Comments by Corinna West

Showing 144 of 144 comments.

  • We need a good strong business model to expand what is effective. We need the new paradigm to make the old system obsolete. $28 per hour to the client, $20 per hour for the peer, and $8 per hour to make a scalable business model might work.

    However, I am concerned that only 10% of peers pass the test. The test sounds more about what makes therapy effective instead of what makes PEER SUPPORT effective. Those might be two different things. In fact, Dr. Jean Campbell’s COSP studies looked quite clearly at what makes peer support effective.

    And also, the test sounds quite discriminatory against autistic people.

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  • Bob,

    There are other paths to social change besides policy change and practice change. As R Buckminister Fuller says, ““You never change things by fighting against the existing reality. To change something, build a new model that makes the old model obsolete.” That requires building a new system, not changing the old system.

    Furthermore, all your 10 steps related to lobbyists and laws and budgets, sure I’ve been working for free on this for about 20 hours a week for years and I’m on top if it. But guess who has 9 paid lobbyists who work on fat salaries and work 40 hours a week and just counter-vent everything I do? The provider lobby.

    And these public health foundations are still funding the PROVIDERS to do the advocacy work.

    How you supposed to do these 10 steps WITH NO MONEY????
    And where is the funding for advocacy? It’s going to the providers.

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  • I went into the NH State Hospital in Concord one time with Ken Braiterman. He led a WRAP group but it was more just patient advocacy consulting work. He told people about medical harm and coming off meds. The group I sat in, I remember him saying, “You need to tell the staff you will agree with anything they want, that’s the only way out of here. Once you get out you can work a different plan.”

    I asked him if the staff ever minded him discussion controversial (read factual) information. He said, “No, they have never tried to censor my group.”

    The local CMHC gave him an award, here’s his essay on that, one of the last things he wrote before getting sick with ALS.

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  • Most of these “mental health social entrepreneurships” give people really menial jobs. It’s like, sure, we’ll help you get to work, as long as you want to be a janitor or a housekeeper or clean up cow poop at the dairy. In fact, RedF, a social entrepreneurship accelerator, almost exclusively focuses on giving people menial jobs. We applied to them for “supported entrepreneurship,” instead of “supported employment,” of course they rejected us.

    And, evidence-based supported employment programs lets people choose their job. I’d be careful about giving La Fageda too much hype, their model doesn’t really reduce stigma.

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  • Maybe your foundation will be able to raise more funds than other psych survivor foundations. One of those foundations says they work for our community, but they pay their CEO $167,000 a year and secretarial staff $67,000 a year on average. It’s hard for donors to pay above market costs. Maybe that’s why they can’t raise much funds.

    If your foundation really works for our community, maybe you can raise enough funds to make a difference instead of spending over 50% of receipts on fundraising and staff like the other foundation does.

    It’s hard for advocates living in poverty to see people use our name and our cause to fund their own luxury living.

    Maybe you will do a lot better than that.

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  • It’s really hard as a pysch survivor to get help when the freakouts come back. I went back on psych drugs for a while – it was terrifying to walk into a system that was so horribly mis-informed. I couldn’t have done it except I had a lot of local friends connected there. A lot of psych survivors don’t make it because there is no way back really once you understand how much bs there is everywhere. Medical harm trauma is one of the the hardest forms of trauma to overcome because….how you gonna get medical care after that?

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  • Poetry for Personal has completed 139 Resilience Messaging Events in the last year. We initially started by working with student organizations including Active Minds. We found that those chapters would host lousy events. Their marketing was all disease model, and the only thing people wanted to talk about was their mental health labels. And the events were tiny. We started working with Black Student Unions and NAACP student chapters and the events got 10 times bigger. We started focusing on “overcoming adversity” and took all mention of mental illness off our marketing materials. That’s when we really started reducing stigma.

    All the disease monger slogans tend to avoid actual science. Ie, you can’t reduce stigma with protest based campaigns, ie, saying, “let’s fight stigma together.” And on and on.

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  • To all commenters who are anti-NAMI as a blanket statement:

    a) what is Your plan? b) who do you collaborate with to make your plan happen? who do you work with?
    c) NAMI represents the dominant paradigm, and how do you plan to reach mainstream America if you want to run away from or beat up everyone who holds those viewpoints?

    d) and, if you refuse to recognize NAMI volunteers as individuals with individual valid viewpoints, and refuse to recognize that some NAMI chapters are more progressive, and refuse to recognize changes that they are making,

    THEN, you are painting them with the same broad, brush stroke generalizations that you are criticizing them for. BE the change you wish to see in the world. IF you are against categorizing and labeling people, maybe this is your place to start.

    If mad people need to be judged as individuals with their unique stories recognized, so do NAMI people.

    By the way, the conference was horrible. All the people we sent hated it. No one was able to stay the whole time. Our people said, “outdated,” “inaccurate,” “not enough choice for workshops,” “too many large group activities,” “crowded,” and “too expensive.”

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  • In general related to therapy, I think that emotional distress is a universal human experience. So, expecting that everyone who has emotional distress, should work it out one on with a person who has seven years of student loans to pay off? That sounds unsustainable. We need other capacity building options.

    In specific related to EMDR, I dunno, I haven’t done the research. I know Scott Moore at KU has shown that 85% of the benefit of therapy comes from the relationship. And you can build therapeutic relationships for $4 an hour, like Big Brothers and Big Sisters does. Or for free like your local football coach and Scout Leader does.

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  • The trouble I find is that many trauma advocates want to preach about ACES scores and neurobiology. However campaigns to preach biogenetic trauma explanations and the ACE study outcomes are likely harmful. For exactly the reasons that campaigns to preach “mental illness” neurobiology is harmful. Because people see the trauma changes as permanent.

    A thin veneer of resilience info on top of a pile of neurobiology isn’t likely to make the problem with biogenetic attibution go away. I am struggling to explain this to the trauma advocates.

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  • Well, the idea is that yoga studios, dance clubs, boxing gyms, gardening clubs, etc are all doing mental health care better than First Order Psychiatry. So we are going into the Real world and teaching them how to prove their outcomes because they are delivering health care. Then teaching them to write health care grants. And we got a BRSS TACS grant to figure out how to pull ACA money down into these real world organizations by using hospital avoidance waivers, community health worker stuff, medicare education stuff, or other money pots. We are about to teach with the #blacklivesmatter movement from Ferguson to build our St. Louis program.

