were involved in OD’s that killed 4.55 people per 100,000. The biggest single multi-drug disaster – death from a combo of Benzos and Opioids – killed 1.72 people per 100,000. Benzos plus cocaine accounted for 0.24 deaths per 100,000. Multi-drug OD’s that did NOT involve any of the above accounted for just 0.69 deaths per 100,000.
What do we make of this? First, one of the riskiest categories to be in is a person seeking care for both physical and emotional pain – or seeking care for physical pain, but judged by the doctor to have “psych issues.” The horrible epidemic of “pain-pill” addiction, overdose and death gripping many parts of this country is being made much worse by doctors dishing out psych meds on top of drugs for physical pain. Not to mention psychiatrists who dish out psych meds without even keeping track of the patient’s physical problems and the drugs s/he is taking for them.
Don’t know much — but I know it is not ECT. It involves much, much smaller amounts of electricity, not enough to induce a seizure, and you can do it while fully conscious. There’s even commercial devices you can buy, with electrodes you fasten to your scalp, to “self-treat” at home.
The question is, does it work? It’s been touted for helping with depression and anxiety; also to improve concentration and other cognitive talents. Obviously it would be a big moneymaker if it could be shown to work — but so far the FDA has not approved it. The same goes for Transcranial Magnetic Stimulation (same thing with magnetic stimulation), which various companies have poured money into for years, getting leading psychiatrists to do study after study. I believe that’s still an experimental treatment; I know insurance still won’t pay for it.
Since they don’t require anesthesia, it’s been easier to do studies on these gizmos using “placebo” or “sham” treatments — say, a totally inactive gadget that sits on your head, vibrating and making interesting noises. These studies have not shown big gains from TMS or TDCS, I picked up this article from the BBC that suggests tCDS may have a little more effect than TMS — but also might not be all that safe. Take a look: http://www.bbc.com/news/health-27343047
Lest people think that “all is lost,” and ECT now has a Good Housekeeping Seal of Approval from the FDA: That’s not exactly the case. This decision is limited to “ECT devices” — NOT “the routine clinical use” of ECT. There’s a difference.
A screwy little item in the law called Regulation 510(k) allows the FDA to approve devices without testing if they are “substantially similar” to other devices already on the market. FDA now wants to approve any ECT device that’s not too different from older ones. That’s bad enough. But the bigger questions: Is ECT use worth the risks? What conditions, if any, does it really help, and for how long? What limits or precautions should there be? Those are all still up for grabs.
(I’m not for banning ECT but I’m not real fond of it either, to put it mildly. My biggest worries: Sloppy and biased studies, mainly in outlets like the “Journal of ECT.” People getting ECT against their will! “Maintenance” ECT, where people undergo dozens or even hundreds of seizures over time. ECT for “disorderly conduct” due to dementia, psychosis, autism or any other reason.)
Here’s an analogy: Companies have used 510(k) to get new artificial hips approved as “similar” to older ones. That should stop. It’s way too lax. But does FDA “approval” of any artificial hip tell you as a patient that you should get one? Hell no! It’s still a major operation with various risks and lots of pain. Artificial hips are never 100% as good as a healthy original, and sometimes they fail outright. To get an artificial hip is still a terrible idea if less drastic treatments might help. If a doctor offers you one, always get a second opinion.
I’m not saying ECT has as good a track record as artificial hips. Not by a long shot! But it’s good to know where we stand. So, let’s not tell anyone that the FDA has “endorsed ECT.” That might give it a selling point it doesn’t deserve.
Well put, Katie. I have had ECT myself — twelve sessions as recommended, back in the 1980’s, for severe “treatment resistant” depression. It did me no good at all. On the other hand, it did me no long-term damage that I can tell. It did cause short-term cognitive impairment, particularly memory loss, and to this day my memory of October 1985 is pretty spotty. But then, I was drinking pretty heavily too.
I have met people who insist that ECT “saved their life”, and others who insist ECT ruined their life, or at least did permanent damage. Neither one happened to me. But if I’ve learned one thing hanging out in places like Mad in America, I’ve learned not to discount others’ experiences because they don’t duplicate mine.
As for David Healy, well, I don’t really agree with his views on ECT, and the recent discussion on his blog did not convince me. However, I was impressed with his willingness to have that discussion, at length, with people whose views came mainly from trying to make sense of their own experience. He’s also heard me out on the question, understands I don’t agree, and has never hesitated to work with me anyway. Just like a lot of other patients/survivors/whatever-the-hell-we-are, who may disagree with him on vaccines, the limited use of psych drugs, the existence of “mental illness” and lots of things. We get his respect regardless, and tend to respect him in return. Pretty uncommon among medical experts, or experts in general. Or people, really.
When it comes to ECT, I can at least say, among those who defend it he is one of the VERY few who will admit that it’s not a panacea, it can have adverse effects, and it can be and has been misused. He’s also dead set against involuntary ECT in any form. I know, I know, many folks here do not believe “consent” to ECT can exist. They’ll tell me I must have been brainwashed, mind-raped or something similar; I could not possibly have consented. But I did. And I also decided I did not want more ECT, and thank god I was not forced to continue. Consent matters. A lot. I respect people who respect consent.
Finally, for all the time he spends justifying the existence of ECT, he uses it fairly rarely. According to an NHS report, in a two-year period, in all of Wales, 360 people had ECT — 180 per year, out of 5 million or so. The corner of NW Wales where David practices (on a 100% salaried basis BTW, in a nationalized health system, no payments received for specific procedures) can’t be more than 20% of Wales, and David only practices in one of its 3 major hospitals — giving ECT to six or seven patients a year, most likely. You may think that’s six or seven too many, but it’d be awfully hard to say he makes his money or builds his career on ECT — or that he goes around forcing it on people either.
We have a number of tribes here, philosophically speaking. Some people believe it is sometimes justified to take a psychoactive drug, and others do not. Some believe there is absolutely no such thing as mental illness, and others believe there is. Rarely will we convert each other, but we can work together on a whole lot of things, and we can respect each other. Healy gives others that respect, to a really remarkable degree, which is one reason why he gets respect in return. Stop reading his column if you must, but it’d be a damn shame to shut it down.
Dear R. Brown — I think I would start you out with this position paper adopted last year by the American Academy of Neurology: Opioids for chronic noncancer pain.
It may not be the last word, but it cites 40 other published peer-reviewed papers on which it is based. If you wish to do the research, this gives you a trail a mile wide.
As for the “100 million chronic pain sufferers”: I think you have answered your own question, and in exactly the same way I tried to. The problem with this figure is that it “lumps together the mildest and most serious problems”: people in chronic severe pain which causes major suffering and functional impairment, and Persons in Late Middle Age like myself whose right hip or left knee acts up from time to time.
The real harm is done when the largest possible estimate of persons affected is thrown into a blender with the worst possible symptoms that can result — and then used to paint a false picture of 100 million people in life-altering agony. This is where I object to Judy Foreman’s attacks on anyone who questions the Opioid Status Quo.
It’s the same as taking the largest possible estimate of people who suffer from SOME type of psychiatric symptom at SOME point, and combining this with the worst possible symptoms that can occur (intense suicidal feelings, terrifying hallucinations, what have you). You end up with a distorted picture which is used to argue that millions more people need to be “properly diagnosed” and put on psychiatric meds.
Amen! I have seen too many clients at my job who have real pain from real back injuries. When they start these drugs they’re in mild to moderate pain, most of the time, and able to do only light work. A year or so later they are in moderate to severe pain, constantly, and can’t work at all. Almost nobody gets their life back — mostly it’s the opposite.
As for Judy Foreman — I do know she’s been in the media actively trying to smear PROP and other groups who challenge the status quo. She wrote a book called A Nation In Pain, promoting the idea that “100 million Americans are in chronic pain.” It’s a bizarre figure that has a lot in common with the estimate of “one in four Americans living with a mental illness.” Both are outlandish; both lump together the mildest and most serious problems, and both are promoted to market drugs.
Califf is a cardiologist by trade, and his research has centered on heart attacks, strokes and related conditions like diabetes and hypertension. The market for drugs to treat or prevent these conditions is huge — almost any human who survives past the age of fifty is a targeted consumer. This has let him become a point man and apologist for the pharmaceutical industry without saying much at all about psychiatry, as far as I can tell. If you asked his opinion he’d likely endorse the “brain disease” framework in a vague general way, and refer you to someone like Tom Insel at the NIMH for details.
But his career in “heart drugs” has run parallel to the mess in psychiatry, in so many ways. He supports expensive and risky multi-drug treatments for cardio-vascular problems, while giving lip service to healthy environments and diet. He supports faster drug trials to get more drugs approved with less and less evidence, all in the name of “bringing hope to patients.”
