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.
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.
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 Right Care Alliance got a $2million grant from Robert Wood Johnson Foundation to address over-treatment. Their slogan is the “Right Care for the Right Person at the Right Time.” They did pretty cool work including a whole special issue in the Lancet about this.
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.
I really like this post. I’ve sat in a lot of meetings and got blacklisted for having an opinion. It’s spot on. I don’t know why people commenting are pissy, I bet a lot of them haven’t sat in those meetings.
I am starting to think that sitting in those rooms is pointless, but at least I tried. At least I earned my exclusion.
This is another important article in mental health nursing: basically saying why and how it’s hard for nurses to learn about recovery. But once they do, they can’t go back. blue pill or red pill moment.
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.
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?
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.
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.”
I don’t understand why he doesn’t just run away? There are various points at which the psychiatrists have him on leave. I’m sure a bus ticket, train ticket, plane ticket, etc, could be had during those instances.
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.
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.
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.
I’m working out a plan to steal the First Order’s money from their funders. We’ll see how that goes…that might be one more strategy for you to write on.
Tell your friends in our part of the country to apply for our sponsored advocates program. We pay them to help nonprofits work through a Wellbeing Impact Assessment process. http://poetryforpersonalpower.com/advocate-sponsorship/
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.
MEMBERSHIP BANNED
Sincerely,
ACEsConnection http://www.acesconnection.com
Please do not reply to this email.
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?
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?
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?
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.
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.
It won’t be too hard to make a little miniature washing machine type thing filled with O.1 Molar hydrochloric acid and maybe some pepsin. That would fake the pill out nice and snappy. Or just try any bowl of strong acid first.
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.
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.
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.
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.
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.”
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. http://www.creatingcommunitysolutions.org/
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.
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.
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.
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?
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.
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.
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?
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?
I just see Allen Frances promoting his theory, exactly the same it is was a week ago without any revision at all from the multiple responses he’s gotten over the last week.
And our people are responding again to his now outdated theory, but no one is responding back to our people.
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.
I don’t like the term “anti-psychiatry.” I prefer the term “medical-harm aware advocate.” It squarely indicates both the source of the problem and the solution. See my blog here a couple of days ago.
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.
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.
My concern is that the perception is different, that anti-psychiatry is perceived as anti-science. This is why I prefer the term “medical harm aware advocate,” because then it point clearly to both the cause and the solution of the problem.
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.
The best website I’ve found on recreational drugs is Erowid.com. I think you are right that illicit drugs and psych meds have similar mechanisms of action. If we could make a table for both the psych meds and the illicit meds that listed potential harms on it, that would be a valuable graphic explanation. Like this: http://medicalmarijuana.procon.org/view.resource.php?resourceID=004477
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.
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. http://corinnawest.com/spiritual-emergency/
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.
I like your poem, and your story, and your friend’s story. I was inspired by you long ago when I read your story in Firewalkers. Thanks for talking to me last month. You helped me realize I can give myself time for healing instead of competing with other people.
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.
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.
These people want to “talk about it.” Be nice to them, they’re my local friends that just need a bit of education about how to move beyond the disease model for emotional distress. Email the story to [email protected].
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.”
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.
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 http://nerdighters.ning.com 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 http://fetlife.com. Don’t ask me why I know this, I just learned it from a little birdie somewhere.
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. http://www.pnas.org/content/102/9/3513.long
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.
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.
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. http://en.wikipedia.org/wiki/Coagulation
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.
Give your stepdaughter my phone number. It’s on my website. I’m still in bed lots recovering from brain injury with nothing to do but talk on the phone.
Seeman is saying that all stressors that cause psychosis have this common path for how they work. All those types of life situation stressors cause D2 supersensitivity. This is not dopamine as cause, it’s life situation as cause, and dopamine as mechanism.
The thing he’s saying is that every life situation cause has this one physical mechanism in common. I don’t think Seeman mentions child abuse because you can’t study D2 supersensitivity without dissecting the brain, thus he’s only looked at rat models.
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.
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. http://wellnesswordworks.com/mental-health-outcomes/
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.
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.
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
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.
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.”
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.
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.”
If you want to hear young people talking about mental health stuff, just come to any one of our Poetry for Personal Power events. Or we have about 400 videos on You-Tube.
A great way to measure outcomes is money earned, income. After all, that’s how the rest of society judges your worth.
Is your income roughly the same as people with the same age, demographics, and education?