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  • UPDATE: I posted on how the ACES connection community violated principles of trauma informed care and they banned me.

    Hello, Corinna West:
    This is to inform you that the administrators at ACEsConnection just banned you from their community. This means that you no longer have any membership rights on that community.
    Please do not reply to this email.

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  • I think what needs to be done about is address community wellbeing and resilience. There are robust tools to do that. Yes, the ACE Study is important, but promoting wellness instead of endlessly talking about and debating the impacts of ill health. Why talk about these broken people when you can heal them instead? Can we just skip the ACES conversation and go on to a wellness / resilience conversation? The ACES connection crowd is really heavy on the trauma and pretty light on the resilience. What about reversing that?

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  • So why not promote resilience instead of promoting the biological effects of trauma? If you look at the Resilience Cookbook from the ACES people, their definition of Resilience, is, “Understanding the biology of trauma.” Um, no, there are about 40 ways to build community and individual resilience and understanding trauma is maybe 1 of 40 concrete action items people can take.

    Why do all the talk about how sick and injured and damaged people are and then say, “But you can better if you work on resilience….” And then offer people wimpy and lousy and lightweight tools to promote resilience?

    Why not just use the robust resilience building approach to begin with and skip all the “sick, damaged, biochemical change….” disease mongering?

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  • What I am finding, though, is that the communities that are promoting trauma-informed care are all mental health providers. My thought is, OK, so we all have trauma, what do we DO about it? And if you want to “spread the gospel of ACES” what is the most effective way? Is it harping on biology? Because, I mean, harping on “mental illness” biology did such a good job in helping people have compassion about mental illness, right?

    See my dicussion here on the ACES forum.

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  • In 2011 there was about 2000 comments and I read through most of them. About half were from survivors who told their stories and used some pretty good data in a lot of places. Each one of those 1000 comments were individually composed and relatively unique.

    Then there were another 1000 comments from psychiatrists. Obviously the APA had sent out a broadcast email and most of the docs just pasted in this email without even changing it much at all. They all cited just one article that said, “Safe and Effective,” and that one article was very carefully debunked by all the survivor comments.

    Tell me which weighs more? 1000 carbon copies from Pdicks I mean Pdocs? Or 1000 real life stories from people who have been there?

    I bet the comments look almost exactly the same this year.

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  • I think you have done a lot better job listening to people with lived experience than Alan Francis has. I think that first paragraph that totally miss understands all your point.

    And totally miss understands all the criticism that recovery movement people have been directing to wards Alan Francis.

    The bottom line is the disease model is ineffective for treating trauma and life situations. If psychiatrists can sort out what was a so-called really illness and what was trauma and life situation yes then you can drug the “real illness”.

    but the dsm-5 clinical reviews show that psychiatrists can’t even do that. And the research on trauma, hearing voices, etc shows ‘real illness” is few and far between.

    Another fail for Allen Frances. Some people can’t hear the people they purport to speak for. He needs to take that high horse ear wax out of his presciber fantasy land.

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  • I would be more able to do that if I didn’t have brain injury recovery and very limited screen time.

    He didn’t seem to care about of the references I provided in the first one, so I just did summaries after. Also, a study about belief systems shows that pounding the data can actually reinforce an opposing beleif system. That info is here.

    But please feel free to politely email him any references you think are valid. [email protected]

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  • Someone else, you are right on both counts, both antipsychotics and amphetamines cause psychosis.

    But to add some nuance to your “never” statement , the amphetamines are simply one of 30 animal models for so called schizophrenia. Possibly in higher doses that used for adhd? I mean, to provide performance enhancements for higher curiosity kids who get bored in schools and get adhd labels. And the chart shows that antipsychotics relieve a high level of “psychosis” while causing a lower level of it.

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  • I am saying tighter the binding constant, the more side effects there are. I think the withdrawal syndrome are more difficult for longer half-life drugs p and I think the difficulties depends on how long you were on the drug. I think the return of emotions that have been gone for a long long time is a lot harder than the rebound psychosis. The rebound psychosis you can ride it out without seeing a doctor. But emotions require a skill building process to learn how to tolerate. They are amazingly intense emotions after you haven’t experienced them for years.

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  • The top picture (which isn’t very clear, sorry, shows this. The dopamine D2 receptor binding constant for seroquel is about 100nM, whereas the D2 receptor binding constant for olanzepine, or zyprexa is 3 nM. So zyprexa is likely a lot closer to Haldol in feel. I know I ate the house down on both drugs and couldn’t take either.

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  • Not, not actually, they are separate biological phenomena.

    “Measures of psychological well-being and ill-being were
    signifi cantly linked with numerous biomarkers, with
    some associations being more strongly evident for respondents
    aged 75+. Outcomes for seven biomarkers
    supported the distinct hypothesis, while fi ndings for only
    two biomarkers supported the mirrored hypothesis.”

    Psychother Psychosom 2006;75:85–95
    DOI: 10.1159/000090892

    Note in this study ill-being wasn’t the disease model, it was stuff like anger, isolation, stress, social phenomena.

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  • This was the weakness of the national mental health dialogue project. People equate “mental health” with “Mental illness.” So anything marketing as “mental Health” just draws disease model affiliates. Plus the organizers never connected with the recovery movement except in KC, and no other community replicated our stuff.

    Studies by John Read show that the majority of people still don’t believe the disease model, though. So when you market an event as “mental health dialogue,” you automatically draw only one side of the story. It’s like inviting people to a dialogue on “Pro-choice options” and thinking you’ve covered both sides of the abortion debate. It’s like inviting people to “gun control event,” and thinking you’ve covered both sides of that debate.

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  • I think the reason the trauma concept hasn’t taken hold is that people equate it with abuse and maltreatment.

    But it’s traumatic to be a smart kid. It’s traumatic to have poor social skills, and not everyone gets those innately. It’s traumatic to be a highly motivated person in a get-by world. It’s hard to be an anti-authoritarian, ask Bruce Levine. All of that is betrayal of trust.

    So I was a middle class kid raised by decent parents and I had a whole litany of trauma issues that no one addresses because I was a middle class kid with decent parents. So if we continually speak of trauma as maltreatment, we’re going to keep alienating the middle class people with nice parents, or at least people who think of themselves that way even if it’s false.

    Maltreatment is basically inherent and inalienable for lots of groups in our society. Maltreatment is not one on one, it’s societal. Everyone, take caution of how we talk about trauma.

