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A call for survivor stories from Paula Caplan 03/16/2012

Posted by ALT in DSM-5, Survivor Voices.
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I received a request from Paula Caplan today calling for psychiatric survivor stories.  I promised to post it here [see below].  Paula is one of the most vocal critics of the forthcoming DSM-5, and she will be speaking in Philadelphia on May 5th as part of the “Occupy the APA” festivities.  Your survivor stories will be an extremely important contribution to the cause of telling the American Psychiatric Association to stop labeling, dehumanizing, and condemning human beings who happen to experience things differently.  If you have a story to share, please consider doing so!

***

(from Paula Caplan)

Paula J. Caplan, author of They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal, would like to receive one-page (yes, just one page, please) brief summaries — even bullet points will be fine — from people who have been harmed in any way by psychiatric diagnosis. These are to post on her psychdiagnosis.net website, where she has had 53 stories of harm but wants more recent ones. The writer will have the choice of having their real name, a pseudonym, initials only, or “anonymous” used when their story is posted. The one page should consist of the following information:

(1)Psychiatric label(s) I was given

(2)What was happening that seems to be why they gave me the label(s)

(3)The kinds of harm I suffered because of getting the label(s)

Please send by March 23 to paulacaplan@gmail.com

DSM-5 conflicts of interest hit mainstream media; protestors rally, but is it for the right reasons? 03/14/2012

Posted by ALT in DSM-5, Mental Health Policy and Inititatives, Patient Rights and Advocacy.
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I’m no journalist.

I did write for my high school newspaper (I can recall a particularly riveting article about different styles of shoes!), but these days I’m strictly a blogger, cavalierly inserting humor, my own biased opinion, and all manner of distractions and sidetracks into my “articles.” 

Nevertheless, this ABC news article from yesterday (“DSM-5 Under Fire for Financial Conflicts of Interest”) follows the exact argument I put forward in my little piece entitled “For the DSM-5 Task Force, Being Greasy Never Been So Easy!”  Whoa, did I inadvertently produce some journalism here?

I have to admit, I liked my title better.

Ok, ALT; stop patting yourself on the back!

Done.  Now let’s dig in.

The ABC story was fueled by the publication of an academic analysis of the conflicts of interest of the various DSM-5 committees, conducted by the same researcher (Lisa Cosgrove) who published a similar analysis in the days of DSM-IV development. 

As I wrote awhile ago, it’s practically a conflict-of-interest OLYMPICS!  Cosgrove found that about ¾ of the work groups have a majority of members with major ties to the pharmaceutical industry.  Some standout groups include:

- Mood Disorders Group: 67% of members report ties to industry

- Psychotic Disorders: 83%

- Sleep/Wake Disorders: 100%

Moreover, when comparing the figures from the DSM-5 to her previous analysis of the DSM-IV workgroups, Cosgrove has found that in about half the work groups, conflicts of interests have only gotten worse.  

Check it:

[click to enlarge]

It appears that the APA thought transparency alone would be a solution to their metastisizing “conflict of interest” problem. 

Well, they’re wrong.  We can clearly see the giant, throbbing tumor now, but the fact is it’s still there.

The whole point of disclosing conflicts of interest is determining whether someone is unencumbered enough to participate in a decision-making/fact-finding process.  For this to be in any way legitimate, there must be some threshold where the person’s conflicts of interest are too great, where they are removed from the process. But the APA apparently has no limit. 

Oh, sure, they say something about “no more than $10,000/year directly from the pharmaceutical industry and no more than $50,000 in pharma stock options” … but with major gaps in their disclosure policy and no dollar amounts made public, how can we be sure this is any less of an empty gesture than the rest of their carefully choreographed “transparency” dance?

DSM detractors say the darndest things…

A wave of protest against the DSM has been building over the past few months, but I’m not sure that I’ll be able to unite with the mainstream (or “middle way”) DSM protesters.  Here’s why:

Middle way protestors are against the DSM-5 in particular, criticizing the development process, the addition of so-called “unscientific diagnoses,” financial conflicts of interest of the developers, etc. 

The idea being that we simply need a better process for creating this thing.  And that the botched development of the DSM-5, which will result in flaws that could’ve been avoided with more rigorous procedures, is a risky business because it might turn the tide of public opinion against the very institution of the DSM; which would be terrible because we need some kind of DSM in order to treat mental illness at all.  The DSM detractors quoted in this article all seem to fall into that camp; Allen Frances, David Elkins, and Cosgrove herself. 

