Posts tagged ‘Schizophrenia’

FDA May Require Testing of Electroconvulsive “Therapy” Devices

You may remember a couple of posts I made last year at this time about the importance of speaking up when the FDA opened itself up to comments on the issue of reclassifying the as yet untested ECT (shock treatment) machines from a class III to a class II. The situation was simple — in all the years the machines have been in use, the industry has never had to prove that they are either safe or effective. For decades people have been having their frontal lobes assaulted by electricity in varying amounts from just plain dangerous to thoroughly destructive on machines with no standard of testing to ensure that they’re working as designed, much less designed to address any established clinical use at all. This is not only frightening but a terrible insult to the rights and safety of the approximately 100,000 people who face ECT each year in the US (by choice or force) and only serves those profiting from the shock industry. In essence, the hundreds of thousands of people who have undergone this so-called treatment are the experiment — the living test.

Well, the good news is that it seems that the FDA’s protection of the shock industry may be coming to an end…

Peter Breggin, MD for the Huffington Post:

Friday afternoon, January 28, 2011: The FDA’s panel for electroconvulsive therapy (ECT) voted to place ECT machines in Category III for all but one indication. If the FDA accepts the panel’s recommendation, the agency will require testing for all uses except “catatonia” which was recommended for Category II, requiring less stringent testing.

A tiebreaker by the chair was needed to propose putting ECT machines into Category III for depression. Given acute trauma caused by the treatment and the evidence for long-term memory and cognitive problems, it reflects poorly on the panel that the vote was so close.

Indeed. Despite the polarized response to the matter from proponents and opponents of giving ECT a pass, each side claiming history has proven their point, the fact of the matter is that the FDA is supposed to be ensuring our expectation of some level of safety. If an industry is unwilling or unable (or in this case both) to prove its product safe and effective given the established (and frankly, lax) channels, then that product has no business being passed off as a reasonable course of action in our nation’s hospitals. This shouldn’t have come off as a vote on ECT’s supposed merits but on its decades-long exemption from the system — and that shouldn’t be a close vote at all.

It’s a little early to cry victory as it remains to be seen whether the FDA will follow the panel’s recommendation, what result that will actually have and how much the overlapping psychiatric and shock industries will play off of the catatonia exemption.

If the diagnosis of catatonia is given this loophole, we will see more and more people diagnosed with this disorder…It’s similar to what happened to children: massively increasing the diagnosis of bipolar disorder to justify giving them adult mood stabilizers and antipsychotic drugs.

Unfortunately, the FDA is already waffling about whether or not it will in fact require the usual testing for Category III devices. In response to questions at the hearing, the agency staff said it was not certain whether a Category III designation for ECT would require the same rigorous testing routinely carried out for safety and efficacy. No one on the panel seemed to think the treatment should be phased out until safety and efficacy were proven.

Psychiatric reform moves ahead a step at a time, falters, and hopefully moves ahead again. The classification of ECT into Category III for most conditions, which at this point is only a recommendation, is a step forward and a somewhat positive sign to those of us who have called for this for decades. We hope the FDA will uphold its obligation to the public to thoroughly test such a dangerous device for safety and efficacy.

Since the psychiatric and shock industries have essentially shaken off the burden of responsibility for the safety of the consumer (certainly at the industry level the term is more fitting than patient) and the FDA is apparently questioning its convictions about the protection of the public, the burden rests on the people. As neither of those entities are wholeheartedly committed to moving forward of their own accord to ensure the safety and the efficacy of products on the market and ECT cannot prove itself under any honest scrutiny, the burden then falls on the people to pressure them toward forward momentum and to keep the scrutiny honest…but then, has there ever been a time when that wasn’t the case?