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  • I know when I am on antibiotics I often have lowered mood. I will be sitting around “awfulizing,” and realize, “Oh yes, I still have four more days for that dental infection….”

    I don’t take prophylactic antibiotics anymore. I like my gut flora. We make a lot of homemade ferments, pickles, sauerkraut, sourdough bread, etc.

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  • You might, instead of just criticizing, point out exactly where you disagree. I see all your comments on this thread and they are just ad hominem attacks. You might also read “answering the critics” first so you don’t start naming the same critiques that have been thoroughly debunked elsewhere.

    So start, name three things incorrect with Whitaker’s stuff. Not just that you don’t like it, what three thinks do you think are inaccurate?

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  • It is my understanding that all types of psychosis (there are over 30 different animal models) showed that the D2 subtype of the dopamine receptors have higher affinity for dopamine. However, what caused the psychosis? Other research shows it’s a protective mechanism for when the brain is overwhelmed.

    I tell people, “If you replace the word schizophrenia with the word overwhelmed, all this will make more sense to you.” The emotional distress causes the psychosis, not the other way around.

    Yes, this is a pathway mediated by dopamine. But that doesn’t give useful information any more than saying that trauma is mediated by cortisol. Or inflammation is mediated by the inflammatory markers.

    Why mess with the dopamine when we can work ont he life situations that caused the problem in the first place? It’s like loosening your belt to cure obesity.

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  • Yes, I got mad yesterday with my comments and took this personally. I don’t think people understand the point I’m trying to make about using the oppressor’s language to frame your argument. And I really dislike being called a “sell-out,” or “co-opted.”

    I do know that “anti-psychiatry” is a term that will block partnership with people who have the money and power. I respect the viewpoint that the system is so broken there is no fix. But that viewpoint, and thus “anti-psychiatry” term, then requires people to find a solution completely on their own. Which is possible, but hasn’t happened yet. Protest, while blocking partnership, while not working for a solution, how is that supposed to help people who have emotional distress to not get labeled?

    Further, it would be very nice if the people who take that protest / independent solution path would stop constantly accusing other advocates of “co-optation” and “selling out.” There are different kinds of advocacy paths, there are different levels of talking to the enemy, there are different levels of being an insider mole, etc. We all have principles and morals and ability to move the dialogue forward.

    If I’m helping people who have emotional distress to not get labeled and the protest types aren’t, at what point is responding to their accusations just a waste of my time?

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  • Ok, You all are right and I’m wrong.

    But, if you’re so right, why haven’t you solved the problem already? Especially those of you with the same complaints and same solutions for 30 years? How come they haven’t worked yet? Think on that a little before you are trying to be against, against, against.

    What are you FOR? What are YOU building? What is your solution excepting bitching?

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  • I think we’re in agreement on the psych drug stuff.

    As far as coercion, I did read David Cohen’s blog but I don’t like to call readers stupid. Also, I don’t think he addressed all the issues. I’m not an expert in the forced med area and don’t plan to become an expert soon. So I won’t dissect his blog point by point. Our movement does enough wrangling about this so leave me out of that discussion, please.

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  • My definition of “anti-med religion” is anyone who says there is absolutely never a benefit to “treatment.” It’s false science just as those who insist there is absolutely never any harm during “treatment.” I classify both ISEPP and Breggin with “medical harm aware.” They both admit some benefit to “treatment” in very rare cases.

    I agree fully informed consent is needed. I have not finalized my opinions on forced treatment. 98% of treatment is “voluntary,” or would be if people could make real choices. So yes, Frances is right that arguing about 2% is a paper tiger, if this was an isolated isssue. But he doesn’t understand that the people arguing about the 2% are using it to make a whole bunch of bullshit false claims that confuse people when making decisions about the 98% of “voluntary” mental health care.

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  • Jonah, you are right on this. I should have examined his paragraph closer. I was getting tired. I know jails like to label people so they can give them behavior control meds. Also, my one friend tracked down a bunch of data in Missouri showing jails were billed for 60 minutes of therapy but only delivering 5 minutes. Corporate racketeering stuff.

    The funny story on this is that the jail lobby mafia sent a couple big ex-cons in a high dollar car to beat up my friend, Edward. Edward said the tipoff was when the ex-con said, “Why are you messing with US,” plural.

    The dude starting smacking Edward, who was still walking with a cane after an accident falling out of a tree with a chainsaw when he was pruning at 3 am during a high energy [manic] phase.

    Edward just smacked the dude back with the cane, expert like, and said my all time favorite come-back line. “Well, if I’m going to the ER today, you are going to come with me.”

    The mafia dude left. That one jail contractor lost the 2 million dollar contract. I’m sure by now someone else picked it back up and resumed the BS.

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  • This and Alex’s comment is a good point and also the way I used to feel. After the Carter Center symposium I decided to just ignore the professionals and go it alone.

    After all, we can help one person who wants help in the time it takes to help 10 people who don’t want help.

    But in the meantime, in the last two years, I’ve had a spiritual emergency, traumatic brain injury, and 34 re-concussions including two this week that delayed my response to your worthy comments here.

    In that time, my personal spiritual guidance has been to sell “mental illness prevention” and “graduating a need for services” to the mental health providers. I am not clear on why I’m supposed to do this or how.

    Your guidance may be difference if you have such. Your path may be equally valid, to continue protest approaches and to continue to raise awareness and fight injustice and speak truth to power. All approaches are useful. There are many types of advocates.

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  • Please stop saying “medical model.” I like the term “disease model” better. It takes power from the oppressors instead of giving it to them.

    I think we can study other social change movements and see how they have built different approaches. The bike pedestrian community has come a long way, so has the LGBT community.

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  • One thing to be careful of is that all the spiritual traditions have methods for safety when engaging with the spirit world. There is quite a lot of risk in combining lots of traditions, or picking and choosing various parts of traditions, or using a tradition in which you are not well trained or not under the protection of a teacher.

    In my case, a pagan or nature spirit type person did this improvised oak tree sage burning ceremony with me last year. It made my spiritual emergency go from a little bad to overwhelming. I had accidentally communicate the wrong message in the spirit world, that I wanted to work in the spirit world, and I had not teacher and not enough a spiritual community. The wrong approach carries quite a lot of danger.