He has also backed every campaign to lower the bar for a disease diagnosis and drug treatment. That includes aggressively treating people with mild high blood pressure or high cholesterol, in spite of evidence that this can do more harm than good. It includes whole new diseases like “pre-diabetes” and “metabolic syndrome.” (That last one may be “real” in some sense but is often applied to people with a combination of mild conditions: pre-diabetes, pre-obesity, pre-hypertension, what have you).
That’s why the American Psychiatric Assn supports Califf. They know he’ll go easy on whatever dubious psych drugs come up for review, even if he never says a word about bipolar disorder or ADHD. It’s also why we should support the beginnings of a real rebellion out there against over-drugging for cardiac conditions, especially given the awful negative effects of statins on many people’s health. It’s similar to our battle, and plenty of us will end up fighting both.
Seems like the authors of this article are speaking out on some of the issues the media ignores, but participating in the White-Coat Wall of Silence with regard to others. They decry the focus on busting drug dealers and other police measures. They urge more access to drug treatment as well as “harm reduction” (i.e., needle exchanges, etc.) that will prevent addicts from dying, even if they can’t or won’t quit yet. All well and good.
They also want the news to focus on “prevention.” But what’s their key “prevention” measure, according to the abstract? Prescription drug monitoring programs. Dr. Andrew Kolodny has dubbed this approach “The Emperor’s New Paradigm.” It’s the medical establishment’s way to look like they are dealing with the crisis, while continuing to obscure the real issue. (Kolodny is head of PROP, a group of doctors and activists crusading for a real end to the epidemic.)
Most Prescription Drug Monitoring Programs continue to pretend we’re dealing with two separate groups of patients with different needs. There’s “abusers” who deliberately take more than Doctor prescribed, or lie about their symptoms to get the drug, and may sell some of their stash to other “abusers.” Then there are “legitimate patients” who take their drugs for real pain, exactly as the doctor ordered, and should continue to do so for as long as Doctor thinks best. Monitoring programs aim to root out phony patients, “doctor shoppers” (those going from doc to doc trying to get more drugs) and patients whose prior history of drug and alcohol use or mental illness put them at high risk for becoming “abusers.”
Supposedly “abusers” can become addicted, but “legitimate patients” who follow doctors’ instructions cannot. That’s the Big Lie. A big percentage of patients who first get these drugs from their doctors to treat an illness or injury, and take them as prescribed, will become addicted. And no, we have no reliable way to spot “potential addicts” in advance. What we can do is prevent tragedies by concentrating on the main cause of the epidemic: DOCTORS whose prescribing practices are creating new addicts, and DRUG COS who taught them to prescribe that way.
Sad to say, the authors of this article seem mainly interested in pushing the “Emperor’s New Paradigm.” It’s just the newer, more sophisticated version of the Big Lie that gave birth to this epidemic in the first place. Any doctor who wants to be part of the solution must first admit that doctors are the biggest part of the problem.
Ditto here! I got an update from NAMI yesterday. They indicate the bill has been re-titled the Mental Health Reform Act of 2015.
Some of NAMI’s favorite provisions have been taken out, they said with a sigh. They wanted the so-called PAIMI groups (including peer led recovery and disability rights groups) virtually dismantled, or bound and gagged as a condition of further funding. They did not get that. They also wanted strong financial incentives for states to adopt coercive PACT and outpatient commitment programs. They didn’t get that, although they got another financial transfusion for two more years of a big PACT feasibility study.
These “defeats” for NAMI are victories for us, and anyone coming in contact with the mental health system. We should let people know about victories, even tiny ones. At the same time I suspected the Mental Health Reform Act was still unacceptable and still bound to increase coercion in the system. From what I read here, that is the case.
I agree with Oldhead … it would be incredibly useful to have updated “talking points” posted for activists to use. We won’t all be able to wade through the details fast enough, and the devil is in the details! Those who have done the wading need places where they can let the rest of us know what’s going on, and what needs to be done most.
Thanks for the detailed breakdown! It’ll make it easier for me & others to wade through the Kane article.
One thing worried me about the advance publicity for this study a couple of weeks ago: the authors proudly proclaimed that their model could be implemented right now and be practical under current funding conditions at community mental health centers. Would love to know if you think that’s true, or if you’re as skeptical as I tend to be …
First of all these centers are all underfunded and stretched to the max! In many of them meds are doled out by a “telepsychiatrist” in a remote location – or by a nurse-practitioner who is probably supervised by a telepsychiatrist. As far as therapy, peer support, activities, job training etc. they are often either non-existent or skimpy as hell and provided by low-wage, high-turnover staff. I’m betting your clinic spent more than the current skimpy Medicaid allotment in working with each NAVIGATE client, Sandy. Am I right?
Second, and worse yet, most CMHCs are considered “Safety Net” facilities (because they serve largely poor folks on Medicaid) and so are eligible for the “Section 340B” drug program. This lets them buy drugs at a discount, charge patients’ insurance the regular price, and pocket the difference. The more expensive the drug, the more the facility makes by prescribing it.
That provides an awful incentive for cash-strapped hospitals and clinics to put as many patients as possible on expensive drugs – and monthly injections are the most expensive (Invega Sustenna and Abilify Maintena go for about $1500 a pop). There’s a growing trend for CMHC’s to have their own pharmacies inside the clinic, and a whole cottage industry of consultants teaching them how to use 340B. Worst of all, monthly injections are handled on the buy-and-bill system wherein the clinic gets a fee for performing the injection – based on a percentage of the price of the drug! In other words they make ten times as much from a $1500 injection as a $150 injection.
Is this how Dr. Kane is gonna make his model program “scalable” at current Medicaid funding levels? By compelling patients to submit to the highest-priced drug regime they can stand … for the good of the clinic? It sounds gruesome but nothing is too gruesome for the world of for-profit medicine these days. After all, Dr. Kane is now a 10% owner of the Contract Research Organization that Otsuka has hired to test Abilify Maintena in first-episode psychosis. Betcha he knows how to keep the customer satisfied too.
Thanks for validating my paranoia, guys. I think Dr. Mickey is right to smell something a bit fishy … sad to say.
It is wonderful to see the eagerness with which the news of this study has been embraced. People are starving for some sort of approach to “psychiatric illness” (whatever that may be) that is marginally human, and that might take an interest in the prospect of a life worth living. However, I don’t trust the study itself, and want to see the details.
My biggest question: If Dr. Kane is so sold on the prospects for less physically and mentally damaging “chemotherapy” and more communication, then why has he signed on to direct the PRELAPSE Study for Otsuka? (See my column on “The once and future Abilify” from back in May.)
That study will randomly select several hundred young people going through a first psychotic episode and assign them to monthly (fairly high dose) depot injections of Abilify for TWO YEARS. The two studies would appear to lead in exactly opposite directions. And anyone who believes the sales pitch for the RAISE study should be horrified by the PRELAPSE study, it seems to me.
Then again, I guess it pays the same. What gives, Doctor Kane?
Thanks, Sandra! I was really glad to see this article by Benedict Carey in the New York Times — but I want a look at the study.
My main question: If John M. Kane helped lead this study, and he really recognizes the promise shown by less neuroleptics and more attention to the individual …
Then why has he signed up to direct Otsuka’s PRELAPSE Study? That’s the one recruiting now, that will randomly assign young people undergoing a first psychotic episode to TWO YEARS of depot injections of Abilify Maintena. Many of these young people probably do not even “have schizophrenia” (assuming we know what the heck that means which I doubt). Even if they did, it seems to me the NAVIGATE study raises big ethical questions about imposing this on patients.
But PRELAPSE is still going and if anything has added sites:
Aw shucks Katie — I really wish I could picture psychiatry being kicked to the curb in utter disgust by the rest of the medical community. It’d be a great day. But this plague of profit-driven medicine really does go way beyond psychiatry. You’ll find the same drug-company hijacking of research on heart disease, diabetes, multiple sclerosis, you name it … and the same bunch of cheap grifters ready to run whatever “studies” the companies are paying for.
Just take a look at the growing scandal around the pricey and dangerous new blood thinners, Xarelto and Pradaxa. Or the new diabetes meds that all seem to cost $700-1000 a month, put people into hypo-glycemic shock and just might cause cancer. Or the frigging statins. I could go on, but … I think you know the deal already, right? The drugs are commodities, and the purpose of the research is to market the commodities.
The grimly funny part? Psychiatry painted itself into this dreadful corner, largely by trying to remake itself into a “truly medical” discipline! By the end of the seventies they were in pretty bad shape. First they faced a social rebellion with people questioning the old Freudian mumbo-jumbo that tried to blame their pain on their own obscure neurotic conflicts rather than the violence and injustice in society.
Then the insurance industry jumped in and took advantage, threatening to cut off the money for all this muddled, expensive psycho-analyzing. From now on they would pay only to treat Real Medical Diseases! They should have known psychiatry would simply switch gears and devote itself to converting our problems into Real Medical Diseases.
What no one could have predicted is how far they would take it, to the point where they insist that one in four of us is “mentally ill” at any given time. Then again, about one in three of us now are supposed to have “pre-diabetes.” Or “pre-hypertension.” Or pre-something. Oh man. Guess we got a lot of things to fight, don’t we?