But there’s another camp, which I and many others belong to.  Instead of being against the DSM-5 in particular, we’re against the institution of the DSM, period. Instead of arguing that the DSM-5 is marginalizing, stigmatizing, unscientific, we argue that the practice of diagnosing people itself is all of these things and worst of all… dehumanizing! 

In ABC’s coverage, only the “middle way” DSM detractors are represented.  And I find myself feeling a little piqued by what they have to say.  For example:

Dr. Allen Frances, who chaired the revisions committee for DSM-4, said the new additions would “radically and recklessly” expand the boundaries of psychiatry.

“They’re at the boundary of normality,” said Frances, who is professor emeritus of psychiatry at Duke University. “And these days, most diagnostic decisions are not made by psychiatrists trained to distinguish between the two [normality and mental illness, presumably]…”

- From ABC News article “DSM-5 Under Fire for Financial Conflicts of Interest

The boundary of normality?  He speaks as if he knows exactly where that is!  And that the DSM-IV catalogs “diseases” that fall well beyond it.

I beg to differ.

Take so-called “schizophrenia,” or psychosis, for example.  As John Perry so nicely puts it:

In my opinion, the real pathology in psychosis does not reside in the “mental content,” the images and the symbolic sequences.  All of that appears to be a natural psychic process, present and working in all of us.  This is normal madness, so to speak.  The schizophrenic “disorder” lies rather in the ego, which suffers from a constricted consciousness… The problem of the prepsychotic state is how to discover the impassioned life, and nature has its own answer in the form of a turbulent ordeal, a trial by immersion in the source of the passions – that is, a psychosis.

- John Perry, in The Far Side of Madness

[If you liked that quote and have some time on your hands, read this!]

From Perry’s point of view, psychosis is often a naturally transformative and healing process, somewhat like childbirth.  If there is such a thing as a “boundary of normality” (which I doubt), it falls well within it.  Psychosis is the “normal” response of a psyche needing to heal.

Here’s another rather disturbing quote from the middle camp:

“My best hope would be for the APA to respond in a substantive way to the concerns we’ve raised.  They have an opportunity here to make a correction that would give the appearance, if not the reality of developing a diagnostic instrument that’s objective and has integrity.”

- Lisa Cosgrove, in the ABC News article DSM-5 Under Fire for Financial Conflicts of Interest; emphasis added

A semblance of objectivity and integrity – not necessarily the real thing – is her best hope for the DSM committee??

And our best hope for dessert is a big slice of "pretend pie"!

Way to aim high!

A question

Should all the DSM-V detractors put aside their differences and join together to protest the DSM-V, or are the two camps far enough apart that their protests really can’t align?

As you ponder, consider this: a large DSM-5 protest (Occupy the APA) is planned for May 5th in Philadelphia at the site of the APA convention.  The middle way camp will necessarily be inside the convention (most of them belong to the APA, after all), while the rest of us will be standing outside, barred from entry.

It appears that more than mere distance separates our two camps.

A uterus travelled to Le Roy — hysteria makes a comeback 03/12/2012

Posted by ALT in Children's Mental Health.
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Hysteria.   

In Greek it literally means “travelling womb,” because that’s what the Ancients thought caused all manner of feminine problems the label referred to — an errant uterus “floating” around inside the body, creating disturbances, taking up space.

"Ummm... uterus? You're hogging the couch."

 More recently, hysteria is (or once was) a medical term used to describe an overwhelming array of symptoms (including twitching, seizures, fainting, partial paralysis) experienced mostly by women, which are generally understood to be psychosomatic. 

It’s all in your head.

This label was the genesis of Freud’s psychoanalytic approach, and he originally got the idea from his teacher, the neurologist Jean Martin Charcot.  Charcot believed that many of his twitching, contorted patients suffered, not from any physical pathology, but from a traumatic psychological event which caused them to manifest psychosomatic symptoms.  It was unconscious symptom formation, or as Freud would term it, “repression.” 

There was a serious problem with all of this, however; every case listed by Charcot as an example of his theory would be understood today as a case of brain damage or epilepsy, not so-called “hysteria.” 

From this excellent essay on the history of “hysteria” by Robert Webster:

Many subtle neurological disorders, such as temporal lobe epilepsy, and frontal-lobe epilepsy, were unrecognised in Charcot’s day. At the same time, the internal pathology of head injuries remained an almost complete mystery. Closed head injuries, which produce concussion without leaving any external injury, were simply not recognised…

Arc-de-cercle, drawn by Gilles de la Tourette in his study of hysteria.

