Who Do You Advocate?

There’s an argument that’s not a good argument that people think is a great argument that is really a weak argument. First, let’s do a little visualization.

Imagine I’m 12 years old. Imagine I’m sitting on the edge of a brick pot housing a small tree, and I’m eating my lunch, my good old healthy baloney and mayonnaise sandwich that is probably healthier than the slop fed in the cafeteria. Imagine, as I sit there, two thirteen year old girls with their shorts they hid under pants before leaving their house, with their golden loop earrings down to their shoulders and their Coach sneakers they tell everyone their mom got for 100 dollars at Coach, but were really thirty dollars in Marshalls.  They slap my sandwich from my hand. They knock over my last sip of carton apple juice. They call me names like poor and stupid throw my backpack across the yard and laugh. They push me on the ground when I get up, and laugh, and rub my face in the dirt and laugh and this goes on every day for four years until the ringleader’s mom gets busted for her meth lab in the garage and the ringleader has to move.

Their bullying leads me to start a hashtag on twitter. #stopbaloneybullying. The hashtag is a sensation and I become the head of a campaign, then a non-profit foundation, then a non-profit national organization against bullying. Then my accountant quits, and all the connections made throughout the years sit on a stick and drop out as funders.

Word gets around a company called “Cheap Shoes for High Prices (CSHP)” sold primarily to teens and children were interested in us, and I become interested in them. I meet them and realize one of the women was the girl who slapped Baloney out of my hand. She apologizes about that, though, after the meeting, and says she’d love to become a funder, she funded several other bullying organizations in small areas.

I say yes and soon notice things. Not good things, not bad things, just things. I hear the way their staff bullies other staff, intimidates them and certain kinds of customers. Kinds of customers that looked like me and sometimes who I met walking through the store. Those kind of customers and I all had similar stories.

Then the CSHP business start telling me how to run my campaigns, which kind of children I could hire in commercials, and say I need to push against the state’s attempt to hire more counselors for public schools to stop bullying, that less counselors aren’t the problem, it’s troubled youth that are the problem, and teachers aren’t noticing. It’s the teachers and poor school policies that are responsible. I say yes because they fund 76 percent of me.

People tell me it’s Conflict of Interest. Financial Conflict of Interest.

And this, dear readers, is the problem with NAMI. It’s the problem with DBSA (Depression and Bipolar Support Association), it’s the problem with MHA (Mental Health America) and any other form of MHA, like the Mental Health Association. It’s become a problem with websites, and mental health advocacy groups in general.

Pharmaceutical companies are everywhere, they’re a virus, very similar to the kind they treat with their vaccines. Don’t get me wrong, being free of Polio is great. Being free of the measles and chicken pox is also pretty damn great. Anesthesia for surgery, wonderful –if your anesthesiologist is paying attention and knows what he’s doing. Blood pressure pills under a watchful eye? Keeps half of my family alive (which is a whole other philosophical question I don’t feel much like going into right now).

But psychotropics?

Maybe it’s not the meds, maybe it’s the people who push them and claim them as gods that are the problem. Maybe it’s the fact that they aren’t thoroughly researched, or that their efficacy is often exaggerated and/or doesn’t exist statistically or realistically. Maybe it’s the fact that the people who stand behind these meds get involved in areas they need to get outofvolved.

What Do You Mean “OutofVolved?”

In June of 2016, New York University Medical School shut down a total of eight studies at their psychiatric research center. Quietly. This wasn’t in the big news, it wasn’t anything any president spoke of or any mayor took real notice of. The lead investigator/Director of Molecular Imaging program for Mood and Anxiety disorders/professor Dr. Alexander Neumeister was dismissed.

The main objective of Neumeister and his team were to study the effects of a drug that mimics Marijuana to treat PTSD. Let’s examine THAT statement for a moment. A synthetic, lab-generated drug that mimics the natural effects a plant has on our brains to ‘treat’ experiences related solely to trauma. There are several things wrong with this picture before the study even beings. 

 

Firstly: biological markers and blood tests. For PTSD. That defies all logic on every level. Their defense was there were lower levels of the brains natural version of THC/Cannabis in those who were traumatized severely, as if the brain isn’t capable of increasing that neurotransmitter in other ways besides medication. It’s one of the ‘controversial’ areas of psychiatry these studies aimed to test. The guinea pigs of the experiment were given this fake marijuana pill and shoved out the door without any real follow up.