I’m grateful to have David Walker’s input as “Minority Mental Health Month” is on the horizon for July. Have been bracing for the usual calls to Raise Awareness and End the Stigma. What bothers me the most is the way these campaigns often blame the “culture” of various non-white communities, where the “Stigma” and “Silence” are supposedly worse than in the dominant culture.
To my mind, stigma against people with mental or emotional problems is just as strong in the dominant culture. The difference — to the extent there really is one — is probably more that Black, Latino & Native American people are less likely to trust the mental health system. They’ve got good reasons for that.
Now don’t get me wrong, I think everyone has a right to mental health care of whatever type they choose, just like physical health care. Minorities get far less access to health care for reasons that range from economics (more are poor) to institutional racism. And that’s wrong.
But David Walker’s article convinces me that “identifying and treating native people who have depression” has made their lives worse not better. A mental health treatment that blinds itself to the real oppression and violence you face, and the real problems that make your daily life depressing, can’t help. It’s more likely to be humiliating and depressing in its own right, even if all the people are “nice.”
Then there’s the pills — and we know poor children on Medicaid actually get more pills, and way more antipsychotics in particular, than children with private insurance. If anyone in the Black and Latino communities is getting “Identified and Treated” just as much if not more than whites, it’s the young children. And the results have been disastrous.
So yeah, I’m 100% for access. But if someone doesn’t want it — or if they think their friends, or their church, or their cousin Patty is a better source of support — stop lecturing them! Respect their choice. They could be right. After all, even with all the burdens that racism puts on people of color, white Americans have much higher suicide rates, and always have.
Just one note — I’m all for exploring life without Prozac but tapering off it SLOW and STEADY is the way to go. Trying “a couple days on, a couple days off” has proven to be a real DISASTER for most of us.
These drugs change your nervous system, and the withdrawal is real. You can end up on a roller-coaster of emotional and physical misery. The worst thing is if you believe that utter misery you feel is “just the way life is without drugs.” That’s what kept me helplessly, hopelessly coming back for twenty-odd years. IT’S NOT. It’s withdrawal.
This is THE most important thing you need to know if you seek to help people put their lives back together without drugs. Hope that doesn’t sound nervy, but it’s true.
oh dian, you have a right to grieve, and I hope nobody (CBT therapist or otherwise) told you that was just “negative thoughts”! I’ve had a lot of losses but never lost a loving life partner. My sister did, and one thing that helped her so much was the company of other women who had been in the same boat. The other is she decided early on this would take her several years to deal with, and she was not going to tolerate anyone urging her to “cheer up” or trying to book her a tourist vacation or a date with a new fella.
You also have a right to be mad! This is more & more a country of, by and for the 1% and it’s putting TERRIBLE pressure on millions of people who deserve a bit of leisure and peace of mind after working hard for 40 years. Any small thing you can do to fight back, whether political protest, volunteering to help others or whatever suits you, can help.
As for that numb and half-dead feeling, I know that one. And strange to say, I actually felt better after getting off the damn anti-depressants. Drugs like Prozac “work” in part by causing emotional numbing, making you less “sensitive.” That might be good for some people for a short time but it’s a crappy way to live. There are lots of tips on this website as to how to do this slowly & carefully to minimize withdrawal-related trouble. There’s lots of good tips & good company in general, so keep coming back OK?
There is no way I can see the euthanization of Godelieva De Troyer, or others like her in Belgium, as a sign of respect for those with serious depression or a token of “equality” with physical illness. Just the opposite. Although most of the practitioners may be well-meaning, I think their concept of depression as a medical illness has made them far too comfortable with labeling people “incurable” and throwing in the towel. It has also let the Belgian medical system and the larger society off the hook when it comes to making a real attempt to help or support people like DeTroyer.
Sort of like the concept of Treatment Resistant Depression, taken to its ultimate logical conclusion.
The article said Belgian mental health care was scarce and of low quality. Far too many people languish in hospitals for months or years, while outpatient treatment is fragmented, limited and hard to get. Nobody in Belgium seemed to disagree.
The euthanasia doctor made the point that these people have often tried dozens of medications and hospitalizations to no avail, and they have a right to say, No more. I can’t disagree with that. But it’s clear there’s so many kinds of support DeTroyer was never offered. Her grown son thought the chance to reconcile with her grown children and grandkids might have provided that little flicker of interest in living that could have helped her go on. Given a chance, he would have tried to make it so. But he wasn’t even told of his mother’s plan until she was already dead.
And what if the simple prospect of a place to go in the morning and have breakfast with friendly people could have brought out that little flicker? That’s all you need sometimes. I know at my own worst times I did not survive because I stood up and dramatically Decided To Live. I survived by putting off suicide, one day and one week at a time. My doctor didn’t coerce me; he never tried to have me locked up against my will to thwart my desire to die. But the fact that he never gave up on me was a big part of what let me put off the end for one more week.
If a system like the Belgian one had been in place back then, and if my wish to die had been respected and even praised and defended by my doctor, there is not a chance in hell I would be alive today. And I’m glad to be here! Doctors have tremendous authority, both psychological and practical, and these Belgian doctors seem willfully blind to their own role in leading, maybe even pushing some patients down the path to death.
THANK YOU for bringing us this news and challenging us to action! It sounds like this legislation has an excellent chance of passing in California, but is probably NOT a done deal. If so, Mad in America folks in CA can at least write to their local papers, call their representatives and do what we can to support this. Once passed, it will be a tremendous resource for getting similar laws passed in other states, and maybe even nationwide. Up until now in Illinois it has been very easy to shoot down even the most modest initiatives to “study the problem” by labeling the proponents Scientologists. That won’t be so easy to do if this becomes the official policy of a big state like California.
Among other things, this is a racial justice issue, at least where I live. In general Blacks get less access to voluntary mental health services, just like they get less access to everything in the healthcare system. But wherever psychiatry is used to coerce and control, Black people become the first victims. Black kids are way, way over-represented in the foster care system — and without family members empowered to speak for them, they’re the first to get drugged.
There was a sad and startling news story last month to the effect that suicide among Black children under 12, boys especially, had doubled since 1993. Startling, because in every other age group white suicide rates are double or triple those of Blacks (higher than Latinos too). And also because 1993 was not a very good year for the poorest youth in the US. It was the height of the crack epidemic, and a time of wholesale dismantling of public housing, welfare etc.
No one said it publicly that I know of … but I thought the drugging of kids on Medicaid, and especially kids in foster care, had to be a factor in this tragedy. Ed, do you think this is true, and can we help in some way to sound the alarm?
Lots of good ideas coming in! To Frank, I’d say go for it — any poking around you can do in the U. of Florida, either Jacksonville or Gainesville, would be great. Especially if you already know people there, which it sounds like you do.
Dr. Mickey Nardo has posted a 3-part series on this at http://www.1boringoldman.com . Very good too! He’s more conservative on the issue of antipsychotic meds than many folks here — for people with longstanding psychotic symptoms, he’s skeptical about prospects for recovery with out them. Yet he manages to explain beautifully why “locking in” a particular drug treatment for someone in a first episode is 1) totally unethical in general and 2) exactly how Dan Markingson died in that 2004 drug study. (He also gave links to this Mad in America article.)
On another discussion, Dawn suggested MIA activists take part in the World Social Forum conferences this summer (late June I think) in Philly and the Bay Area. This sounds like a great chance to share agendas and ideas with all sorts of people fighting for their own liberation. The Philly conference is anchored by a longtime “welfare rights” and economic justice group and a disability-rights coalition. This study is just one of a whole lot of issues we could bring up there, of course.
Just a note on the “Foreign Correspondent”: I live in Chicago, Kingdom of Cook County, IL. RxISK.org lives on the Internet; its activists are in the UK, Canada, USA, Ireland and New Zealand so far. The key medical advisors are in Ontario, CA (Dee Mangin) and North Wales (David Healy). Not sure what that makes us … but glad to be on MiA anyway!
Great idea! I will leave a note at 1BoringOldMan — he has written some good stuff lately about Abilify and its new little brother Brexpiprazole. Feel free to post this on any website, Facebook page or whatever where people might be interested.
One mental-health worker I talked to in Chicago was very bummed out to hear of this, because she “thought Stanford was a progressive place.” It made me think: Lots of these universities cherish their liberal reputation. Some even have a few people working on good, constructive recovery projects in other departments, or even in the med school, while the major funding goes to crap like this that leads in precisely the opposite direction. They see the innovative, progressive stuff as cover I’m afraid.
At every one of these schools I bet there are academics (and students!) who would be horrified at what the other academics are up to, just a quarter-mile away. Some of them may even be willing to raise a little hell, who knows?