When Charcot was confronted by patients who adopted the arc-de-cercle position by compulsively arching themselves backwards, he was not to know that this posture (which is sometimes combined with rhythmic pelvic thrusting) was a characteristic manifestation of frontal lobe epilepsy. In fact this form of epilepsy would not be fully described until another hundred years had passed. Even temporal lobe epilepsy, with its bizarre hysterical-seeming symptoms, was not recognised until the 1930s or 1940s. Confronted by the symptoms of these medically uncharted conditions, Charcot had little option but to place them in the catch-all diagnostic category of an illness – ‘hysteria’ – for whose existence no reliable clinical evidence has ever been produced…

What made the resulting labyrinth of medical error all but inescapable was that practically every other physician had become lost within it. Over and over again, highly trained medical practitioners, confronted by some of the more subtle symptoms of epilepsy, head injury, cerebral tumours, multiple sclerosis, Parkinson’s disease, Tourette’s syndrome, autism, syphilis, encephalitis, torsion dystonia, viral hepatitis, reflux oesophagitis, hiatus hernia and hundreds of other common or uncommon conditions, would resolve their diagnostic uncertainty by enlarging the category of hysteria yet further. As a result medical misconceptions which sprang from one misdiagnosis would almost inevitably receive support, and apparent confirmation, from misdiagnoses made by other physicians. 

As you can see, “hysteria” essentially functioned as a catch-all diagnostic category when doctors were at a loss to explain symptoms [much like a few “modern” psychiatric labels I can think of].  As greater understanding of brain disorders has emerged over time, hysteria has been slowly winnowed away to nothing.  These days it’s an antiquated concept, one of the few examples of a psychiatric label was loudly defended as SCIENTIFIC! … and eventually abandoned, very quietly, as completely untenable, nonexistent.

Look who’s back in town

What happened to the girls in Le Roy” ran in Sunday’s New York Times Magazine, and it appears that what happened was mass hysteria, renamed “conversion disorder” for the purposes of public relations and modernity.  Or so we are lead to believe.

This is a pretty long article, so let me give you the bullet points:

* Starting about 6 months ago, 18 teenage girls in the town of Le Roy (in Western New York) successively came down with strange symptoms: tics, so-called “non-epileptic” seizures, flailing of arms and legs, etc. 

As you can see, this stuff is no joke:

Parents were individually told by doctors it was a “stress response,” but as more and more girls suffered they began to make connections.  Environmental toxins were suspected.

* Le Roy was an industrial town once host to flour mills, salt mines, (and slightly more recently), a large Jell-O factory.  One could “always tell what flavor the Jell-O factory was producing on a given day based on the color of the water in Oatka Creek.” 

Additionally, there are “natural gas wells on school property, toxic-waste cleanup sites within a few miles and a sticky orange substance oozing out of the playing fields.”  In 1970 a train accident in Le Roy dumped 10,000 + gallons of toxic chemicals including trichloroethylene (which has been proven to cause neurological damage), and currently fracking is a common practice in the area.  Put simply, there are a lot of environmental toxins to be concerned about in the area around Le Roy.

* Both the EPA [Environmental Protection Agency] and the NYSDH [New York State Department of Health] conducted tests for environmental toxins in the area and concluded nothing harmful was present in the air, water, or soil.  Independent (ie non-governmental) testers called in by concerned parents for a second opinion were barred at gunpoint by state police from collecting test samples.

* 5 months into the public health crisis, in January, officials announced their official opinion; it was conversion disorder.  These girls were “subconsciously converting stress into physical symptoms.”  They were suffering from mass hysteria.

Interestingly, this diagnosis was only announced AFTER a few girls and their parents made an appearance on the TODAY show to discuss their beliefs that environmental toxins might be the culprit – the very next day, in fact.

The author of the NYT article, Susan Dominus, goes to great lengths to have us believe that mass hysteria is the sole cause of these girls’ complaints.  She discusses turbulent family situations, traumatic pasts, social connections and alliances between them.  She is quick to discredit alternative diagnoses given by other doctors (such as Dr. Rosario Trifiletti, who suggested a newly emerging disease – PANDAS — which is an auto-immune disorder caused by an inappropriate response to strep infection and has been known to cause mental illness-like symptoms; more on that here), and marches out the EPA’s official findings of “no environmental toxins” at crucial moments in the narrative.

Probably in an attempt to pacify critics of the “conversion disorder” diagnosis, she repeats that it is a “real” disease – just because it is psychosomatic does not mean the girls are “faking it.”  We even get a little spoonful of brain science to prove the point.  (Something to do with lighty-britey brain scans, overactive amygdalas, etc.).