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January 31, 2011 at 11:01 am 6 comments

Free John (Psychiatric Prisoner)…Action Requested: via Beyond Meds

Sometimes blogs like this give us the opportunity to do much more than offer up snapshots from  our fairly ordinary lives or our opinions on the state of the world around us. Just as with every word we speak out in the real world, we have a multitude of opportunities to say something that matters. When someone’s words offer us a chance to become a part of the solution, those words become an action whether in speech, on paper or in the glow of our screens — and that is why I so often visit and repost from Gianna Kali’s Beyond Meds.

The following is lifted entirely from Beyond Meds. These are Gianna’s words not mine. I say that to give credit, not to separate myself from it as there is nothing in the post that I do not fully endorse. That’s why it’s here.

John Hunt is a trauma survivor with a diagnosis of ‘paranoid schizophrenia’. He has spent over four years locked up in Carraig Mor psychiatric treatment centre in Cork city, Ireland.

He has been over-medicated on an array of psychotropic medications with dangerous adverse effects. He has had tardive dyskinesia, akathasia and has developed incontinence. His physical/ mental/ emotional/ spiritual health has been severely neglected and has deteriorated since being in Carraig Mor.

He has had no access to a rehabilitation team or psychotherapist and no day release in two years. There are no plans to rehabilitate John and return him to the community where he belongs. He is merely maintained and contained. John and his family have no voice in relation to his future. We are afraid that John’s physical health is being damaged considerably. We cannot stand by and watch this happen any longer.

Sign the petition to free John Please take action here.

Facebook cause: The incarceration of John

The blog: The incarceration of John

Check back later for more links. Grainne is being swamped with calls from reporters today, but she will update me with more links when she is able. Please look a the other work Grainne has done for this blog as it’s extremely inspiring and will also shed more light on what is happening to John.

June 21, 2010 at 9:14 pm

Kings County and the Death of Esmin Green: Still Outraged

Some time around 6:30 am, two years ago today, Esmin Green was involuntarily admitted to Kings County’s psychiatric ER where she was ignored for 24 hours, the last of which she spent face down on the floor — writhing at first and ultimately dying in the presence of  the staff members whose job it was to care for her.

Think about that as you glance at the clock, going about your day today — how far 6:30 in the morning seems from your lunch, the end of the workday, prime time television. Think about where you’ve spent your day and how it compares to where Esmin was all that time just two years ago.

I’m still outrageed, still disgusted that we live in a society that allows that and — as long as it’s just those mentally ill over there — accepts it. We’ve created a line and carefully keep who and what lies on the other side out of our sight –as if there really is an us and a them. There isn’t. As long as we have a class of people who can be treated by force we have a public that cares little about what happens to them behind closed doors but there is no class and public. There’s just us and what we do to others, we’re doing to one of our own.

The only real rarity in this story is that it was caught on video. If it hadn’t been you would never have known about it. It would just be another death in another psych hospital — with no one to cry foul. KCHC has been operating like this for decades and even now, in their costly new building, under federal monitoring and with new accountability policies in place — the abuses continue.

I’m going to Brooklyn today — to King’s County. I’m going in remembrance of Esmin Green and in protest of an institution beyond reform. I’m going to stand aside others who won’t accept the state of the system and are standing up in the streets, demanding change — and when I glance at the time, I’ll know I’m where I need to be. Will you?

Previous Related Posts:

Esmin Green Demonstration and Vigil (2009)

Kings County Hosital to be Monitored by Federal Judge

Sexual Assault by Kings County Employee

Kings County: A Call to Action

June 18, 2010 at 10:46 am

Kendra’s Law — Five More Years?

Kendra’s Law, a controversial New York state law enacted in 1999 under the Mental Hygiene Law, is due to sunset in June. If you hear about it from both sides enough, it’s easy to overcomplicate things and muddy the waters but what it really comes down to is that Kendra’s Law enables the state to drug people who they think might become criminals. Kendra’s law is in place solely to allow the forced treatment of people deemed mentally ill using fear of violence, however unfounded, as its leverage. It enables the state to strip people of their rights based on a diagnosis. Last I knew, the constitution (at least on paper) applied to all of us and not just those the state deems mentally qualified to share in the rights it’s meant to guarantee. That is a very scary path to be on and make no mistake — we are on it.