I’m afraid you’re right, Frank: The boys at North Shore Long Island Jewish Med Center are also working on drug therapies for “Attenuated Psychosis Syndrome.” They’re looking for youth ages 12-25 (!) who have never been diagnosed with any psychotic disorder, but who pull at least one high score on a checklist of “prodromal symptoms.” Subjects will get either Abilify, 5 to 30 mg., or Prozac, 10 to 60 mg. This sounds risky as hell – maybe that’s why they haven’t gotten any universities to join.
However, UCLA is conducting its own study of depot injections for young people with a first psychotic episode. It’s extremely similar to the PRELAPSE Study, except that the cosponsor is Janssen and its new injectable product, Invega Sustenna. Another group of studies is looking at both injections and oral clozapine as a first treatment choice, using the excuse that these medications might prevent “cannabis abuse” and “alcohol abuse” in younger patients.
What do you think would be the best way to create some pressure on your local medical school and get them to think about dropping out of this mess? (I don’t know which professors, etc. are running the studies in each school, but it should not be too hard to find out.)
I think we can make common cause with many other groups of people who feel more exploited than served by modern, profit-driven corporate medicine. My volunteer work with RxISK has brought me into contact with people with arthritis, Crohn’s disease, breast cancer, epilepsy and MS who also find their doctors being transformed into mere agents of the pharmaceutical, medical device and hospital industries. (And don’t even get me started on the orthopedic surgeons.) Not to mention the “medicalization” of our elders, which both the elders themselves and their grown children are coming to realize is producing far more misery than health.
To quote from How We Do Harm, a surprisingly hard-hitting expose from Dr. Otis Brawley of the American Cancer Society: “Too often, helping the patient isn’t the point. Economic incentives can dictate that the patient be ground up as expensively as possible with the goal of maximizing the cut of every practitioner who gets involved.”
Cardiologist Harlan Krumholtz, a Yale professor, recently declared that “informed consent is a joke” in his field because patients are being sold expensive and potentially life-threatening procedures with no clear idea of the risks, benefits or alternatives. And thousands of people are waking up to the public health disaster imposed on us by “pain management” with addictive and health-destroying high-dose opioids — including a few gutsy docs like Andrew Kolodny who have put the blame squarely on the medical profession rather than on individual drug “abusers.”
The 3d Preventing Over-Diagnosis Conference, happening next month in DC, might be a good place to look for allies, if we can get some members of our movement there. We’d find out about plenty of bad barrels, I think — and find a lot of the participants are open to our story, simply because they have been burned enough times by corrupt medical experts in other fields to be willing to question the sacred narrative of “chemical imbalance” as well.
One aspect of our plight that’s unique: Psychiatrists are not necessarily more powerful than other medical guilds, but the turf they lay claim to involves the human condition itself — who we are as people and who we can become. Long before the “biological revolution” of 1980, psychiatry was highly prone to being used to prop up the status quo, calling on people to look within, or blame their mothers and families, rather than question society’s wrongs, and branding rebels with the stigma of a diagnosis.
Because the bio revolution made psychiatrists dependent on patented products of industry, it strengthened and centralized this process in a way that made internal rebellion much harder. But it also brought them into line with all the most pathological tendencies of modern for-profit medicine as a whole. In that sense, maybe we’re no longer alone, eh?
That makes sense to me. There are plenty of groups and opportunities for “good patients” who are grateful to the system. Just check into your local NAMI, Mental Health America or DBSA support group. I tried my best to participate in those groups but finally gave up; I was tired of being the Negative Person, the one out to ruin everyone else’s nice meeting. Didn’t think I was accomplishing much, and definitely wasn’t getting anything that made me feel stronger.
I think the role of paid “peer support specialist” is an uneasy one, fraught with potential contradictions. In the right setting, where they really have autonomy and respect, they can do tremendous good. But I’ve met more than a few who are fairly bitter and cynical, feeling like they’re just providing cheap staffing within the same old system. At its worst, the institution of Peer Staff could serve to co-opt those who would otherwise be genuine peer leaders, weighing them down with a stake in the system they wanted so badly to change at first.
Could this be one of the problems at the Alternatives Conference: that a large number of participants are both “peers” and paid staff in the system we’re supposed to be trying to change?
Thanks for this Sera! Having just appealed for a “bigger tent” in the discussion on Nancy R.del G’s blog, it made me think: exactly what do I mean? For me, it meant a willingness for us survivors, or consumers, or persons-with-lived-experience etc. to work together, even if we don’t all identify with a philosophy of “antipsychiatry” or agree on exactly what its tenets are. If I’m for self-determination and the right to know the truth about the treatments being pushed on me, that should be enough, even if I’m not a 100% follower of Thomas Szasz or R.D. Laing.
A “big tent” that also covers professional organizations (or “mental-health advocacy groups” that bring together professionals, parents and misc. concerned citizens) is something else again. For them, I think “coalitions” are generally a better goal than “big tents” for their own sake. And coalitions are built on action. Is there a common action that we’re all willing to take? If we’re mainly talking this weekend, is our talk bringing us any closer to common action? Then it’s valuable. If not, maybe it’s a waste of time.
And for damn sure, being in a coalition with someone doesn’t mean we agree to have any of our folks systematically disrespected. If you want one of us to come “share our recovery story” you also have to accept our input on what needs to change in the system, and what your group needs to be doing. Otherwise it’s a mockery of “coalition” and we really are no better than cute fuzzy mascots. No thanks!
Amen to that! Thanks Ted.
Thanks so much for this, Nancy! Like you, I’m happy to work with people who call themselves “anti-psychiatry” but don’t really identify with that label myself. Although I sure-as-hell understand why so many people do …
To me the most important thing is building that movement for freedom and human dignity, and having it remain a big tent. If there’s room for people who believe in homeopathy and those who don’t, or for folks who trust chiropractors more than MDs and folks (like me) who trust them even less, then surely there’s room for people who disagree about things like: is there such a thing as mental illness and could some of it be partly biological? Or: Is it always wrong to use a substance, prescribed or unprescribed, to manage your pain?
I think the bio-bio-bio approach has been built on greed and arrogance, and has damaged a whole society by telling people their normal pain and confusion is a brain disease to be treated with long-term drugs. I also think it’s damaged a whole lot of people who may actually have some kind of illness with some kind of constitutional or physical basis. Am I one of those? Damn if I know; my answer might depend on what day you ask me.
Whatever my problem is or was, I do know the drugs I’ve been offered to treat it can do as much harm as good, sometimes much more. None of them should be taken for life, I’m convinced. But I agree that nobody should be shamed, lectured to or looked down on if they continue to take one. Life is rough; the powers that be in this society don’t give a damn about you, and neither does Mother Nature sometimes. We all cope as best we can.
We can give each other advice, but if there’s one thing the goddam drugs have taught me, it’s that we’re all as individual as snowflakes. We’ll probably never come up with a way of life that works for everyone. Matter of fact, I think that’s what I’d most like to pound into the head of the average doctor … you will never be so brilliant that you no longer need to ask your patient what’s going on.
Actually this study radically under-states the extent of the problem. It is by far the LOWEST estimate of the years of life lost by people diagnosed with mental illness that has appeared in decades. Previous estimates have ranged from 13 to 30 years lost.
One good source: the 2010 report from the National Assn. of State Mental Health Program Directors. Hardly a radical group:
They estimate that people with “serious mental illness” die about 25 years before their peers without a diagnosis. And they admit that the effects of medication are a major part of the problem (although their solutions are timid). This is a much more serious document.
Don’t know how this latest study produced such a low number: perhaps by mixing in a lot of people with mild or transient anxiety disorders, etc. Perhaps by “adjusting for confounding factors” in a dishonest way, e.g. adjusting for smoking or obesity without acknowledging that both can be in part medication driven. But I smell a rat for sure.
For what it’s worth, a single “trip” on this drug (well known both as a psychedelic plaything and a “twilight anesthetic” for minor medical procedures) strikes me as a safe bet. If someone gets temporary relief from this experience — and can use the experience to interrupt a crisis and start climbing off the floor — more power to them. That’s how ketamine was being used in the initial reports that sparked all this “possible breakthrough” chatter.
Maybe these are the real reasons Dr. Alan Schatzberg (former prez of APA, who almost never met a drug he didn’t like) is issuing dire warnings about this one:
First, ketamine has been off-patent for decades, so it’s hard for drug cos to make a profit on.
Second, given that each dose will mean a trip to the clinic and being “out of it” for a day or so, it’s hard to find cost-effective ways to put patients on Maintenance Ketamine for Life.
Most of the “mainstream” research & commentary I have seen focuses on solving these two alleged problems, i.e., finding a way to convert ketamine into a maintenance medication. A scary thing, because it’s chronic use that is most likely to damage patients’ brains. Much as a single good stiff drink to calm your nerves after a frightening experience may be fine … but Maintenance Bourbon Therapy for Generalized Anxiety Disorder would be a disaster.
Thank heavens Dr. Schatzberg and his corporate sponsors can’t get a patent on booze!