Pfitzer, the pharmaceutical company who created this FAAH Inhibitor, and tested it on guinea pigs with osteoarthritis (we’re all clear guinea pigs = humans, right?), said there were no real side effects, and approved it for testing with NYU. The FDA shot a warning letter listing the observed conditions in which could have, and probably would have, undermined the validity of the study. I would list these conditions if there weren’t a million of them.

Manipulating research  is more common than expressed in the archives of FDA warning letters. It’s not difficult to create an experiment which looks appealing, sounds appealing, and has appealing results when you have a few billion dollars you’re willing to throw in the direction of the researchers.

Pfitzer was not a silent partner, they weren’t a bystander, and for them to say “N.Y.U was responsible for conducting the trial” without reminding the public the millions they sponsored the trial with, without reminding the public they own the rights to whatever research is discovered-, without reminding the public they’re shady for denying any public access to their clinical trial results is only reminiscent of that one kid in kindergarten who pulled everyone’s hair then denied doing so even when the teacher saw them do it.

If corporations are considered people by the law, then they should be tried in family court because they all act like children.

They lie like children as well. This particular F.A.A.H inhibitor killed one of six clinical volunteers and sent the rest to the hospital with neurological damage. 

The bottom line? If they–the pharmaceutical companies–fund something, they control it. They own it, they direct it. What is supposed to be neutral, valid, and reliable data becomes tarnished with serious manipulation of controls, of bias, and of confounds.

What Do Advocacy Groups Really Advocate?

A large portion of the community here is involved with NAMI. They offer support groups and volunteer positions, job positions even, giving those of us who have a struggled a chance to get our voice heard and a purpose, a reason to wake up in the morning. That’s a beautiful concept. CONCEPT. 

It’s no secret that NAMI, DBSA, Mental Health America, and Mental Health Associations are the largest so-called advocacy groups which receive the bulk of their funding from five or more pharmaceutical companies. Let’s pick on NAMI.

In 2016, NAMI received 20,500 from Astrazeneca, 50,000 from Bristol Meyers Squibb, 28,000 from Eli Lilly, 25,000 from Navartis, and I would share the results from Pfitzer, but they block public access to quarterly and yearly reports.

To find this information it’s not too difficult: get the name of a pharamceutical company, and search for their quarterly reports or type in Google “Johnson and Johnson Donations”. A nice blurb of bullshit from my favorite man Alex Gorsky will pop up, but so will their quarterly reports of the organizations and non-profits they’ve donated to. I’ll only list a few findings in this article: the rest is up to you.

In 2016, NAMI, from just those 4 companies, received 123,500 dollars. Considering at least 60% of their funding comes from Big Pharma, you can imagine the donations they also receive from Pfitzer, Roche Pharma, Sanofi-Avantis, Wyeth, Johnson and Johnson/Jassen/all the other Johnson and Johnson Pharma companies, Merck–the list could go on and on. Until donations hit the millions. 123,500 is nothing.

Why does this matter? Why does it matter if people’s lives are getting to be filled with purpose and hope and community?

In 2004, Josh Weinstein, a man who served in senior executive positions for three large pharmaceutical companies and is president of jw Einstein Strategic Messaging, said this:

“As a veteran pharma marketer, I have witnessed that the most direct and efficient tool for driving long-term support for brands has been, and continues to be, a well-designed, advocacy-based public education program . . . working with Advocacy groups is one of the most accomplished means of raising disease awareness and enhancing the industry’s image.”

That doesn’t sound much like the community boosting, empowering-the-‘mentally-ill’ interest of advocacy groups.

This is a financial conflict of interest, a large one, and as the pharmaceutical companies donate more they use their power of funding to manipulate the advocacy groups, pressing them to fight against state legislatures, particularly those who have attempted to lower the amount of prescriptions doctors could write in certain states.  NAMI, DSBA, MHA, become puppets.

At this point, they’re advocating Big Pharma, the idea of Mental Illness, and the myth of chemical imbalance. They’re advocating brands with their hashtags on twitter about the importance of research, and they’re advocating our dependence on a system whose interest is already conflicted.

It’s leaking into the alternative world. Those of us who are peer mentors, counselors, supporters, whatever you want to call us, aren’t safe from this infectious disease.