While its future is unclear, Kendra’s Law might very well be extended for another five years but not without a fight from a grassroots organization (no, not that one — a real grassroots organization) formed to protect the rights of people regarded as mentally ill — We The People. I, for one, hope they are able to help turn things around. They’ve been making their presence and stance as advocates for rights in mental health known and are taking part in meetings with Assemblyman Felix Ortiz in an effort to help restore the rights and dignity of New Yorkers.

From the Legislative Gazette:

Bill opponents, such as We The People, a group describing themselves as survivors of psychiatric atrocities in the mental health system, said this bill would extend the reach of the law to further encroach upon the civil rights of those from lower socioeconomic backgrounds unfairly labeled as “mentally ill.” Especially, they said, because it removes a provision that requires a physician to testify at the court hearing.

We The People want another woman to be remembered besides Kendra — Esmin Elizabeth Green, a mother of six who suffered from depression. She collapsed on the waiting room floor of the psychiatric ward in Kings County Hospital Center in June 2008. She died soon after, unattended and unnoticed by hospital staff.

This incident is just one example of the mistreatment of the mentally ill, law opponents say, because the assisted outpatient treatment system amounts to coercion, oppression and “torture.”

I’m not sure why the author felt the need to put torture in quotes. It reads like undue editorializing to me — as if to say it’s a stretch to call it torture. There’s a reason there’s a survivor movement and it’s not because the system has a healthy way of dishing out a healthy version of care. These drugs wreak havoc on your body, alter your mind and take you over in so many instances and in so many ways.Of course, once you become someone for whom force is considered an option, these things are just details, secondary to your being kept under control. Force does something sinister that rights and law can’t quite touch. Where you were once a person worthy of care, you become a problem to be solved.

Lauren Tenney, a coordinator of We The People, said, “They designed this [assisted outpatient treatment] to make it sound nicer. It was designed to fool the public to make people think it stops people from killing people, but they’re just getting drugs and no support. The research is entirely flawed.”

AOT should be referred to as IOC, she said, involuntary outpatient commitment.

She said the law is coercive and denies people their civil rights because it forces people into taking psychotropic drugs without their consent and does not provide the proper therapeutic support.

“I’ve seen people tortured and dead from their medication,” said Tenney.

If you have something to say, sign on to add your name and voice to the action We the People are taking. Contact Assemblyman Ortiz directly. Time is limited. Do you really want the kind of guy who wants to ban salt in restaurants making decisions regarding your mental health rights? Probably not, but that’s the situation. Don’t let it happen while you sit quietly. If you think you’re out of reach because you don’t live in NY, think again. Forced treatment laws are being introduced or strengthened all over. This is not just an issue of mental health rights but basic human rights and civil liberties. Drugging to prevent crime? That’s one step too far and a decade too long.

May 7, 2010 at 9:41 am 1 comment

The Devil and Entertainment

It’s been an interesting couple of weeks for fans and admirers of indie music icon, Daniel Johnston. He recently commented on the documentary of his life and music, The Devil and Daniel Johnston. While I had already developed an interest in Daniel’s work and his story — which are inseparable — aside from the documentary, I had little to go on and it certainly gives you a strongly focused view of his life. Unfortunately, it may have been narrowly focused as well. The film has been criticized as being unbalanced in its portrayal of him as an always tormented, sometimes institutionalized semi-genius scratching out recordings in garages and basements while battling some pretty strong demons, namely bipolar disorder for which he was institutionalized. That’s not to say all of those things aren’t true, just that they’re not all of the truth.