It looks like Robin Williams was suffering from an early case of “Lewy body dementia” — a nasty piece of luck, as it can cause both movement difficulties that resemble Parkinson’s, as well as hallucinations and paranoid feelings. People with LB dementia are often mis-diagnosed with Parkinson’s — another nasty piece of luck, because LevoDopa and other drugs for Parkinson’s can cause hallucinations too, as well as compulsive gambling, spending, sexual behavior etc.
He was also on Seroquel and Remeron (mirtazapine) — which makes me think he was almost certainly diagnosed “bipolar.” There was certainly a lot of loose talk in the media insisting he was bipolar and even scolding him to some degree for not being more open about it. Finally he did struggle with alcohol and cocaine abuse for years. If you’re naive about street drugs (like most shrinks) and inclined to see brain disease everywhere, I’m sure a Hollywood actor whacked out on coke and whiskey looks like an obvious manic to you.
Seroquel and other antipsychotics can absolutely induce Parkinson’s-like symptoms. The “new” antipsychotics don’t do it quite as much as the old ones, but they can do it. Even if you had such symptoms to begin with, taking Seroquel was likely to make them worse. In addition, the Seroquel would have been working against the LevoDopa: one increasing dopamine levels, one decreasing them. Must have felt like a horrible seesaw.
The poor man. Based on what I see of American medicine lately, I’m betting he had one doctor treating his “Parkinson’s”, another doctor treating his “Bipolar”, and the two never talked. And in the end it looks like he didn’t have either one. If this is the treatment you get when you’re rich and famous, and can see only the top specialists, you don’t want to think how the average person is faring.
It also teaches us a sad lesson: Psych drugs aren’t the only drugs that can mess with your mind.
Hi John! I’ve been out of the Chat here lately but anyway:
The study is described in Chapter 7 of Healy’s book Let Them Eat Prozac. His original goal was to figure out if personality types (extrovert-introvert, novelty-seeker v. risk-avoider etc.) could predict who would respond well to different antidepressants and who would have trouble. All twenty “normals” (mostly doctors and nurses) took Zoloft for two weeks and Reboxetine, a non-SSRI AD, for two weeks.
His theory was largely borne out: everyone had one pill they kind of liked to some degree, and one they didn’t — and Zoloft actually got more “likes” than Reboxetine. But that was overshadowed by the big finding: Two women became suicidal on Zoloft. Both of them were pretty badly rattled by the experience; even though they knew it was really the drug, it still shook up their view of themselves. Both also got more “disinhibited” and reckless in their overall behavior.
Healy himself was pretty rattled; both from concerns about the two women, and because he didn’t expect this finding. He undertook the study mainly out of interest in Reboxetine as a possible alternative for people who weren’t helped by SSRI’s or felt worse on them. He was already learning about suicidality on SSRI’s but had thought it was rare enough that there was little or no chance of it showing up once in a group of 20 people. In fact it showed up twice, a 10% rate — pretty shocking.
Two people felt depressed while on Reboxetine as well — but not suicidal. It was more that they felt lethargic and had a case of the blues.
It should have said “Motivational Interviewing, Pharma-style”, I guess. Clearly the drug companies aren’t committed to the same humanistic goals as those who developed this style of counseling. They’re just co-opting a few ideas and turning it into the latest industry marketing buzzword. Here are links to the first article on David Healy’s blog, and another really good one by Maria Bradshaw:
I have to think that real M/I counseling would be at its most ethical AND its most effective when therapist and client agreed on the goals. That’s the opposite of the bogus Pharma version, where the goal is officially “good health” but it always translates into “take our drug” – whether it’s the best bet for improving your health or not.
Good point Elocin – I’ve had the damned Irritable Bowel Syndrome since childhood, long before I had any psych meds, and I’ve heard this is not uncommon; it might reflect a connection. But surely the meds have to be messing with a lot of people’s guts: the digestive tract is wired into the central nervous system, after all, and there is more serotonin in your gut than in your brain.
What struck me was how similar the selling pitches are for drugs in very different categories. Right now Takeda is trying to drum up enthusiasm for its new antidepressant, Brintellix, by sponsoring a so-called consciousness-raising effort by the Depressive & Bipolar Support Alliance (DBSA). It’s called Target Zero to Thrive. The idea they push is that “consumers” are rising up and won’t settle for anything less than Remission – i.e. zero “symptoms.” We want innovative thinking, and better services, and oh! of course – new drugs!
This is what you should want if you are “empowered” – if you settle for mere improvement, you must have low self-esteem or something. It’s the same idea AbbVie pushes to sell Humira. You shouldn’t be content with having your symptoms well under control – you should shoot for zero symptoms. Remission Is Possible!
Well, I don’t believe in Total Remission. A good part of my equilibrium rests on having realized that I am who I am, and I will never be Polyanna, or the life of the party, or wear a size four. I also think the quest for “total remission” leads to dangerous excesses on the part of doctors. I am wary of being chemically carpet-bombed in an effort to rid me of every symptom.
I really liked what Ken Spriggs, the guy with Crohn’s, had to say. He’s brought his own symptoms down from being quite disabling, to being a mere pain in the ass. Any sensible doctor should celebrate this with him – not try to get him to take huge risks for some goal of Zero Symptoms.
Unfortunately, yes — especially if they’re black or Latino. That’s what they US system does. One in three black men in their twenties are under some sort of criminal-court control, largely for drug crimes, in spite of the fact that blacks and whites use illegal drugs in roughly the same numbers.
It leads to a lot of horrible results for individuals and society. One of the more ironic ones is that people in the US who call for “treatment, not jail” are regarded as very progressive, even if they advocate coercive, invasive and inhumane treatment strategies.
Fantastic article Christian, and thanks for the wake-up call! It gives me the ammunition I need to explain to others what’s wrong with the Murphy bill and other proposals that hide behind “helping the needy” and of course, “busting stigma.” We need programs that start with what every human being needs: a stable place to live, refuge from violent or coercive homes, schools & institutions, a place to hang out with friends, and someone to talk to whose job is not to rat you out.
I’m not surprised that NAMI supports the Murphy bill — and I guess I should not be surprised that Keris Myrick supports it as well. Since she has been a columnist here, I hope we can get her to stop by and write something explaining her point of view. I for one promise to answer her without “raging out” — might have to write a red-hot first draft and then cool it down, but what the heck.
I feel like she’s a dynamic person who was brought in to demonstrate the “New Face of NAMI” — one where patients/consumers/survivors/whatever are equal partners; one that’s open to dialogue with everyone; multi-racial and open to diverse cultural perspectives. Etc., etc. If there were some genuine reality behind the image-making, I’d have to admire the role she’s playing, even if I didn’t agree with every single choice or compromise she made. But if it’s all just a bright coat of paint on the same old house — which is sure how it looks to me — then she is just getting used to put a friendly face on oppressive policies.
I am so glad that MiA ran this article with such a good thorough list of the critiques of this poorly designed, dishonest “study.” We can all be ready to explain, calmly and confidently, why it is, um, such a crock, to use the scientific term.
Last night I looked up the ICD-9 code that was their “proxy for suicide attempts.” Code 969, Poisoning by Psychotropic Agents:
Most of the pills people use to try & end it all are not included. Not opiates, Tylenol, aspirin or NSAIDS: they’re Code 965, Analgesics. Not anti-convulsants: that’s Code 966. Not barbiturates or sleep drugs like Ambien: that’s Code 967, Sedative-Hypnotics.
What DOES it include? Well, for starters, SSRI’s and other antidepressants (how perverse is that?). What else? Hallucinogens, including marijuana and LSD! I’m sure thousands of kids are dragged in to the ER each year for problems related to pot … but I doubt even a handful were trying to toke themselves to death. Major distortion there.
It does include antipsychotics. Also benzos like Valium and Xanax, which are a realistic way to attempt suicide, but are also madly popular with the youth both as a recreational and prescribed drug. Then there’s stimulants, probably the #1 favorite drug of teen boys, and rarely used for suicide I would think. They include Adderall and Ritalin; also caffeine. Which means the young knuckleheads who end up in the ER after chugging “energy drinks” all weekend get to count in the Great Youth Suicide Epidemic too.
One of the real dead giveaways that they are on the wrong course is this: While teen girls far outnumber boys in nonfatal “suicide attempts,” especially those involving pills, the article found its strongest, most compelling effects among “adolescent males.” To me this is strong evidence that they are mis-branding accidental overdoses among recreational users as “suicide attempts.”
There’s an epidemic of Rx drug abuse in this country, involving both opiates like Vicoden and OxyContin often mixed with Xanax, Adderall, etc etc. that had just begun to really take off in the time period that they studied. It is reaching crisis proportions in Massachusetts, which you’d think the researchers at “Harvard Pilgrim Healthcare” would know about, if they read the morning papers. But they were so focused on getting the results they wanted that they were blind to everything else.