There is a certification run by the MHA called “Peer Specialist Certification”. This allows individuals with lived experience of mental health issues, training, and job experience  to be recognized by clinical standards as people who can offer support to others struggling. It allows peers to work beside psychiatrists, psychologists, and in primary care settings. Once again, great concept, disturbing execution.

Alkermes and Johnson and Johnson are two large funders of the MHA, pitching in 50,000 to 100,000 dollars each specifically for peer certifications and peer programs. What’s stopping them from forcing their agenda into the peer world as well? What’s stopping them from making certain specifications in the certification that may very well go against the togetherness and honesty peer support stands for? What’s stopping them from doing to the MHA’s certification program what they’ve done to NAMI?

What All This Means

As a peer supporter, were I to find out a program I worked for or did business with received funding from pharmaceutical companies, and with that implemented the pharmaceutical companies’ agenda into their business, pressed this idea of mental illness, pressed the myth of chemical imbalance and then had the audacity to call that “advocacy”, I’d quit. I’d live on the street again before I compromised my morals.

After speaking with Mike, the C.E.O of the website The Mighty, and learning that they too are in the workings of receiving revenue from such companies, that they will start having “surveys” available to contributors on their website, surveys presumably conducted by Big Pharma for whatever petty research they claim to be doing, that he declined to go into further explanation, I understand this infection is spreading rapidly.

If we looked at this with a lens from the DSM-V, we could easily spot the Antisocial Personalities heading the executive seats of these companies. If it look at this through a lens of facts and truth, we see greed and dishonesty and major conflict of interest. We see that consumers aren’t aware of the inner workings. We see that consumers don’t read the research that debunks Chemical Imbalances. We see that the FDA takes more time cracking down on small CBD businesses rather than large pharmaceutical companies like Pfitzer and their shady research teams.

We also see large groups of people coming to together outside of this. We see people understanding the true, humanely benefits of alternatives, we see people spending their waking hours debunking the invalid research conducted by these companies. We see people flourishing beyond whatever sickness they’re purported to have, not because they’re cured, not because they’re “taking their meds”, but because they’ve had the opportunity to grow comfortable being human.

Big Pharma sending money to advocacy groups isn’t the end of the world. It keeps the non-profit alive, and from a business standpoint, that’s all that matters to them. The end of the world only comes when we turn a blind eye to truth, the end of the world comes when we dismiss the truth just because the good people working in these non-profits have no personal connection with Big Pharma.

It’s the end of the world when we think #mentalhealthawareness means something.

 

Resources:

F.A.A.H Inhibitor Trial

FDA Warning Letter To Neumeister

N.Y.U studies shut down Critique

Manipulation In The System

N.Y Times Reports On N.Y.U

DBSA Donation Reports (have to enlarge, they don’t make the print readable).

20 Pharma companies listed on MHA

Manipulation In Clinical Research

 

 

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To be a Psychiatric Critic

What does it mean to be a critic of the psychiatric industry? There are a couple ways we could go with this, considering there are many people who claim to be critics, who claim they recognize “there are some flaws in the system”, or that “things could be improved”.

That doesn’t tell me much about their understanding of the industry. What that tells me is that they have general knowledge that nothing in this world is perfect and that everything, theoretically, could use improvement. Why is this not a criticism? Well, because it’s well understood, it’s not unique, and it doesn’t require any real knowledge of the system to say.

I could walk into a Wells Fargo Bank, turn to the person in line behind me and say “wow, this building could really use some improvements, look at that crack in the ceiling.” You wouldn’t call that a true critique of their building, of their establishment, of their maintenance crew, would you? I made an observation a million other people have before me, and a million other people will after me, and I still know nothing about why the crack is there, what’s halting repairs, who the crew is who should be patching it, how much of a budget there is for repairs–all the things I’d need to know to really understand this situation.

There are enough cracks in the psychiatric system to ruin fifty thousand Wells Fargo Bank buildings.

 

To be a critic of something like psychiatry you need a little more gut than what it takes to have the same opinion as everyone else. You have to be willing to put in the effort it takes to read the research and understand that what isn’t being said to the public is much more powerful than what is being said to the public.