    I don’t know what is the right or wrong approach, but I’m just saying don’t go in thinking that there’s all benefit with no chance for harm.

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  • I also dislike the pop ups ads. They hassled me even after I’d paid.

    Here are my suggestions how to monetize the blog:
    1. Google ads. You can rule out pharma and nutraceutical companies or any other hucksters like ECT promoters. My friend made $250,000 a year off two sites. Just monitor and keep banning the offensive advertisers.
    2. Charge for “mental health fair trade” certified doctors. Get doctors to pass a test on the data on this site and certify them, them make a listing so we can find decent docs. Charge a nominal $5 fee to search the doctor database.
    3. Conduct an online peer supporter training to teach peer support then add a portal where people can connect with advocates like me who can volunteer or charge nominal rates for peer advocacy work. Charge a $5 fee to search the peer database, charge us something nominal for the training process, and you can also keep a percentage of each peer interaction fee if you have a portal to do that.
    4. Connect with the e-patient movement and teach the advocates in other medical areas what the real deal is with mental health. E-Patient Dave and Regina Holliday are two leaders.
    5. Run a speaker program so any of the rest of us who know our stuff can do public appearances and you can take a cut of the gig booking fee, plus our speaker certification fee. I’m sure you get a ton more speaking requests than you can handle. Many of us know the data too, and have different spins. I.e., I’m artistic and can touch hearts, Will Hall is super compassionate and a good wordsmith, Monica Cassini can speak about natural
    wellness stuff, etc.
    6. Apply for grants like the Arnold Foundation and the Commonwealth Foundation that work for research integrity, or get a Health Impact Assessment grant from the Robert Wood Johnson Foundation to see what our input on a pending public policy decision would be.
    7. Enter Patient Centered Outreach research intitute’s matchmaker challenge. Match our advocates with researchers looking for patient input. Charge researchers a fee to connect with us. Charge us a nominal fee to certify as “research input ready,” to be good advisors to academics.
    8. Build a medication reduction module to sell to mental health centers. The kit would include training for peers, staff, and service recipients to safely come off meds.
    9. Include surveys on the site to start solving some of the important research questions in mental health. Like a survey on how recovered people shed their disease identities, or what makes effective advocacy work, or what really works to help people become open minded to the data on this site. Sell the raw data to academics who will write it up for publication.
    10. Dating service. How many psych survivors marry each other?
    11. Humor – Ask Chato B Stewart to do comics for us making fun of people we can’t reach otherwise.

    That enough for now?

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  • I’m an ECT survivor. It took me years to recover my cognitive function after those treatments. Some never do, and those stories are rarely mentioned. People don’t get informed consent.

    After recovering from a traumatic brain injury, I realized just how similar the process was from recovery from ECT. I think that ECT works by giving you a brain injury to take your mind off the depression.

    I’m sure that a “little electricity” for a long time isn’t much better than a lot of electricity in the short term. These researchers oughta test this stuff on themselves if it’s so safe.

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  • What I have found after becoming just a bit too familiar with brain injury is this:

    1) Lots of people with brain injury get sent to mental health care because people have no idea how to handle brain injury

    2) Lots of psych treatments causes brain injury: ECT, benzos, antipsychotics and SSRIs among other stuff.

    3) Wow this is a self-reinforcing circle now, with psych patients getting brain injured and / or traumatized (which presents much the same way) then getting more psych “treatment.”

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  • My friend Ed Duff talks about how the NADA people came to Joplin after their nasty tornado when thousands were wandering around traumatized.

    I myself also used it once when I was at a “peer” conference that the state took over and kicked me off stage as I was just processing grief that had been delayed by psych meds. I was in this mess of emotional turmoil and Ed needled me and totally settled me down.

    My only question is, “Why only use 5 points when the whole body is full of points?” I’ve been using acupuncture for my brain injury. My very first visit I had just been yelled at for two hours by the ER for demanding a scan for a potential brain bleed. The ER thought my injury wasn’t severe enough but two ER doc friends had told me to get checked out. I walked out of the ER and into the acupuncture clinic, in so much pain and trauma and turmoil that I could barely talk. It was hugely settling and relieving. Great stuff. Good data on it, too, that NADA has.

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  • This is just a matter of who you talk to when you feel lousy. If someone has an extreme emotional experience and talks to a psychic, some church folks (not all), Star Trek fans, civil war re-enactors, home-brewers or other weird people, they are just one of the crew. And I mean weird in a complementary way just like on However, if someone in distress talks to a doctor, they’re ill.

    In this case, using pain for pleasure or for emotional regulation (different, I know) is probably only an illness if you talk to the wrong people. The bdsm people have a super rich history of discussions along these lines. Alot of which are how not to cause permanent harm during one’s sessions. The best can be found on Don’t ask me why I know this, I just learned it from a little birdie somewhere.

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  • Well, it actually is pretty absolute. D2 was connected to every single animal model of psychosis. They did a lot of work to rule out a whole lot of other neurotransmitters. The article was a huge splash in the research world, 212 citations in PNAS, one of the most prestigious journals.

    As far as how this is useful to advocates who want to show emotional distress is temporary? I tried to do a blog about this once but think I need to do a better job about it.

    There’s always going to be mechanistic basic sciency type researchers. The trick is not to give them 98% of all mental health research dollars, something Seeman mentions in several articles, explaining that the search for a gene is a bust. I guess that’s where advocates come in, redirecting the billions of research money being wasted on stuff that doesn’t help us.

    And I’ve got to bow out now because I gave myself another re-concussion stepping down into the driveway to go to the dentist two hours ago. So this is my last pitch of something electronic as I’m sliding back down into that pain and dark and confusion land. I’ll probably be AWOL the next couple of days, sorry.

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  • Dr. Seeman and his wife gave me permission to post this:

    On Wed, Oct 16, 2013 at 12:25 PM, Philip Seeman wrote:

    Dear Corinna,

    Mary and I are concerned about your brain injury now causing you to stay in bed and spend much time on the phone rather than being up and around.

    Thank you for sending me the conversation going on in MadinAmerica, very interesting.

    Your explanations in the conversation, Corinna, are excellent and clear, so there is not much that I can add at this time.

    “madmom” does ask a very important question that I would like to answer, and you may wish to modify my reply in the language of survivors:

    This is a very important question. Namely, “If it’s true that dopamine supersensitivity is the cause of ‘schizophrenia’, why are we giving individuals a class of medication that causes patients to develop more dopamine receptor sites which has been argued, makes individuals more sensitive to psychosis?”