Some rather important points the author chooses to gloss over:

One of the girls closely followed in the story has been diagnosed with epilepsy — her mom was unconcerned while she convulsed on the floor on national television.  Another is reportedly taking 11 different pharmaceuticals.  One of the girls’ mothers has had a malignant tumor and a neurological condition called “trigeminal neuralgia.”  This woman has had surgery 13 times.  She also “suspects a cancer cluster on the street where she once lived in Le Roy — she and several of her neighbors have been stricken with tumors.”

That’s a lot of health problems for a small group of people!

Also:

At one point, reporters uncovered dozens of corroded barrels near the site of the aforementioned 1970 train wreck “oozing a putty-colored material” in an area labeled HAZARDOUS WASTE.  EPA officials quickly told reporters that they did not believe “for one second” that the barrels contained hazardous materials.  And what do you know… tests “proved” that they were totally safe.

Not for one second would I believe there’s hazardous waste in there!

You’ve got to be kidding me.

Most importantly of all:

There is at least one other girl suffering from the same symptoms who was NOT originally from Le Roy.  Lori Bronwell, a teen from Corinth, NY passed through the area last summer and soon came down with the same tics, twitchings, and spasms.  She was subsequently diagnosed with Lyme’s disease, and is currently being treated.  A press release from Dr. Trifiletti (the doctor who tested the girls for PANDAS) stated that two of the girls under her care also meet the Center for Disease Control diagnostic criteria for Lyme’s Disease.

Am I saying that all these girls have Lyme’s disease?  Of course not.  Am I saying it’s definitely environmental toxins?  No.

Here’s what I’m saying: I don’t know of, have NEVER heard of, a case of “conversion disorder”/hysteria that wasn’t really a case of a doctor reaching the end of his or her diagnostic rope (Freud included).  It is only too clear that levels of MANY neurological disorders and dis-eases — like autism, epilepsy, allergies — are rising and rising FAST.  These numbers simply can’t be explained away, not with claims of “under-diagnosis” in the past, and certainly not by telling those who suffer that it’s “all in their heads!”

We need to have a serious, public discussion about the very real consequences of toxic overload on our minds and bodies.  We need to keep searching for healthy and wholesome ways to live our lives, to heal ourselves and our world.

On the subject of meaningful goals 03/09/2012

Posted by ALT in Children's Mental Health, Philosophy/Spirituality.
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Exhibit A:

WordPress is “modernizing” itself, as fellow users can testify to.  One of the biggest changes to the interface is a feel-good sidebar that pops up every time I publish a post.  It looks like this:

Yippee!  Only 1 post away from my “goal” of 90 posts?  What an accomplishment!

Never mind that I didn’t set this goal – WordPress did.  In fact, WordPress resets my “goal” by increments of 5 or 10 every time I come this close to elevating my lime green levels to that little star at the end.  Truth be told, readers, I have never reached the gold star, and I never will.

If I did, I hope it would look something like this…

(but with golden stars, of course)

But what if my goal were quality of writing, not quantity?  Or perhaps something even more nebulous and difficult to measure, such as raising awareness of the issues herein discussed; processing my own thoughts about the treatment of the so-called “mentally ill” as it reflects our society’s values or lack thereof; or offering information, comfort, or hope to folks dealing with emotional distress?

These goals simply don’t fit into the computer-generated, lime green paradigm.

Which brings me to my first point:

A goal set for you by an outside entity is about as useful as a bicycle in the middle of an ocean.

It doesn’t fit the context.  It can’t get you where you’re going.  And by distracting you from the conditions at hand, by challenging your very experience of reality (are we on land or at sea?), it may very well sink you entirely into someone else’s view of your trajectory and existence.

Exhibit B:

I think I might’ve mentioned that I teach music lessons.

About a month ago, I started a new student (let’s call her “Liz.”)  She’s a freshman in high school with no less than EIGHT extracurricular activities!  Three private lessons per week with different music instructors, numerous choir and band rehearsals, physical therapy, music contests and performances to attend on the weekends.  Her mother proudly told me that Sunday is the only day she has any free time at all!  (Liz quickly added that she has to do homework on Sundays).

This mother believes that her child needs to be kept BUSY in a very structured, institutionalized sort of way.  It is safest, wisest, if her daughter’s time, decision-making, and activity are all managed by, completely filled up by, the expertise of professionals.

This doesn’t leave much time for self-discovery.  Quietude.  Mindfulness.

And with EIGHT extracurricular activities going at once, it doesn’t leave much time to develop real skill in any of them.  Liz is being taught the art of dabbling.