To be a critic of something like psychiatry you need the ability to put aside your personal beliefs sometimes and view the facts:

  1. Big Pharma is, well, a BIG corporation.
  2. There is no definite research that proves any mental “illness”, including schizophrenia and bipolar, are diseases. THAT is a theory.
  3. There is no definite research that proves any mental “illness”, including schizophrenia and bipolar, are a result of chemical imbalances. THAT is a theory.
  4. Know what a theory is. Know that it can never be proven, only disproven. 
  5. Know that the APA (they write the DSM), Big Pharma, and insurance companies speak with each other.
  6. Understand that none of this means you should immediately stop all of your medication. I’ve done that. It. Sucks.
  7. Understand that the only scientifically verified chemical imbalance occurs when medications are taken.
  8. Understand homeostasis in the brain and what happens when it’s disrupted.
  9. Know the history of psychiatry; know it’s a business. 
  10. Understand the politics involved in the business.

The two in bold are fairly important. They’re important because it is impossible to truly understand a system without knowing where it came from, how it started, and what philosophy drove it into existence.

Knowing about theories seems so incredibly basic, but a lot of people misunderstand it when they read about chemical imbalance. So let’s debunk this a little to further drive the point of an actual criticism.

Chemical Imbalance Theory: Things called mental disorders/diseases/illnesses, whatever, possibly caused by an imbalance of natural chemicals in the synapses during neurotransmission. The evidence consists of studies done on the brains of people who have taken medication at one point, or who are currently on it. Studies done of people during hallucinations or mania or depression. Studies done on small groups of people, once or twice, with results being generalized and any possibilities of traumas in the past being disregarded.

Let’s think scientifically here, and disregard any opinions we may or may not have about mental “illness”. Let’s also keep in mind that the neural connections within the brain are unique for each individual, like a finger print, and they change with our experiences in life.

If we are doing studies on people who are, or have been on medication, it can’t be ruled out that the experiences aren’t being worsened or created by said past/present medication.

If we are doing studies on people who have been having these experiences for years, and have never done a study on them in infancy (I’m talking 0-3 years of age), then we have no standard to hold it against: it can’t be an imbalance if there is no “balance” as a control. And for those saying they have scanned the brains of people who don’t have these experiences, how can that be considered a true control when every brain is uniquely different in their neural connections? Scientifically, that makes zero sense. To the general public, it makes a bunch of sense. We really need to start putting more funding into STEM programs if the general public is accepting sub-par experiments like this.

Because there has been such little research on how environment, trauma, and social factors play into the development and constantly changing plasticity of the brain, ignoring those key areas of life is essentially saying the brain only relies on its physical structure to know when to release chemicals. And that doesn’t make sense, considering there are external sources, like a blooming flower, that cause in some of us a rush of emotion like happiness,  a rush of dopamine. Had we not seen the flower, that dopamine may not have been released.

In a very thought-out article on Scientific American you can read here sums this up perfectly and has one of my favorite quotes by neuroscientist Joseph Coyle at Harvard: “Chemical imbalance is sort of last-century thinking. It’s much more complicated than that.”

This articles points out, in regard to depression, that although pharma makes claims that there are certain decreased or increased levels of neurotransmitters which cause depression, there are several different antidepressants that act on several different neurostransmitters, increasing or decreasing, that work for different people in different ways. Essentially, that takes the power out of what the pharma companies claim.

DR. Mark Graff, Chair of Public Affairs of the APA said simply that the theory of chemical imbalance was “probably drug industry derived”.

Psychiatrist David Kaiser touches on the exact problem I stated above when he says “Patients [have] been diagnosed with ‘chemical imbalances’ despite the fact that no test exists to support such a claim, and . . . there is no real conception of what a correct chemical balance would look like”.

Just as there are theories in physics, there are theories in psychiatry. They can’t be proven, but they can be disproven, debunked, and through true criticism of this industry that is achievable on a widespread scale.

So the next time you go to rest in that comfortable middle ground of “the system could use some improvements, but everything could”, think about what you mean and how you formed that opinion. We don’t need anymore complacency in this world, particularly not in psychiatry. We need strength and understanding and facts.

To read up further on where I got the quotes above, see this pdf.

To read up on my thoughts on the system published on Mad In America, click here.

Soteria, Peer Respites, and The Future.