I have a question: Here in the US I hear more and more about “maintenance ECT” in which some people get shocked every 90 days or so for several years at a time. This REALLY alarms me. We know that frequent mild concussions can be more damaging than one or two big ones. And in treating epilepsy it’s often claimed that repeat seizures have to be prevented at all costs because they’ll lead to permanent damage.
This seems to have been the kind of ECT imposed on Ray Sandiford in Minnesota. Has anyone else heard of this in other areas?
I hope at least this shines a bit of light on Robert Gibbons and his “Center for Health Statistics,” which has made a cottage industry out of dubious statistical analyses to benefit the pharmaceutical industry. The most notorious has been their efforts to topple the Black Box Warning on youth suicide and SSRI’s with studies based on data from industry, provided only to them. But trust us, they say, it proves there’s no link between suicide and SSRI’s.
They have provided the same service for other drugs associated with suicidal impulses, including the anticonvulsant Neurontin and the asthma medication Singulair, which has been linked to suicidality particularly in children.
Robert Gibbons has been well rewarded, at least … In November of 2010, after 30 years at the state university, he and his entire “Center for Health Statistics” moved on up to the University of Chicago, Pritzker School of Medicine. And a few months later Gibbons was named a Pritzker Scholar for 2011. What’s that, you ask?
“The Pritzker family of Chicago, widely known philanthropists whose many business ventures include the Hyatt Hotel chain, made a gift of $30 million to the University of Chicago in 2002. The gift has been used to recruit outstanding new faculty to the Biological Sciences Division of The Pritzker School of Medicine. These Pritzker scholars form uniquely synergistic and powerful groups of investigators. To date, there have been 18 Pritzker Scholars.”
You won’t be too surprised to learn that a lot of the Pritzker family capital is tied up in pharma and biotech these days. Or that family spokesperson Penny Pritzker was and is Obama’s top fundraiser. The relationship between Pharma and both parties remains pretty “synergistic and powerful.”
To their credit, Bernard Carroll and John Nardo fought hard to unmask the Gibbons study “exonerating” SSRI’s. Maybe this latest scandal will finally unmask an academic “center” that to me at least looks like nothing more than a stable of hired guns for the pharmaceutical industry.
Actually, this is more about people with diabetes and failing kidneys being able to get insulin – not “mental health care.” It’s just that the relief from constant worry over such matters has an immediate effect on their mental health. Surprise, surprise: Living on the ragged edge of survival can drive you a bit mad.
Two things I noticed: one, this is about people who qualify for the expanded Medicaid program, not the private insurance being sold on Healthcare.gov. Many of those folks will find themselves with such high deductibles that trying to get healthcare of any kind will remain a source of intense anxiety (and bill collectors calling on the phone).
The other thing is that even the Medicaid folks may find it hard to locate a doctor who’s willing to see them. The majority of U.S. docs avoid Medicaid patients like the plague, because of low reimbursement rates. And the article notes that many of them still can’t afford adequate food and shelter – which might do even more for their health than a Medicaid card. Good insight there.
I suspect we’re still in for some rough sledding health-wise in the good old USA – Obamacare or not. Big Insurance, Big Pharma and Big Medicine are still in the driver’s seat, each one watching out for its profit margins first and foremost.
Actually I think even mainstream medicine realizes laughter is massively healing. Lowers blood pressure, reduces pain and the whole nine yards. Certainly, the observation that comedy is a way to deal with pain is centuries old … Trouble is, you can’t patent it and charge $500 per month.
What if, instead of concluding that “comedians are likely to be mentally ill” they acknowledged that most “psychotic” styles of thought are at least close cousins of highly creative and adaptive styles of thought? Things our civilization actually needs, in some form?
Loose associations and racing thoughts … where would we be without those? Dead, most likely, or still hanging out in caves living the Nasty, Brutish and Short Life.
This strikes me as a real important point, Copycat. And it explains why the “summaries” of research posted by the drug companies, or other forms of fake “disclosure” that GSK & Co. want us to settle for, aren’t enough by half.
Before you say how many people found the drug “effective”, you have to define what “effective” means. Whoever gets to write the definition, controls the discussion. And we are stuck with a hyper-capitalist system that lets the people who are going to sell the product write the definitions of whether it “works” or not.
There have been many studies that measure “depression” by means of rating scales that are very heavy on sleep issues: can’t sleep, wake up early, restless sleep, etc. So anything that tends to help you sleep comes out as much more of an “antidepressant” than it really should.
Listen to the people taking it and they may still say they feel no pleasure, they think about death, they have trouble concentrating, etc. That’s why we need to open up these damn studies to find out what happened to the actual people — and why even honest studies will never be a substitute for listening to people.
Would just about any productive activity do? My guess is: yes and no …
Bread ain’t magic (and I am far too prone to slather it with butter – a risk factor not present with woodworking or sewing). But consider this: It’s quiet. It smells good. It’s soft. You use your hands, and use them a lot. You probably use some other muscles too. When you’re done you’ve got something that’s good to eat, and that right there can calm your nerves. And you’ve got something that tends to make other people happy too!
That puts it head and shoulders above most of the things we do at work, whether diddling a computer or running a punch press. And better than most of our noisy, screen-centric forms of “entertainment.” I think there’s a lot of wisdom here if you don’t get too hung up on a single gimmick. By all means, if you’re gluten-sensitive, make guacamole or something. Make music or work in the garden, if that’s what turns you on. But working with your hands, and seeing a result, is something that’s much too rare for far too many of us.
Too bad no one can patent it, eh?
Thanks so much for putting a spotlight on this! I think we need to keep the pressure on … already the comments page at CBS is filling up with protest & critical comment. You can add to it here (the segment title was “Imminent Danger”
Here’s what I wrote: 60 Minutes owes its audience a contrasting view. Forced mental health “treatment” especially forced drugging as advocated by Dr. Torrey is rejected by many thoughtful experts (and those of us who might need the help one day!) The public must understand that these drugs are not magic wands as Torrey and his backers would have us believe. They help some people greatly, they do not work for others, and in a substantial minority of cases they can CAUSE agitation, suicidal thoughts and yes, violence. They are not a substitute for humane and individualized care – but they have become just that.
Like James Holmes before him, Aaron Alexis actually sought help at a hospital and was given a fistful of pills – trazodone in Alexis’ case, Zoloft and Klonopin in the case of Holmes who was ironically a graduate student in neuroscience and sought help from psychiatrists affiliated with his university. To say the least, the “helping professionals” don’t seem to have helped and may have critically worsened the situation.
Check out the recent debate in Scientific American initiated by columnist John Horgan and Dr. David Healy:
There are reasons why people may “feel better on the drug” which don’t have to do with simply kidding themselves or desperately seeking the approval of doctors and others who have power over them. We now have a black market in Seroquel in this country, both on the streets and in our prisons. My guesses as to the reasons: first, people are dosed with this stuff both in prison and in the US armed forces as a remedy for agitation and anger, nightmares, insomnia and PTSD. Once you’re on it, it appears to be wicked hard to stop, with “rebound” distress that may be worse than the distress you felt before the Seroquel. I do not know if it can actually cause “rebound” hallucinations or paranoia — maybe Sandra does?
Another reason is that people are living in hellish environments and dealing with hellish things (especially in prison and the army which are both producing people with the constellation of suffering we call PTSD). When you’re going through hell, a pill that lets you sleep 12 hours a day starts to seem awfully attractive.
Finally, I’ve never experienced classical “paranoia” but have watched it from the outside (both in people on coke or PCP and those said to have schizophrenia). It looks like a terrifying experience. I would not judge anyone who took Seroquel or Zyprexa in a crisis of this kind. I just think they need to know that these drugs are like chemotherapy, terribly damaging in the long run, and just as you wouldn’t take toxic chemo drugs a day longer than necessary, you should never let anyone sell you Zyprexa or Seroquel as a long-term solution.
Working in workers comp I deal with many folks with chronic back pain who have been put on these drugs (zyprexa and even more often Seroquel) simply as an industrial-strength sleeping pill. The results can be a devastating pile-up of side effects that are the LAST thing you need if you’re coping with a serious back injury: serious, debilitating weight gain and diabetes, drowsiness. I’m sure the long-term effects on your mental abilities are not good either … of course so many doctors are giving these drugs out in tandem with the Vicoden, Ambien, Xanax and lord knows what all else that fixing the blame can be a delicate task …
I also wonder if these drugs — especially Risperdal — are doing their nasty bit to contribute to the breast cancer epidemic in this country. They do boost prolactin and can cause men and boys to develop female-type breasts. I read last year that women with serious mental illness have three times the breast cancer risk as the average American woman — and breast cancer is NOT strongly linked to smoking so that’s not a likely explanation.