    In reply, and in short, the answer is that the antipsychotic medication is given to get over the acute signs and symptoms in a service-user who may be actively hallucinating or delusional, and may be a danger to herself/himself or others. [If they are not able to access programs like Soteria or Open Dialogue that could handle the initial separation from reality. My edit -CW] The “acute” time period may be weeks or months in order for the overactive dopamine system to settle down, after which the antipsychotic medication can be gradually reduced to as low as possible (unless there is further stress). Because antipsychotic medication can itself add somewhat to the dopamine supersensitivity of the service-user individual, this is why it’s best to gradually taper and reduce the medication, in order to prevent a rebound worsening of any psychotic features.

    Best wishes, Corinna,


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  • It’s not aid and comfort to the disease model. It’s a very subtle, politic, effective way to tear down the disease model.

    As far as focusing on dopamine – it’s because that mechanism is the ONLY mechanism common to every single one of the life aituations that cause a separation from reality (in animal models).

    Here is a metaphor that might explain the difference between mechanism and cause. There are many many life situations that cause bleeding (fights, self-harm, menstrual cycles, the brain clot I gotta watch out for, dog bite, etc.) However, each of the enzymes in the clotting cascade works by one specific mechanism.

    There are life situations that cause psychosis. Seeman is saying that the D2 supersensitivity is like the clotting cascade. It’s a protective mechanism to keep the brain from further harm. He is on our side, folks, but he has to speak the research disease model language to get published.

    This is again why it’s important to distinguish between saying “medical model” and disease model. Everything is biochemisty. But not all emotional distress is a disease.

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  • Read the blog on “why anti-authoritarians get mental health labels.” We’re testing you. We only test the ones we think have potential. It’s a compliment. If you prove trustworthy, it will be easier from here on out. We have to test you because testing what authority figures say is what saved us from a life of psychiatric oppression. We respect your right to learn and grow and change your mind as long as you are honest about it.

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  • Yes, I was there for that Alternatives rebuttal / riot. I think all people who read Whitater’s stuff go through a period where they want to rebut it. I was in that exact stage myself at that conference till I got to talk to Bob and look more at the data myself. I have a blog about why psychiatrists have a much harder time accepting Bob’s data than people in recovery.

    Some of the points were good, like 10 reasons people besides overmedication that people don’t recovery. But at that talk Ragins didn’t really address the data Whitaker uses because he said he hadn’t real the whole book yet. Funny, trying to rebut data you don’t know. Wait, that’s what the vast majority of pychiatrists do every day. Sad that most pyschiatrists don’t even know the academic literature in their own field.

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  • I would say that we can talk all we want to people who don’t want to hear us and pretty often it’s wasted energy. If, instead, we put this energy into speaking up in more neutral forums that are set up to validate our point of view, a lot more good advocacy work might be done.

    How many Boston people went to the full day dialogue this Saturday? I emailed and Facebook invited and phone called my 10 Boston friends despite my brain injury which makes communications hard work still. Guess how many responded to me? Instead we’re going to get all het up and make 60 minutes feel like their show was successful because it gets a lot of feedback. How many other 60 minutes show on how many other topics tell just one side of the story? It’s always a one sided show.

    Why waste our time on people who don’t want to hear us? Instead, lets get out there and participate in those forums where our input is wanted and they are set up to handle multiple opinions.

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  • I tried to understand the logic of the people who say, “Massive supplements and chelation therapy can cure both autism and mental illness.” I worked with one lady real hard to track down the science and kept running into dead ends where she couldn’t explain stuff. Anything she couldn’t explain, she said, “Well, that’s a conspiracy theory. The powers that be are hiding that data.”

    Here are some real simple scientific questions to the supplement and chelate advocates:

    1. How do you think chelation or detoxification works? What toxic thing is being removed and by what mechanism?

    2. How does the chelation or detoxification agent tell the difference between heavy metals like mercury or lead which are harmful are light metals like calcium and potassium and iron which are needed? How does it not strip those metals (which have the same electrical charge and are thus very similar chemically) all out of the body, too?

    3. Why do we say that emotional distress doesn’t have a chemical fix for pharma, but it’s OK to have a chemical fix for a naturopath? Like, why not look at life situations?

    Now, I’m not denying that some people got sucked into the mental health system due to a vitamin deficit. But it’s a small percentage. And also, I know the standard American diet is pretty deficient.

    But I always say, before you worry about a whole bunch of micronutrients (vitamins), look at macronutrients (carbs, proteins, fats, etc.) Tons of people don’t eat protein in each meal and then wonder why they are crabby, hungry, depressed, etc. Just start adding some protein and veggies to your meals and don’t get suckered into the megavitamin scams.

    How to tell a scam: 1) they say the solution is simple or easy 2) eveyone gets the same solution 3) the solution is fast 4) the solution must be the correct brand name

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  • Can you make up a more reali sounding fake name? Unfortunately I haven’t been able to spend any time on that website yet as I’m still recoverying from a traumatic brain injury and computer use is still somewhat painful. I’m glad you’re on top of it.

    You might refer Mike to this video showing that they should specifically be looking for our perspective.

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  • Awesome post, peoples. My partner for the UnDiagnosing Conference, Paul Komarek, is also working on spreading mental health as something anyone is qualified to talk about. “It’s no harder than recovery from addiction,” he says, “and people talk about that in their community all the time.”

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  • When you say “I don’t like the medical model” people think you don’t like science. The obvious next question is well, what model do you like? It’s awfully hard to be against something as an advocate if you don’t have something different that you are for. If you don’t agree with the points I made in my post it might be useful to point out why not so that we can dialogue and come up with language as advocates. Using the language of the oppressors is a losing argument for us.

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  • You would avoid all the confusion by saying disease model instead of medical model.

    It’s hard to figure out when you say, “We believe in the medical model but we don’t believe in it and we want to move beyond it.”

    Try this. Social messaging is really important. “We believe in a scientific basis for emotional distress because all emotions have biological components. But we don’t believe that people who get labels have a “disease.” It a normal response to an abnormal situation.”

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  • This story is all over You-Tube, too and it made me so sad I couldn’t watch the whole thing. I remember seeing this letter to Oprah a few years ago and thinking that this list of suggestions was great. So glad to see it re-posted here.