In honor of 7/10: a special piece on a particular psychiatrist who helped catalyst alternative thinking within the psychiatric system. July 10th was the 13th anniversary of his death. He was also one of many sporadic voices focusing a harsh light on the cracks in the dam of the system, particular the APA of which he was a board member for 35 years. In his resignation letter on December 4, 1998, he stated clearly the truth:

“Unfortunately, the APA reflects, and reinforces, in word and deed, our drug dependent society. . . at this point in history, in my view, psychiatry has been almost completely bought out by the drug companies. The APA could not continue without the pharmaceutical company support . . .”

He had a few choice words about the organization NAMI.

“In addition, the APA has entered into an unholy alliance with NAMI (I don’t remember the members being asked if they supported such an organization) such that the two organizations have adopted similar public belief systems about the nature of madness. . . NAMI, with tacit APA approval, has set out a pro-neuroleptic drug and easy commitment-institutionalization agenda to move forward. . .”

And of course, his words on the DSM:

“And finally, why does the APA pretend to know more than it does? DSM IV is the fabrication upon which psychiatry seeks acceptance by medicine in general. Insiders know it is more a political than scientific document . . .”

We’re talking, of course, about Loren R. Mosher, M.D. If you’d like to read his letter of resignation, you can click here. It’s fairly short, but highly powerful. He speaks on the fact that there is no damning or solid evidence to support that any “mental illness”, particularly schizophrenia, is a “brain disease”–which still holds true to this day. The studies conducted on the flow of neurotransmitters during “active” phases have two invalidating, but obvious, issues:

  1. In early experiments, people were on neuroleptics. That obviously effects neurotransmitters. Invalid.
  2. We have nothing to compare this to: the so-called “decreased white matter” or “increased dopamine” could be a result of so many things, including years of antipsychotics, and without tracing this person and their exact brain chemistry since fetal development and birth, without having a clear image of their brain chemistry before the onset of their experiences, there’s no possible way you can conclude, and be valid in your conclusion, that those two observations are the result of a “disease”. INVALID. INVALID. INVALID. 

Mosher felt the acceptance of schizophrenia as a “disease” was essentially just a function of “fashion, politics, and money”.

Don’t feel invalidated by that, because he’s not invalidating individual experiences here, he’s invalidating the economic leverage organizations like the APA or NAMI or Big Pharma receive from promoting this idea of “brain disease”, by publishing weak data the public would never notice if they didn’t take five psychology research courses in college. How many of us with mental health issues have taken five psychology research course in college, including behavioral statistics? How many of us, when we read a research paper, really know what we’re reading? 

Many of us never read the actual paper, we only read what’s been reiterated in other articles. That’s like playing that game “telephone” when you were a kid: whispering different phrases in each other’s ear and when the last person says what they heard, it’s never what the first person said. That’s exactly what this is like.

Mosher didn’t just run around spewing “psychiatry is a lie! You’re being dooped!” with a sign on his chest saying “THE END IS NEAR” and a tin foil hat. He was born in Monterey  California, obtained his first degree from Stanford and his medical degree from Harvard where he received his psychiatric training. To me, that means nothing. What he went and did with it, I respect.

He visited Kingsley Hall in England (more on THAT in a different article), learned what he could, skeptical of the level of support, returned to the U.S and became the first chief of the NIMH Centre for Schizophrenia studies. Within those years, inspired by many past theories, philosophies, and attempts, Soteria Project started.

This wasn’t your average experiment. This wasn’t 30 days with a few questions, a sugar pill, and a checkmark by your name. This was a lengthy study, and the community stayed open from 1971-1983, with a two year follow up, and not-so shocking results–depending on who is reading the research.

Here’s a quick overview of the project.

Requirements:

In order to be apart of this experiment, one needed to meet certain requirements:

  1. A diagnosis, by 3 individual clinicians, of schizophrenia (based on the DSM 2).
  2. Deemed in need of hospitalization.
  3. At least 4 of 7 Bleulerian diagnostic symptoms (explained below) by 2 independent clinicians.
  4. Not more than ONE hospitalization for 30 days or less.
  5. Ages 18-30
  6. Marital Status: Single

Bleulerian symptoms: “autism”, in this way meaning a withdrawal from reality into fantasy, and affect (flattened, inappropriate), associations (loose ones), and ambivalence (mixed/contradictory feelings). Hallucinations–mostly voices, thought broadcasting, somatic mix-ups (believing someone else is imposing something on your body), delusions–all those kinds of fun things.