Today is National Suicide Prevention Day, and I’ll send out your story from last week on Twitter:
SSRIs, agitation, suicide: This man lived to tell the tale, others didn’t. Respect patients’ right to know. http://www.madinamerica.com/2013/08/journey-madness-back-part-2/ #WSPD
THANK YOU for telling it! I’m convinced most people who experience these thoughts never tell a soul … and the guilt and fear they cause may be a factor in many suicides. I have a friend who experienced eerily identical thoughts (stabbing the whole family, even the dog!) while on Cymbalta. Your eloquent and well-told story could save more than a few lives.
It’s also not easy to stand in front of a profit-driven freight train such as this genetics company! You’ve inspired me to learn more about the issue. Thanks again.
THANKS for this book, Dr. Gotzsche! These are indeed the methods of the mob. Rx drugs are actually the third leading cause of death in the developed world??
I’m helping out at RxISK.org with the petition against AbbVie’s lawsuit. I’d read that your quest for all the studies on duloxetine (Cymbalta) was cut short by this lawsuit? Are you still waiting for that data?
As I’m sure you know, this is vital info for many of us in the US. Cymbalta is being hyped as a painkiller for everything from diabetic nerve pain (where it works pretty good?) to low back pain (really iffy!). We have an almost perfect storm of an uncontrolled experiment here, as people get this drug from their GP or orthopedic surgeon with NO awareness of its psychotropic properties and/or side effects! Grateful for your work… hope you get to finish it.
Thanks Ted! and thanks for the alt-health directory, Duane, looks interesting.
I was struck by Steindor Erlingsson’s column about his SSRI experiences. What he was not told was that his sudden spate of strange violent thoughts about stabbing his family were not coming from within him, but from the drug. The guilt he felt was beyond belief … and I am sure that this type of guilt has contributed to many, many suicides. (Not to mention those who couldn’t resist the impulses…)
How many of the dead would still be with us if we had something as simple as the right to know?
I like the way you think mjk! That’s what RxISK is about in general of course … but we’ve started a campaign to solicit reports especially from people who have taken AbbVie drugs.
That includes Depakote by the way … the magic mood stabilizer (well not exactly!) and anti-seizure drug. I took that for awhile, not as a M.S. but because I was having “migraines” that turned out to be caused by Effexor. Anyone else got a Depakote story??
To get to the petition, click the link on the RxISK page that says Petition Is Here.
Here is the direct link if it’s useful:
About 1,750 signatures so far, from all over the world! Actually we have about twice as many Canadians as Americans (wanna help us catch up?)
People have left some amazing comments … many have suffered medication side effects or have lost a loved one (especially to SSRI’s). Many who have been put through the wringer by statin drugs, new antibiotics like Levaquin and Cipro, and Humira. Lots of doctors and nurses too, who feel they are getting used by these companies.
Try this one:
Service utilization in 1896 and 1996: Morbidity and mortality data from North Wales
“Death as a direct consequence of mental illness is commoner now than 100 years ago.”
Healy & Co. conclude that those who died within 5 years of their hospitalization in 1896 usually died of TB, which was not directly related to either their illness or their treatment (although it was related to being confined to a crowded institution). Those who died within 5 years of hospitalization in 1996 usually died by suicide, and this appears to be related to the medications used today.
Hermes — I think the high death rate Healy found among the patients of the Denbigh Asylum 100 years ago was not due to psychosis, as a disease or a risk factor. It was due to TB, and that’s because every group of people confined to crowded institutions in the 19th century had a high risk of TB. It was as true for prisoners and people in “the poorhouse” as it was for people in mental hospitals. Psychosis itself did not raise your risk of getting TB. Being locked up did — especially in crowded quarters, especially if food & sanitation were not the best.
So in both eras, a “psych patient” had a higher risk of dying before their time. At least back then it was for reasons that were “incidental” to your treatment — now it’s for reasons that are inextricably entwined with your treatment.
Excellent book. This is a diagnostic system with real world validity
The other day my boss and I were discussing “Bob”, a consultant we often work with. A really good guy, but way too high-strung, and constantly sweating the small stuff. I was trying to describe the guy and getting lost in a mental thicket of psych terms — OCD? Anxiety? Asperger’s? Nothing really fit.
“He’s a nebbish,” my boss said flatly. Bingo! Not only was this accurate, but I actually get along great with Bob these days, now that I know he’s a nebbish. What he calls me, I don’t want to know, maybe a schlemiel? Whatever.
You guys are fabulous! (I had to log in and tell you that before I even finished reading the article.) It is a great campaign you are waging and it will help people far, far beyond the graduate schools. So many colleges and even high schools are developing almost militarized approaches to any sign of distress from a student that might be “psychiatric.”
Reading about how you were treated, Nev, I almost put my fist through my laptop. These people would be ashamed to treat an accused “Al Qaeda terrorist” in such an utterly inhuman manner. For anyone who doesn’t already realize it, you are proving that the “brain disease” model is not reducing stigma but fueling it to a horrifying degree.
First thing I gotta do is email this to my sister who teaches at a state college on the West Coast, and order her to pass it along to all her friends. Will try to pass it to other professor types as well. Mazel Tov!!
Here’s the most recent comment I’ve seen from David Healy on ECT — on his blog a couple months ago, a guy named Michael asked what did he think of ECT; specifically, could it mess up one’s cognition and memory? Interesting answer … whether it’s the same one he would have given five years ago, I’m not sure. I’d say he’s been known to change, and what use is anyone who never does?
“Michael – its not my role to tell you or anyone what you should or shouldn’t have. Have never wanted anything banned. The key issue if you and i are working as a team is that we have a full set of information available to us – which we don’t have for any drug and in this sense it is difficult to do pharmacotherapy with informed consent.
When it comes to ECT there are lots of people who want it and others who would never have it. I would want it available for those who find it helpful and would champion the rights of those who do not want it to avoid having it.
Regarding what to tell them re memory it would be something like this. When you get to the stage of contemplating ECT you almost certainly have had a bunch of treatments that affect memory. Benzodiazepines have very clear effects on autobiographical memory. Antipsychotics and mood-stabilizers have clear effects on set shifing – being able to remember someone’s phone number.
ECT also certainly has effects on memory also but its hard to know precisely what. I have had people tell me about their memory problems post-ECT and describe very clearly memory problems of the type antipsychotics cause which they blame on ECT even though they are taking antipsychotics.
Overall far more memory problems are caused by drugs than ECT and vastly more people are on involuntary drug treatment than involuntary ECT – so if there is an issue to campaign about it should be the drugs.”
This is a tremendous opportunity to bring our ideas into the mainstream … but it won’t happen automatically. The Catholic Church, like any other, is part of society and particularly in cities like Chicago where it’s a big wealthy institution with hospitals, school systems etc. it makes its accommodation with the power structure no matter what the Vatican says.
Two examples: No amount of encyclicals about the dignity of labor and the right to organize have prevented out-and-out union busting by the Resurrection hospital chain here; and no amount of preaching about a consistent ethic of life prevented hundreds of Catholic prosecutors from supporting the death penalty — even seeking it as often as possible. At one point the church threatened to withhold communion from Catholic politicians who supported keeping abortion legal, but they always had a much more indulgent attitude towards the Catholic prosecutors filling up Death Row.
I don’t say this to deflate people’s hopes, and still less to run down the Church — just to emphasize we will have to be energetic and creative in order to take advantage of this opening.
Personally, I can’t wait. If we can get this material in video form online or on DVD, as well as in print, it would open a lot of doors!
only one use I find for the idea of being in recovery … there is a necessary bond between those of us who have “been there” and can share certain experiences and challenges that it is sometimes a risky business to share with those who have not.
But oh, what a devil’s dictionary we could write of perfectly good words that have become Newspeak glop! Recovery. Holistic. Advocacy (being paid to represent someone you don’t know and who never elected you their representative). Resilience (a concept eagerly embraced by the military to prove to soldiers that PTSD is their fault!) Empowerment (making people come up with ways to work harder and eliminate their own job). Restorative justice (in which cops pretend to be social workers) and accountability (in which social workers pretend to be cops).
I have been in and out of psychotherapy perhaps a dozen times in thirty years, and each time I quit I immediately felt better, at least for a little while. Even in cases where the therapist was a good person whom I did not resent in any way! Thank you for helping me figure out exactly why that is. It’s the joy of just disappearing into the crowd.
Well … there is no sin in KNOWING some neuroscience. There are cognitive and emotional problems that are definitely physical and you do people a disservice if you keep telling them they can “learn” to overcome them. Serious head injuries are one example; then there’s Alzheimer’s, syphilis, and drug withdrawal syndromes from both street drugs and prescription drugs.
This does not automatically mean you offer a drug as the solution. It depends on whether there is a drug whose benefits trump its risks. But there was a time when professionals told Parkinson’s disease and even rheumatoid arthritis patients that their disease was largely psychological. A disservice just as great as telling someone her fears are a biological “Generalized Anxiety Disorder.”
But you are right about the priority we put on neuroscience and the conclusions we draw! One of my favorite studies was done thirty years ago at UCLA on primate social behavior. The boss of each monkey clan — the “alpha male” — had higher serotonin levels than all the others. But when the Boss Monkey was separated from the pack, his serotonin went down, some other male stepped in to fill the leadership void, and THAT monkey’s serotonin went up!