Learning to play a musical instrument takes time.  Daily time alone, actively cultivating the skills and the ears necessary to produce a sound, and then refine that sound until it truly sounds good (we call this “practice,” and it is a practice – a meditation).

It is a discipline, a pursuit.  But it is something to relish!  During this alone time you are invited to continually reflect on the sounds you are producing and how to make them more harmonious, more resonant, more beautiful.  You are wrapped up in the magic of the music you are creating, and you are creating that music – not for pay or reward, not because you are forced to – but simply for your own pleasure and betterment.

If we are too busy to take the time to do this for ourselves – in any capacity; not necessarily music – can we achieve anything truly satisfying?  What are we really teaching our children when we enroll them in far more activities than they could ever really complete satisfactorily?  Again, here is this issue of quantity vs. quality.  My student Liz probably has more participation medals, trophies, and certificates than she knows what to do with.  Her college application materials will list a truly impressive array of extracurricular activities, a veritable cascade of golden stars!

But moving once again beyond the lime green paradigm, what has she accomplished?  Is she satisfied with the level of skill she has obtained in any of her areas of study?  Does she know what true competence in any field is like?  Will she ever?

Liz’s mom contacted me the other day.  The high school band has been selected to march in a parade at Disney World!  Liz really wants to go.  Unfortunately, she plays piano and sings – no place for these instruments in the marching band.

The solution? I am to teach Liz to play the music on a saxophone.  An instrument she has never touched before.  We’ve got 3 weeks to do it, and judging by Liz’s incredibly busy schedule, she won’t have any time to practice outside of our lessons, so that makes three hours to do it.

As her mom explained it: “if she doesn’t learn to play the sax, she’ll have to just hold a flag or some cymbals, and that would be embarrassing.”

Maybe her mom doesn’t realize it, but she’s going to be marching around pretending to play the saxophone (that’s all I’ll have time to teach her) – what could be more embarrassing than that?  Finding yourself onstage, ready to perform, and realizing that you don’t know how to play the instrument… it is the stuff of nightmares!

The band’s invitation to march in the Disney World parade is seen as a great achievement – all the students, Liz included, are going to be congratulated for their “hard work,” their “effort.”  There will probably be a trophy to display with all the others in the glass case at the front of the band room, they will be told that they have accomplished something.

But who among those students has ever known, independent of any medal or rubric or congratulatory figure, that he has accomplished something?  That it is an accomplishment by his standards, and no one else’s.  Who among them has ever privately or publicly rejoiced in reaching the end of a journey that was plotted, from beginning to end, by him and him alone?

If our children were permitted to do this — set goals that are meaningful to them and pursue them in their own fashion with the loving support and guidance (when called upon!) of their communities, their families – our society would look dramatically different.

I’d LOVE to see the looks of it.

An Open Letter to Individuals Having Intense Spiritual Experiences 03/07/2012

Posted by ALT in Mental Health Awareness, Philosophy/Spirituality.
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[this is an excerpt from a recently published booklet entitled "Multicultural Competence, Intense Spiritual Experience, and Mental Health: A Self-help, Peer Support  and Service Provider Technical Assistance Tool," written by Lauren Macuso.]

This letter was written by people who have lived through these [intense spiritual] experiences. We were called together for a reason: to create information that will help others through these experiences. Your healing and support has already begun!

What’s going on? What is this? I’m scared and don’t know what to do.

Be aware this is a process. Trust the process. It is a chance to let go of some things you no longer need and to explore and find new parts of yourself. You can make meaning from this experience. Find spiritually sensitive people to talk to.

Find someone safe who will respect your experience. If someone treats you like you are “crazy” or “mentally ill,” seek another person who is willing to be with you. There are people who are experienced in this and who understand this territory. It is important to find someone who will provide acceptance, understanding and reverence for your process. Someone who will not label your process, or stop it or “fix” it, but will hold witness without any agenda other than to hold sacred space and honor your innate wisdom and wholeness.

Even though your experience is powerful and special, be sure to take care of yourself—sleep, eat nutritious food, breathe, use centering practices, walk in nature. Be respectful of your body even if you feel good. Find a place of beauty and serenity to be in.

Find a way to express what is going on with you: painting, journaling, writing poetry, movement/dance/music, etc. Find a way to express yourself that feels authentic to you. Consider finding a culturally appropriate healing model that uses ceremony, ritual, or traditional counseling that feels authentic to you.

Trust your intuition to find the right help if you encounter any dark or negative energies, spirits or fears.

- from Multicultural Competence, Intense Spiritual Experience, and Mental Health, by Lauren Macuso

 

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