The purpose of the age and the hospitalization requirement wasn’t to exclude old people, it was so the project could hold some validity: the individuals taking part needed to have never been drowned in the system, or muddied up with medication. For comparison, Soteria was running up against traditional hospital treatments: confinement, involuntary medication, involuntary isolation, and stigma.

The Experiment:

Mosher describes Soteria as follows:

 “. . . a 24 hour a day application of interpersonal phenomenologic interventions by a nonprofessional staff, usually without neuroleptic drug treatment, in the context of a small, homelike, quiet, supportive, protective, and tolerant social environment. The core practice of interpersonal phenomenology focuses on the development of a non-intrusive, noncontrolling, but actively empathetic relationship with the psychotic person without having to do anything explicitly theraputic or controlling.”

The key word here, being empathetic. Not sympathetic. Not pity.

Well, there are several key words. Nonintrusive. Noncontrolling. Homelike. Supportive. Not things you usually associate with a mental health facility.

In his words, he describes the role of these “nonprofessionals” as someone who is “standing by attentively”, or “being with [the person]”, or “stepping into the other person’s shoes”. If anything, the point of the staff was to “develop a shared experience of the meaningfulness the client’s individual social context, current and historical”.

They took a bunch of psychology graduates in their mid twenties, and stuck them in an environment with people aged 18-30 who were actively “psychotic”. That’s the bottom line. There was no medication intervention. A psychiatrist stood by as peripheral, but he never was involved in treatment or decisions. He was kind of like a mannequin with eyes that blinked–that’s about as useful as he needed to be.

For many individuals, it took 4-6 weeks for their lucidity to break through and they were able to have conversations about where they wished to go next, what they wished to do, and built a plan around that with staff.

“Subjects” stayed for 5 months. The control subjects who were in for hospital admission stayed 1 month. Regardless of that difference, the cost for “treatment” was the same for both: around 4,000 dollars each.

Results:

The first six weeks there was marked improvement in communication, focus, and wellbeing, regardless of the lack of neuroleptics. After the two year follow up, only 3% of those from Soteria were maintained on medication. Compared to the control levels from the hospital, those at Soteria during the years 1971-1976 two years postadmission had higher level jobs, lived independently or with peers, and had fewer re-admissions.

There were two other Soteria-like programs built: Emanon and Crossing Roads. Crossing roads included clinical staff, medication, and a shorter more “motivation” focused stay: helping people prepare for life in society. You can read the compare and contrast in that straight from the source, linked below.

In order for programs like this to work as well as they did in his study, Mosher developed some guidelines:

  1. The setting needs to interact with the community and be indistinguishable from the community (I.e, a house on a block in a neighborhood).
  2. A small space, fitting about 6-10 people and admission must be informal and thoughtful of the person’s mental state.
  3. The staff isn’t there to bombard or control. They must be willing to understand “immediate circumstances and relevant background that precipitated the crisis”. This is what fosters the relationship and connection that allows staff to step into the other person’s shoes and support them in preparing for the social world.
  4. The relationship has the staff in multiple roles: companion, advocate, case worker, and therapist–without the therapy part. They make on the spot decisions, but include the “client” in the decision. The staff use this as a way to gain leverage in their field when they pursue higher mental health related degrees, and often have an interest in working with those in psychotic crisis. They are usually “psychologically tough, tolerant, and flexible” from lower middle class families with a “problem” member. MD’s are not in charge of the program.
  5. Staff prevent dependency and encourage “clients” to remain in contact with support networks. Clients may report feeling in control of themselves, and full with a sense of security.
  6. Access and departure is easy. Other than readmission, the clients have other means of staying in contact with the program: drop in visits, advice, or support over the phone. All clients are welcomed back once a week for an organized activity.

As a result, those who participated in this program remained socially involved, aware of the support THEY needed, rather than the support being shoved down their throat. They were given a sense of community, developed a sense of self, and that’s when the programs were shut down due to lack of funding.

Insurance companies and HMO’s refused to pay for something cheaper than hospitalizations, that promoted well-being and self-sufficiency without medication. Not to mention backed by extensive research, of which most hospital procedures and models do not have. They never will.