If The Devil and Daniel Johnston is your only glimpse at his story, you’re likely to take away only one view of him. In hindsight it becomes a little clearer that in the film he was defined by several lapses in mental health while less interesting little details such as long stretches of productive wellness were downplayed like long straight interstate roads to more interesting breakdowns. To be fair, things like the incoherent rambling, sometimes violent outbursts and the plane crashed he caused could distract most people from music. It was a great film in many ways with a lot of tenderness and a good glimpse of his vision but you have to bring your own sense of balance to it. Be careful though, it might break your heart.

From BBC 6 Music:

“It wasn’t really fair because it really talked about the worst experiences of my life,” Johnston said. “I wish they had included more music instead of making it one of those Stranger Than Fiction shows.”

So, onto the music. Since one of his most characterizing breakdowns, he’s been hard at work — writing and releasing albums like he’s sending out pages from a journal — including one of my favorites, Fear Yourself. All of his albums are packed full of strange but endearing lyrics in that lo-fi recording so many people have come to know and love (or hate). One thing is certain — after all these years, regardless of the state of his mental health at any point, his songs are extremely exposing and honest which is refreshing among a sea of John Mayers pretending to feel something because it sells records housewives and teenaged girls.

His website refers to him as a”pilgrim of indie music with 30+ albums, hundreds of songs, and dozens of fans.” In fairness, that was written before the success of the documentary propelled him into the center stage spotlight. He’s now got countless fans, and devoted ones at that. All that notoriety and demand has led to well attended and often sold-out shows around the world and dramatically increased prices on his original artwork. This has finally allowed him to live off of his creations — products of the very mindset that have made things so difficult for him and often the people around him.

“It’s really cool that I’m making a living after all these years. I’m doing a lot better than I’ve ever done…I was starving to death working for McDonalds when I first got on MTV.”

He’s been working with a fervor but not just for its own sake or simply to meet an increased demand. Pouring his energy into creative outlets and always looking for his next opportunity appear to serve a distinct purpose in Daniel’s life. Given the limited options the world allows for someone with his extreme and changing states of mind, he may be left with little choice.

“I’d like to direct my own movies. I’m working on a film of my own and I want to direct it all myself,” he said. “[I’m planning] a variety show, with songs, videos and comedy skits all together.”
“I’ll do anything to stay out of hospitals, I spent five years in mental hospitals. All I can do is try again.”

For his latest project, Johnston released an album last week entitled Beam Me Up, consisting of three previously unreleased solo tracks and rerecorded versions of familiar Johnston originals (including Syrup of Tears, Devil Town and Walking the Cow) all backed by the eleven piece Dutch orchestra Beam. The fact that he’s released an album in march, having just released one in october speaks to his constant writing and recording. For him, it’s like breathing. I’ve heard a few short samples but have yet to get the album. So far it sounds like fans will love it and most of the rest of the world will wonder what the hell is going on and why anyone would buy it, which is something I’ve always liked about his music. It’s certainly not aimed at appealing to the broader tastes.

As if that wasn’t enough, filmmaker David Miller is working on a movie, an “epic superhero story,” about Daniel johnston — and the role of our hero may be played by Philip Seymour Hoffman, one of the few current actors worthy of the  praise he gets with his wide ranging roles as an indie/offbeat actor. From The Guardian:

“It doesn’t really cover any of the same stuff as The Devil and Daniel Johnston documentary,” …. The director, who is in the midst of pre-production, finishing the screenplay and approaching possible actors, added: “There’s so many people reaching out that are huge Daniel Johnston fans. Philip Seymour Hoffman and John C Reilly for example. Johnny Depp’s a big Daniel Johnston fan, though we’d like him to play the older brother.”

I’m curious to see what it does cover. Yes, his life is full of stories worth telling but they are not all about missteps and failures and they’re not all about his mental health, whatever that means. Maybe this one will tell his story with a little more of the fairness he might hope for. If nothing else, it will be interesting to see Daniel Johnston portrayed in a hero’s light. As anyone familiar with his life and work knows, Daniel Johnston loves a hero.