    It’s sad to think how many creatives, spiritualists, or entrepreneurs in our society are being snuffed out by this stuff. I’ve had to do some grief work around this off and on. What’s helped lately is a Bible verse from Jeremiah about “He will restore what the locusts have eaten.” [No offense meant to Non-christians] Much of what I’ve lost to psychiatry has now been restored in my life. Hopefully we can build a way to do this more often for our brothers and sisters and step-children like this in bondage.

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  • Oh, Duane, that is such good news! I do so love being a bicycle evangelist. I was doing a Bible study last week with a friend and he says, “Knowing Scipture is the way out of bondage.”

    I said, “All my communities say that their thing is the way out of bondage. The Judo people say Judo is magical, the bike people say the revolution will not be motorized, the poets say our art can change souls, the gardening people say just eat what you plant….”

    And my Bible study friend said, “Well, they’re all right. Those things are all ways out of the trap of our culture.”

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  • Do you know where we are right now? Where tobacco was after the surgeon general’s report that it causes cancer. Everyone knows there is a problem. Very few know there is a solution.

    What was the solution for tobacco? Raising cigarette taxes so that tobacco companies couldn’t externalize the cost of their pollution as much. Same solution as for stopping big oil, big agra, etc. Add up all the toll of a psych med.

    The $20 billion in settlements so far was just money paid to medicaid. They also need to pay for the cost of early deaths, lost time in the labor force, disfiguration, cognitive damage, our ability to have children and spouses, many of us. They need to pay for all that. And then they’ll be done, and they have won. Because cigarettes keep selling because of illegal developing world marketing, but also because it feels good to smoke. But very little about psych meds ever feels good.

    So sorry if Tina Minkowitz already wrote all this in her reparations post. I haven’t read that one yet.

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  • I heard one of the reasons that Ernest Hemingway died by suicide was that he got ECT and had cognitive damage where he could no longer write. As a person who wrote for a living, that was a pretty serious bummer. Screw the American Psychiatric Association and NIMH for hiding the research on cognitive damage all these years! I’m an ECT survivor. I would love to give the APA ECT promoters a plate of brains like some protesters did to Max Fink a while ago.

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  • Maria was just quoting a statement made by a certain church. I think she’s pretty open to anyone who knows how to help, see her post about including all groups.

    But as far as coming off medications, it’s not always helpful to contact a doctor. The biggest study ever done on this, by Mind UK, found that doctors were the most unhelpful support people of all through this process.

    As far as first episode psychosis, I would think a peer specialist could do a lot more help and a lot less harm than a doctor, and as far as I know, this is what Bob advocates for, a Soteria type process or Open dialogue or several other models that delay the use of medications and take a good look at life situations.

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  • Sorry about the delay, I was challenging myself to see if I could manage my workaholism by leaving my computer off through the holiday. I mostly did it.

    I typically don’t describe myself as an anti-psychiatrist. The word has been used too often by establishment types to discredit peers by trying to lump us in with protest-only groups that don’t have any reform ideas. Sometimes I feel like “anti-psychiatry” is the “N-word” of our movement.

    I like the term social entrepreneur to describe what I do, because my business is about making change as well as making enough money to make the business self-sustainable. Some of my earlier post define this term, show the characteristics of social entrepreneurs, and encourage people to look in this direction. I just find that most people don’t know this term so I don’t always use it.

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  • Maria, Maybe ISEPP can be the organization at the top that coordinates the three type of advocates? Although we would need to be 100% sure that we have enough input of peers. Most of us don’t want professionals telling us what to do any longer. This might include not scheduling your conference the same week as Alternatives.

    As far as lupus, one of the board members of my business had drug induced lupus:

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  • To be honest, I forgot about them. I think they claim to be working for human rights, so they would go under that area. But we might have to different between people who see mental health “treatment” as only harmful in absolutely every case like they do, and people who admit that there is some help sometimes along with the harm, as Tina does.

    I think it’s probably just as false to claim absolutely no benefit to our current paradigm as it is to claim there is absolutely no harm to our paradigm, as most disease model people do.

    Where would you put the “anti-psychiatrists?” And how would you define that term, anyway?

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  • I think the lower birth is mostly likely explained by the fact that existential crisis, which is what most often gets labeled at mental illness, happens during peak reproductive years. Also, society’s views of those labels tend to limit reproductive options.

    I think this article does show how stupid these authors are, but is it relevant for a few reasons. Maybe when our site hosts post this stuff they can point out what they think is interesting and how it supports our views?

    I have noticed that when I go to Alternatives type conferences that there will be like 3 kids in a room full of 1000 people. I feel like it’a post apocalyptic sci fi novel and like maybe those 3 kids are our only hope to keep civilization alive.

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  • Suzanne, I had to put words to this at one point when my stepdad and I did a presentation together at a family group that was pretty disease model focused.

    One point my stepdad had kicked me out of his house. Later I realized it wasn’t that he had given up on my recovery. He had to give up on HIS ability to help me move forward in my recovery AT THAT TIME. I think this distinction is very important for families to have words for.

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  • Do you have some data about the consumer leaders selling us out? I remember you mentioning a letter from way back, someone who knew “how to handle the radicals?” I come from Missouri. Our slogan is “Show Me.”

    ‘Cause I think you may have missed the whole point of this post, which is that criticism and nastyness doesn’t get anywhere, really. So it’s time to find another way to talk to people who can’t hear us or just give up on them and move on and build our own solutions.

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  • One of my husband’s favorite stories is about this libertarian dude who tried to talk sense into the Republican party. Like pointing out the Spanish speaking people are typically socially conservative, entrepreneurial, religious, and family oriented, things that would trend them toward being Republicans if the Republicans would just stop bashing immigrants.

    This dude was once in room full of consultants giving a talk about improving political advocacy and getting stonewalled. Finally he realized, “I was talking about eliminating the middleman to the very middleman I was trying to eliminate.”

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  • I’ve been trying to figure out for a long time what motivates the forced med people and it’s still a mystery to me. Money, fame? Some people liking being a troll and stirring up other people’s anger just so they can argue? People genuinely thinking that meds help and forced meds are helpful? People who are fooled and don’t look beyond the surface?

    I will tell, whatever their motivation, they are very good at using their social media channels, traditional media, email newsletters, public hearings, etc. to spread their message. We need to step up our own skills in this area to spread a more honest message.