High serotonin in the “alphas” was associated with confidence and a lack of impulsive aggression — but it was their situation that brought it on. They didn’t find out the biological basis of “leadership” as some had thought. All they discovered was that it was good to be king, I guess.
As a matter of fact Enbrel, Humira and other TNF-A blockers carry a warning that they may cause lymphomas, especially in kids. There’s some basis to fear they promote tumor growth in general. And they definitely increase your risk of tuberculosis and other fungal and bacterial infections you would not pick up if your immune system was not being suppressed.
So these are not drugs to play around with. Of course, since they’re so lucrative, drug cos are trying to promote them for ever less drastic conditions.
I don’t know what to make of the association between these “inflammatory markers” and depression or other mental distress. It could be that inflammation causes depression; it could be that external stressors, and our responses to them, cause both inflammation and depression.
But I am pretty sure of one thing: We need to be VERY skeptical of the concept of “treatment resistant depression” as a separate and more serious condition — especially when “TRD” is defined as a failure to respond to SSRI’s. For many years people who do not obtain relief from SSRI’s have been told they have this unusual and much more serious condition called “TRD.” It’s been used to induce compliance with ever more punishing chemical regimens, or ECT, assumed to be needed to counteract this terrible disease of “TRD.” It’s demoralizing, disempowering — and most importantly, there’s no basis for it.
In fact “failure to respond” to SSRI’s is extremely common; as Irving Kirsch pointed out, in a typical trial 50% feel better on SSRI’s — and 40% feel better on placebo. This supports the conclusion that as few as 10% may be having a genuine meaningful positive response to SSRI’s. And here’s one thing the doctors all know, but very few will admit: people who feel much better after a month on SSRI’s are far more likely to suffer from anxiety than depression.
There are some efforts underway to test TNF-Alpha blockers — incredibly expensive and toxic drugs like Enbrel — based on this theory of “inflammatory TRD.” Let’s be careful about accepting the existence of a disease defined by failure to respond to some company’s pet drug. When I failed to lose weight on the South Beach Diet, I didn’t say OMG, I have South Beach Resistant Obesity! I just decided South Beach wasn’t the miracle it was cracked up to be, and lost a bit of weight some other way. Ain’t exactly skinny yet, but still trying (g).
— Jeffrey C, what is the very alarming bill you mention?
As for CNS Response Inc., I think the hype is way, way ahead of the science. They also follow a long line of “research” that refuses to consider any intrinsic problem with the drugs, and focuses on finding the “exceptional” patient who cannot handle them. A few years ago it was all about finding the “hidden bipolars” who were having problems on antidepressants — whether cycling into manic or violent behavior, or simply staying depressed. Now it’s about doing expensive brain scans, etc. to try and spot which antidepressant type each patient will respond to.
If military suicides are spiking in part due to psych drugs, CNS Response will not help us find it out. Instead they will push the idea that there is a “right drug” for each soldier and we just have to find it. Business Week compares it to a dating service:
“The CNS system works sort of like a dating service — only instead of pairing personalities, it matches electrical activity that’s recorded in the brain.
“If a number of people with similar brain waves do well on the same medicine, then that drug will probably work for the new patient as well, CNS’s Carpenter said in an interview. The Aliso Viejo, California-based company has a database of about 8,700 people that new patients can be compared with, he said. “
Sorry to hear of the loss of your friend, John. A strange, sad way to start the new year. I hope her friends can get together to remember her and help each other through it.
Really looking forward to your columns, David! A brief discussion about suicide broke out here a few months ago, in response to the article about two men alleged to have killed their children in a temporary psychotic state brought on by antidepressants.
If they were really remorseful, would they not have committed suicide, some wondered? Or at least tried? It brought home for me that what a society really thinks about your life and your death can have a huge impact on how you react to these impulses. Even suicides brought on by SSRI’s (probably the most biological there are) are probably not only 100.00% chemical. And people who have been there can help figure this out.
Well done Chris. I almost forgot how terrifying it can be when you are taken into custody “for your own safety.” I remember how the private hospital I was in would handle those who ran out their insurance policy’s allotment of days and were still not quite “safe” to discharge. A van would show up from the state hospital and handcuff the person, strap them down and take them on a body board over to Madden or Elgin State. Mostly they had been somewhat anxious but in pretty decent spirits the day before, and mostly by that time they were weeping hysterically, and the rest of us were shaken up pretty good as well. Oh, the art of healing.
As far as whether there’s an actual disease entity called schizophrenia, I can’t say for sure. Don’t know enough. Important subject. Look forward to learning more.
But I do know this: What we have in this column is a STORY. A damn valuable story, because it brings out solid information about what happened to people with those sorts of problems, who today would be called schizophrenic, 100 years ago. BEFORE any of today’s medications were even thought of. And the answer turns out to be that they were TEN TIMES MORE LIKELY to be ALIVE a year after seeing the doctor, than the same types of people with the same types of problems, are today. And the main difference is that those people did not commit suicide in the numbers that people labeled schizophrenic do today. Which means the modern so-called miracle drugs may be CAUSING most of the suicides.
Now, a story like that is what you call ammunition. People are always being told that the disease causes suicide, and the meds prevent violence, and every “schizophrenia”-related tragedy you hear of, like Jared Loughner’s killing spree could be prevented if only we could give all “those people” a great whacking Haldol or Seroquel injection for their own good. And along comes a guy with some solid evidence that says the official story just can’t be true.
I believe I would listen to a story like that even if it came from a drug sales rep or a TV evangelist. As long as the guy had the facts to back it up. To listen to a dissident doctor who might in your opinion concede too much to the medical model, but who’s stuck his neck way out to alert people to the hazards of these drugs? Shouldn’t be impossible.
There’s a whole world out there of people we need to convince. To do it we need evidence like this. A lot of the people who can bring out the evidence are not going to be people you regard as total kindred spirits. But if we only talk to total kindred spirits, we’ll never get anywhere.
As for columns that are double-posted, both on MIA and on the writer’s own blog, I kind of like the one-stop surfing … wish we had more of my favorite mental health blogs reposted here. I think Ivana is right though, most such bloggers won’t be able to keep up with the comments on their own blog and MIA all the time.
I guess the alternative would be to ask those bloggers to pick just one or two a month to post on MIA, and be sure to cruise over and comment on the comments. Or else ask them to provide a hyperlink to the home blog so people with something to tell the author could easily link over.
Well put, Wileywitch. Certainly not EVERYONE who claims a drug caused them to commit a violent act is telling the truth, and because this Carmichael has given multiple explanations for killing his son he deserves some extra scrutiny.
But I fail to see how we can accept the idea that these drugs might inspire suicidal acts (lethal violence against self) without being capable of inspiring homicidal acts (lethal violence against others). Particularly when the violence, as in David Crespi’s case, is sudden, short-lived and followed by immediately turning oneself in. I think the awful impulsive character of these acts is one reason why murder-suicides figure so prominently among the violent acts alleged to be caused by SSRI’s. Immediate horror at what one has just done is one credible explanation. In addition to completely out-of-character acts, there are also crimes triggered when a drug prompts you to act on violent impulses that you would ordinarily be able to suppress. Few of us could say we have never in our lives entertained any violent thoughts, even if only fantasies.
I was a prison visitor for several years on Illinois’ Death Row, and got the chance to get to know a variety of murderers. As near as I can tell, they are not a separate species from the rest of us. Some were very remorseful, some less so. A few I would have welcomed as neighbors; a few I thought should only leave prison feet first; most were somewhere in between. I certainly heard about murders that would probably not have taken place without the influence of cocaine, PCP or alcohol. At least the men who drank or did coke knew they were taking intoxicants that could lead to trouble. Most takers of SSRI’s have no such warning.
Finally — if I committed murder would I “have” to commit suicide, and does that show what a good person I am? I think not. I understand the thought but I do not think we should EVER see suicide as an obligation, a way to pay your debt to society or restore your reputation. Too many of us live with some degree of shame that we “never had the guts” to commit suicide and I for one have decided that I will throw that notion out the window. The simple urge to keep on living is never a sign of weakness or a superficial or amoral nature. It is a sign of life and strength. Period.
One of the scariest aspects of this story is the widespread prescribing of Cymbalta by GPs, orthopedic surgeons, pain docs etc. for muscle and joint pain. In most cases these people are told nothing at all about its psychological effects and are not even aware that they’re taking an antidepressant. (In most cases it does very little good for their back, neck or knee pain either).
It’s very close to being an uncontrolled experiment — of the type that would still be shut down by any hospital ethics ctte if you proposed it honestly — “Why don’t we give antidepressants to a bunch of people who are not depressed, and NOT EVEN TELL THEM?” If we can’t stop the experiment at least I hope someone can gather the facts and help us learn the lessons for next time.