Conclusion:

What Mosher created was a Respite.

What we’ve further developed, upon the same principals with much amendment, are Peer Respites. However few and scattered they are, they exist, still with no big funding from major corporations or companies, nothing that would secure their existence as hospital’s have.

Rather than staff who have graduated with psychology degrees, Peer Respites are staffed with Peers: people who have swam in the deep pool of depression or swung high in the throws of Mania or slapped on that infamous tin foil hat to keep out the aliens. Whatever. I’ve never put Tin foil on my head, but I have wrapped myself in clear packaging tape to keep demons from scratching my skin. Close enough, right?

It didn’t work, by the way. I’m assuming the tin foil doesn’t keep out the aliens either, so I won’t try it. If aliens want my brainwaves, they can have them as long as they make me really good at math and whisper answers to me during tests.

Mini-Tangent over. I’ve forgotten what we were talking about.

Peer Respites. Not staffed by graduates, still not headed by MD’s, and still a community of quiet, supportive, community-based experiences. I have no clue how other’s are run, but the one I’m apart of has groups, outings (beach, hiking, whatever), trainings (for us), and a WarmLine: a phone number to call when you’re in need of support. It’s all very Soteria-esque, and also very modern. It gives those of us who are fortunate enough to “work” there a purpose, and a chance to be involved. Sometimes that means no more reliability upon disability checks. That’s huge.

Independence is encouraged: cook your own meals, wash your dishes, do what you need to during the day, call if you’re out late. We do meals together as well, everyone chips in–as much as some can–and no one is chastised if they can’t. Encouraged maybe, but never chastised. Humanity is a thing here, you see. A pretty big thing.

The wording as changed. For us, no one is a client: we have guests. We’re a house on a street in a neighborhood. We’re voluntary and self-referred. There’s no diagnosis, we don’t hand out medication, and we don’t judge if you’re on it or not.

The idea that humanity, kindness, and understanding is enough to support even the most “psychotic” person isn’t a new idea, you see. It’s just not one supported by the APA or Big Pharma. Most clinicians I’ve spoken with have never heard of such a thing, so it’s not spoken about in training, courses, or conferences unless those trainings, courses, and conferences are solely focused on Peer Support. Once again, not supported by the APA or Big Pharma. Can you think of any reasons why? I can think of a few dozen.

Were something specifically like Soteria to come back, it would be a game changer. To remove this idea that because you’re struggling, you need to be confined for your own safety and the safety of others only perpetuates this idea we’re violent, out of control, and unable to function in society. Not only does it send that message to the public, but it sends it to ourselves as well. And when we believe it, it comes true.

To direct people in crisis away from the system before they ever really become in contact with it, staffed and run by peers–that’s a dream in the making. That’s a recreation of Soteria. That’s a hybrid of Peer Respite. That would take a lot of funding. That’s been a goal of mine since I was 15. It’s been a passion since I learned Peer Respites still exist, and that the idea didn’t die with Soteria’s funding crisis.

It’s amazing what a little compassion can transform.

Links & Sources:

Soteria Review/explanation By Mosher

Bleurian Terminology and what schizophrenia was classified by

Mosher

Resignation letter (in case you missed it)

R.D Laing (Kingsley Hall)

A push against Psychiatry

The Peer Movement

Care For Some Drugs For Your Drugs?

The FDA had approved Fanapt and Saphris four or five years before I did a post on them two years ago. Let’s recap. Please. Let’s.

You should sense some tension in that first sentence. If you don’t, then I’ll just tell you: there’s tension in that first sentence. 

Fanapt: 

Treatment target: people labeled with schizophrenia.

Two clinical studies got this drug FDA approved. One was a six-week study, one was a four-week study.

In the six-week study (42 days) there were 706 people. Let’s keep in mind that the minimum amount of days for a clinical trial to be considered relevant is 30. Three long term efficacy trials were conducted at once (source). Each individual trial lasted ten weeks. That’s “long term”. I wonder how long those of you who have been put on Fanapt have been on it at this point. If my sarcasm hasn’t been evident yet, look harder.

Fanapt was concluded to have the same long term efficacy of HALOPERIDOL.

Fanapt is an atypical anti-psychotic, meant to have a lower risk of EPS and Tardive Dyskinesia (TD). Whether or not that’s true is up for debate. Haloperidol is a first generation anti-psychotic. It’s infamous for EPS and TD. Why? It’s been around longer.