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  • My comments:
    1) If the people who decided to taper were at 75% of their original dose after a year, this shows how tough it is to taper, and how careful doctors need to be when starting these meds.

    2) It would have been interested to track outcomes on the no change in dose people, too. I would predict they are in between the other two categories.

    3) The group who stopped abruptly regardless of the danger you probably warned them off probably didn’t listen to you much. The group who didn’t want to taper at all who probably couldn’t hear your message either. So maybe the group who did the best, the tapering group, might have improved because that was the group with the best therapeutic alliance.

    4) The death due to natural causes, was that one of those natural 18 fold increase in heart attack risk natural causes that our people have? Fred Baughman says you can tell because people die in their sleep when folks typically don’t have heart attacks. Don’t answer, this is a HIPAA violation probably, but I just wanted to make that point, too.

    5) What did you learn? What do you want to do differently out of all this? What do you think other doctors should do?

    6) How can we can all doctors to track their practices like this? The journal Frontiers in Psychiatry got me to agree that we can do a whole special topics edition on med withdrawal if we can come up with enough researchers and articles. They said they’ll pay for the open access fees and I might put together a Medstarter crowdfunding project to pay for salary support for those of us who would need it to make this project happen. This is my preliminary announcement of this project, call for researchers, and call for articles. Email me at Corinna@WellnessWordworks dot com.

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  • One of the issues making drug development hard is that there aren’t clear endpoints for clinical improvement. How do you define “better?” If you look up that sentence on You-Tube you’ll find a powerful video made by a certain church I that refuse to ally with.

    Is “better” working full time, debt free, off benefits? I guess 47% of Americans wouldn’t fit that. Is “better” lack of symptoms? Is “better” having a dog rolling on her back and itching herself and moaning and groaning, then chasing her tail, so I can laugh? Or a good life in general?

    I know clinicians have rating scales and some peer researchers have found those meaningless and have their own improvement scales. And SAMHSA had a huge debate on the definition of recovery. But pharma can’t make heads or tails of all this so they want to work on drugs with much firmer endpoints.

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  • I don’t think that decisions about working, coming off meds, choosing or not choosing labels, or anything about a person’s “treatment” need to be made by anyone but the person.

    In a way, this is why a business model is best. How many charities like homeless shelters use restrictive rules to weed out their customers? What if their funding came entirely from the customers so they had to provide better service? Often being a purchaser gives people incredible dignity compared to third party funding. And a well designed model can account for people who can’t pay at the time using barter, trade, volunteering, or sliding fee scales for using more affluent customers to help fund others.

    However, I don’t think a voluntary system forces anyone to move on from supports before they are ready, except for government funding limitations that are totally out of my control.

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  • I am thinking of handling crisis on the model of People post profiles if they can host people, with what amenities or limitations they might have. The user surveys I’ve done show that about 1 in 10 peers have done or are willing to do this. I’ve gotten suggestions about what needs to be covered in the training process.

    I too would have my profile posted, so mjk, if you were in Kansas City, Kansas and knocked on my door and were safe to be around my kids (my call – I’m not too strict), then I could invite you in. Pretty soon I’ll have Google Fiber so you can enjoy the 100 times faster internet. Plus the neighborhood is really historic and quiet and transit accessible.

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  • Thanks for the question, Ted. Here is an earlier post I did answering why we need a business approach – to make it expandible:

    Right now our peer support approaches are funded by charity and government. Charity funding is only 4% of the US Economy and grant writing is tough. Government funding is dominated by hospital, jail, nursing home and pharma lobbies that want to keep the lion’s share of the funding. So we need to look elsewhere for funding if we want our programs to grow to reach the whole population.

    We are a social business as defined by Mohammend Yunus, who won the Nobel for expanding microlending. Normal corporations seek to maximize a return to shareholders. Social businesses, according to Yunus, provide no return to shareholders. Any excess profits are used to grow the business or simply return the original investors’ funding.

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  • I know someone who knows a doctor who passes out a ton of pain pills. The patients call him a candy man. When my friend asked him why he kept writing so many scripts, he said, “Well, I just want to give them the benefit of the doubt.”

    My friend thinks the doctor does it because all the addict patients come in and say, “Oh…. you’re such a good doctor… I love you so much, Dr. J.” This guy got investigated by the FDA but I don’t know what came of it. It’s easy enough to find out which doctors are candy men and women.

    Just like it’s public knowledge which docs prescribe the most antipsychotics.

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  • Well chocolate would be on the bottom left of the chart for sure. Not too harmful, and not too hard to control, for most people. Of course everyone is different, and I know people who can’t keep chocolate in the house.

    But the point of the chart would be to show that psych meds are closer on the chart to heroin and cocaine, both harmful and hard to control.

    Also pot would probably be closer to the bottom left. Therefore taking on both big pharma and the war on drugs at the same time, since both come from the same phenomenon.

    Yes, it is a silly and fun and irreverent approach, which is part of why it works. Thanks for the apology on the tone – the Chocolate Fairy is a prankster of course, so will rub some people the wrong way.

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  • I am not 100% sure I’m comfortable with this blog series. All of us discussion what the person should do without their participation feels like grand rounds to me.

    I did look at the Rxisk site and it seems to have great potential. I’d like to put together an infographic and the site might have good data to put it together. I’d like to graph all the prescribed and non-prescribed drugs our societies use and show harm vs. dependence. I have a Chocolate Fairy project where my character says, “We all use drugs, so we might as well pick the ones that harm us (personally) the least and that we can control the most.” But where do people get this info?

    Does anyone want to work with me to make a chart of drug harm vs. dependence for all drugs? Including sugar and caffeine and chocolate and psych meds.

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  • Hence the importance of the “Unschooling” movement or this chance I described in the blog for freelance research careers.

    I’ve tried to talk about four friends out of grad school already. Some success, some not. People think school is still the path to good life instead of the path to heavy student loan debt, irrelevant indoctrination, abuse from status quo adherents, and jobs that suck anyway.

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  • Yes, Emma, you are right. I thought I defined it by saying, “it’s a huge subsidy to pharma and a waster of taxpayer money.”

    But I should also have said, “It’s theoretically taking research data and shepherding it all the way to clinical applications so it actually helps people with health concerns – the ‘translation’ from research into practice.”

    My researcher friend told me that most researchers define it as, “A sexy way that helps me get grants to describe the same exact research that I’ve been doing all along.”

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  • This is a super awesome series of questions and I’ve been wondering much of the same things myself.