April 7, 2010 at 9:58 am

Calling Mom? Take Drugs.

Now that we’re getting all too comfortable taking antipsychotics for almost every perceived illness under the sun, from ADHD to depression and bipolar disorder, what does pharma offer for everyday concerns like…calling your mother? This ad for AstraZeneca’s Seroquel represents a new low in irresponsible attempts at positioning antipsychotics as a happy pill for every problem, feared problem and now even non-problem.

Oh and in case you missed it, the word schizophrenia is in muted type in the corner — snuck in just so they’re not technically marketing off label. That’s what it’s come to, just tack the name of the approved indication on the ad somewhere and sell a drug as the cure for daily life. If this is the shape of pharma marketing to come, what’s next?

As if it’s not bad enough to push the idea of using some of the most dangerous drugs on the market to cope with daily tasks and concerns, they’ve abandoned the idea of even pretending to condone judicious dosing and chosen instead to encourage buyers to take it to the limit. There is a reason the boldest type on the ad says “Up to 800 mg” and the arrow on the chart is maxed out. Even beer commercials tell you to drink responsibly, while this ad just tells you to take more. But hey, when it comes to Seroquel dosing, their slogan says it all, Aim High. If there was ever a line regarding responsible drug marketing, they’ve crossed it.

I was clued into this little gem by a BNET article via Beyond Meds.

March 24, 2010 at 8:01 pm 6 comments

Violence Prevention Medication?

This morning, I stumbled upon an opinion piece for the Buffalo News pushing for Kendra’s Law to be made permanent. Kendra’s Law is an attempt to prevent violent crime by essentially treating people diagnosed as mentally ill like some sort of pre-criminals. On paper it’s also supposed to be for the safety of the “patient” too but when it’s time to push for support, it’s almost always about protecting “us” from “them.” (As I’ve said before, fear sells when facts fail.) Advocates of Kendra’s Law and similar attempts to criminalize extreme states of mind use phrases like assisted outpatient treatment (AOT) instead of the more truthful involuntary or forced outpatient treatment.  These are the types of laws that allow for forced drugging, electroshock and hospital confinement — all based on the unfounded idea of biological mental illness but the idea is just the packaging. It’s essentially a way to keep people under control out of fear of what they might do. This thinking has no basis in fact regarding mental illness and certainly no place in the arena of human rights or a constitutional America. The article is a fine example of fearmongering but that’s the current state of media. Somehow factmongering never caught on.

As with most battles for thought and opinion, this one is very much centered on carefully crafted words and phrases — not unlike much of the current mental health industry. As with force being rephrased as assistance, drugs are renamed and recategorized, some officially and some in the minds and words of the public. (Neuroleptics have come to be called antipsychotics which are now being called antidepressants.) Sometimes words with no previous connection are paired and when spoken with some authority or when used to speak to people’s fear these words become inseparable, creating a false choice scenario. The latest I’ve seen, in the aforementioned article, is “violence prevention medication.” Of course, there is no such thing but it’s another step in grooming the vernacular.

Kendra’s Law—designed to keep people who really need it on their violence-prevention medication—was passed about 10 years ago. It’s up for renewal, again. Just make it permanent…

The law allows judges to order certain mentally ill people to remain on violence-prevention medication as a condition of release and, if that doesn’t work, to order involuntary committal to mental hospitals if shown to be a danger to themselves or others.

The author creates a connection between violence prevention and drugs. Simply by accepting the phrasing, you’d be accept the idea as truth. And if that’s the truth, you are either in favor of forced drugging or you don’t care if innocent children are slaughtered at the hands of madmen. Facts be damned, that’s your choice. Somehow, when I picture people being tackled to the ground, restrained by undue force, faces pressed against a cold hospital floor and forcibly injected with drugs — powerful mind and body altering drugs — it’s hard to see it as “violence prevention.” We are transferring violence at best and at worst and in truth, causing it.

March 17, 2010 at 7:42 pm

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