Both are the same level of “effective” (whatever that means). How much between first-generation and second-generation has changed, then? 

The four week study had 604 guinea pigs. This study was 28 days. They must have done it in February. A loop-hole? “We can’t control the days in the month, this should be an acceptation to the rule, waa, waa, waa, cry, cry, whine, whine until we get our way”. That’s what they do. Remember Alex Gorskey?

Fanapt had similar efficacy to the control antipsychotic used in the study.

surprise-006

Let’s move on.

Saphris (source):

Treatment target: People labeled with schizophrenia, in a manic episode, or a mixed bipolar 1 episode.

Oh this is rich.

This study agrees the effects are minimal, if they exist at all in terms of Saphris.

Three short-term studies got this approved for schizophrenia. Each 6 weeks. Listen . . . my laughter is making it impossible to type. Okay, okay listen to this:

  • Controls: Haloperidol (the 2nd chemical lobotomy), Olanzapine (Zyprexa; Atypical), risperidone (Risperdal; Atypical).

1st trial:

  • Placebo-Controlled.
  • 174 lab rats
  •  Conclusion: Saphris was superior to the placebo (i.e, sugar pill). I think this deserves a standing ovation. Or should we wait until the end? Let’s wait until the end.

2nd trial:  

  • 448 enslaved
  • 5mg dosage twice a day was apparently superior to the placebo (let’s clap for this, fantasticgood job, amazing), but 10mg twice daily did not surpass the placebo. Something is weird about that.

3rd Trial:

  • The drug could not in any way be distinguished from the placebo. One of the active-controls (probably ‘the chemical lobotomy’ again) was superior in every way. Whatever superior even means to these people.

Let’s breathe and, as promised, stand and clap and whistle if you can. Why am I bringing all of this up? Why am I digging up old news like it was your childhood kitty cat who’s been buried under the rosebush by the fence? Well, let’s think about it.

They put so much effort into pushing out antipsychotic after antipsychotic (i.e, Invega) and recycling the same drug labeled with a new name (Haldol vs Fanapt/Saphris) that they have to start creating drugs to fix their first mistakes: the lifetime effects of TD. 

The FDA, this month, right now, approved the first drug for TD. It’s called : Ingrezza (valbenazine). I found this out, of all places, from NAMI’s twitter.

deep-breath

*Deep Breath*

Let’s do this one more time, shall we?

Ingrezza:

  • Side effects: So far, one: Somnolence (drowsiness). Let’s give it a few years.
  • 234 unfortunate souls with TD and “underlying schizophrenia”, whatever that means.
  • Six-weeks.
  • The group which took Ingrezza showed a “statistically significant change” in their TD symptoms versus the Placebo which is all they have to compare this to at this point.

I’ll say it once and I’ll say it again: it’s pretty much the motto of this website at this point; I’m not anti-medication. I’m not anti-psychiatry. I’m anti-stupidity. And this is stupid. It’s stupid because we all know very well when a drug is made to treat something, that drug–when coming off it–will exacerbate the something. That leaves you trapped, regardless of the side effects. And when you’re trapped, you feel helpless. And when you feel helpless, you’re reminded how sick you are even if you’re not sick. When you believe you’re sick, you limit yourself. When you limit yourself, these companies make billions and you make an indent in your couch.

You should be used to my bluntness by now. I shave it down for no one, and I never will.

If this drug does what it says it does, and it can “cure” the people who have been damaged by drugs like Haldol, wonderful. I’m going to count on that not being the case. I will count on it making a good 200 billion dollars though.

I’m looking for the logic here. So much effort into the production of antipsychotics, so little effort into the dynamics of the mental health system. I’m willing to take a huge, very educated guess and say that many people on anti-psychotics could, with proper support and belief and understanding of themselves, live without anti-psychotics as a daily ritual. Sometimes I don’t know how I do it, but I do. The more people who are able to do so, who are supported and not oppressed, the less TD there will be, the less need there will be for new TD drugs.

Neurocrine Biosciences, if you’d like a cure for TD, there you go. Need more information? Hit me up at 1-800-DELUDAMOL. I’m sure you’re familiar with the number.

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Deludin’ For 70 Years