    I liked when Bruce Levine said that most folks with mental health labels are antiauthoritarians. That means we don’t trust authority figures unless they have proven they are honest, listen to us, and have our best interest in mind. I know much of the questioning of mental health providers on this site is because we are testing them to see if this is true.

    Maybe more mental health providers would be welcome if we had some of “Whitaker Certification” process where people would be tested against Duane’s list of criteria or some other fairly standard criteria. Then we wouldn’t have to individually test or challenge each provider that comes on this site – we could just check their “Medication Optimization Awareness” (or whatever we call it) profile information.

    Also, it only takes 12 doctors to make a board, so maybe 12 docs could make a “board certification” on “Truly Informed Prescribing” or “Temporary Emotional Pain Management” (or whatever we call it). Then it would be much easier for patients and doctors to connect. My mom is a doctor and just took the board exams in family practice and all of the questions lead to a pill instead of a preventative chat. So we need better board certification processes as well and only takes 12 docs to get this ball rolling.

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  • It’s not a culture of death, it’s a culture of desire, comittment, sacrifice, and determination. I tell what is a culture of death. It’s when you ask labeled folks, “What have you done that is fun lately?” and they don’t have an answer. Or “What are you passionate about?”

    Or all the people on Facebook who post about their jobs all the time and never talk about anything else at all.

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  • How can we make the CEO’s of these companies personally liable for the deaths and misery with jail times and loss of jobs? Not golden parachutes. This is how we’ll get this stuff to stop. Lawsuits and jail time for every complicit person who knew they were harming people. Like the Nurenburg trials.

    I know GSK made a lot more than $3 bill in profit so this is still just a cost of doing business unless there are penalties for someone besides stockholders and taxpayers.

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  • Fun is what’s missing in mental health. I had fun with a business plan proposal and the judges chastised us for not taking this seriously enough. Yet in my work as a peer specialist, I’d ask people, “When the last time you have done something fun?” and the answer would be weeks ago if at all. That’s really the crux of the issue for many people who are stuck with labels and medications.

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  • Stephany, the way our site would work is that you would post articles and if people liked them, they could call or book appointments with YOU. You could charge whatever you want, including $0. Then you could help people escape the mental health system as your own business model.

    Our business would take a small hunk to stay afloat, pay our programmers, and keep growing the business. It’s going to be a network of all the psychiatric survivor bloggers who want to maybe start earning a living from their blog. It will also have very open and honest financial disclosures so you can see where our money is coming and going.

    I went to an incredible event last weekend called Startup Weekend and got free help for three whole days from programmers, mentors, legal advisors, and business people to come up with some mockups.

    There are Startup Weekends all over the world – You should pitch an idea to them, too, if one comes close to your local community, or drive to one. Many of the participants here in Kansas City’s Startup Weekend came from out of town.

    I think we’ve been waiting for 40 years for government and charity to bail us out and it hasn’t happened yet. Do you have any other suggestions how to eliminate the current system and build a new system? And non profit models just aren’t as sustainable as those which can pay their own expenses. It will be important to use some kind of scaled or barter system to make it affordable for people who can’t pay.

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  • ALT,

    I am not so into beauty cream either, and I’m aware of the claims that some sunscreen ingredients cause cancer. I have not investigated whether or not the reduction in cancer rates from using sunscreen is greater than this or not. Right now there are so manly inaccuracies in health care messaging that I’m mainly focusing on mental health messaging. I agree that a “lightening cream” is a pretty racist product.

    However, there are other products in Prahalad’s book like prosthetic limbs and eye care that might be less morally offensive to people who object to capitalism itself. I agree that capitalism has caused many problems, and this is mainly because corporations are currently judged purely on their monetary return to shareholders.

    A social benefit corporation, however, according to Mohammed Yunus’ definition, does not make any return at all to the shareholders. Instead, it’s judged by it’s contributions to the well-being of customers, employees, community, and other stakeholders. Six states in the US have a B or benefit incorporation law standing, and certification is available that rigorously checks the impact on all these groups.

    Other products have been provided using social entrepreneurship to allow a much bigger expansion and service area: clean water, sewage recycling, generic medications, vitamin fortified yogurts, therapy that does not rely on expensive professionals, and social services provided by community members that solve root causes of poverty.

    Of course, this is why I am doing an extensive pre-launch investigation of our model and our product. Social entrepreneurship is a difficult concept to explain to many, but good programs produce very transparent results and numbers.

    We won’t be able to expand effective programs by relying on handouts from charities and governments. Conversely, services that are so expensive that we must rely on handouts are probably way too complex, labor intensive, and outside our regular communities to be effective.

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  • SA and Belinda, my thought is to find people like you who are mental health “escapees”, complete graduates from services to share their stories with a little reimbursement for their time or the chance to volunteer, whichever you prefer. This is slightly different that the “obedient consumers” that mental health centers sometimes recruit to be peer specialists.

    If someone contacts a supporter on our site that acts superior or all-knowing they’ll be free to leave a poor review score just like on Amazon. People can choose whoever they want to talk to based on what part of the profile interests them. People can find help for medication withdrawal, employment, spiritual needs, help getting undiagnosed, or building physical health (the number one most requested service.) 74% of people said they wanted face to face interaction, and 54% said they wanted to spend time with shared hobbies, out in the real world.

    Our job is not to get people into the mental health system, it’s to get them out.

    The best way to do this is to help people find their own natural supports, like PTA meetings, sports clubs, gardening groups, church, activism, whatever works for you, as an individual. People who are heavily entrenched in the system often have lost these. Our primary customers are people with only 1-2 unpaid people in their lives who will listen carefully to them.

    Most people using this online forum are beyond this place and are more likely to be our potential staffers, people who can list a profile and earn money any time they might already be online doing something. Or volunteer, if that will create the most mutual interaction and you are willing to do this.

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  • Yes, business ethics are an important concern, and there is a lot of variation in social entrerprise. It ranges from “ethical” for profit business like Ben and Jerry’s or Whole Foods or Seventh Generation cleaning products. On the other end are more grant based businesses that have some earned income. I plan to define my business according to Mohhammed Yusuf’s definition of social business, where no dividends are ever paid to shareholders.

    I also plan to certify as a B corporation, B for benefit, which is available currently in 6 states. This process rigorously takes into account the corporations impact on customers, employees, community, and other stakeholders.

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