But it’s one simple number that is pretty easy to measure, and already being measured in many settings.
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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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Another problem with that brochure is that it implied that the main role of a peer specialist could be to help improve “adherence.”
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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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Those of you saying, “never compromise for money,” what programs do you run and how much impact do you have?
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It’s a compilation of irrationality from interactions with about 10 different funders.
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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. http://wellnesswordworks.com/riverbend-mental-health-center/
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The Right Care Alliance got a $2million grant from Robert Wood Johnson Foundation to address over-treatment. Their slogan is the “Right Care for the Right Person at the Right Time.” They did pretty cool work including a whole special issue in the Lancet about this.
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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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I really like this post. I’ve sat in a lot of meetings and got blacklisted for having an opinion. It’s spot on. I don’t know why people commenting are pissy, I bet a lot of them haven’t sat in those meetings.
I am starting to think that sitting in those rooms is pointless, but at least I tried. At least I earned my exclusion.
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We do have pretty strong evidence that D2 elevation leads to psychosis. http://www.pnas.org/content/102/9/3513
The question is, what caused the D2 elevation?
It’s like, stress causes increases in cortisol, but what caused the stress?
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This is another important article in mental health nursing: basically saying why and how it’s hard for nurses to learn about recovery. But once they do, they can’t go back. blue pill or red pill moment.
https://www.ncbi.nlm.nih.gov/pubmed/22341997
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Thanks for the warning. It sounds like you got a pretty severe brain injury during the treatment. It sounds like is not that uncommon. http://www.resourcenter.net/images/AAPB/Files/Biofeedback/2007/biof_negative_effects.pdf
I’ve been told to get neurofeedback for my brain injury. Now it sounds like I might have been lucky that I couldn’t afford it.
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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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I think Entrepreneurship is the answer. None of the psych survivor solutions were designed to be scalable.
Capitalism is not the problem, it’s crony, insider, blind money, corporate welfare capitalism.
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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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Look at Frameworks.org and study framing. That’s the best way to argue or ask for policy change. Most people do it wrong.
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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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Join the Right Care alliance. You can help. Join us and help out. Sorry about the term “behavioral health,” we will get rid of that soon.
https://www.facebook.com/events/1590753334274058/?ti=as
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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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Each NAMI chapter is wildly different in philosophy. NAMI national is more disease model than many of the local groups.
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I’m sorry, I didn’t think of this. I’m an ECT survivor myself, I know the damage. I should have realized.
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I don’t understand why he doesn’t just run away? There are various points at which the psychiatrists have him on leave. I’m sure a bus ticket, train ticket, plane ticket, etc, could be had during those instances.
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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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What about the increasing suicide rates? That too, right?
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I’m working out a plan to steal the First Order’s money from their funders. We’ll see how that goes…that might be one more strategy for you to write on.
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A certain amount of this post was cut and pasted from other stuff. You are correct. I evidently made an error in assembly with this document.
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Tell your friends in our part of the country to apply for our sponsored advocates program. We pay them to help nonprofits work through a Wellbeing Impact Assessment process. http://poetryforpersonalpower.com/advocate-sponsorship/
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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.
MEMBERSHIP BANNED
Sincerely,
ACEsConnection
http://www.acesconnection.com
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. http://www.acesconnection.com/topic/is-nuerobiology-info-the-most-effective-health-care-messaging-campaign?reply=438718675367160433#438718675367160433
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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 won’t tell anyone. Mum’s the word.
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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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It won’t be too hard to make a little miniature washing machine type thing filled with O.1 Molar hydrochloric acid and maybe some pepsin. That would fake the pill out nice and snappy. Or just try any bowl of strong acid first.
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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.
http://www.npr.org/sections/13.7/2014/04/28/307659432/rational-debate-we-can-t-live-together-without-it?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20140428
But please feel free to politely email him any references you think are valid. [email protected]
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Email him, and politely keep explaining the issues.
[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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email corinnawest816 at gmail dot com
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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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send me an email using the author contact form. I have a bunch of stuff on Google Drive and I can attach those to an email pretty easy
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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. http://www.creatingcommunitysolutions.org/
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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Yes, agreed, all the people above are doing just ad hominem attacks, not actually addressing the issues.
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Wait, your response is basically, “Bob Whitaker is nice, but he’s a journalist and I know more than him because I’m a clinician.”
So I challenge you, what three areas are you right about where he is wrong? Just three areas. Go, if your clinical based evidence is so strong.
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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. http://wellnesswordworks.com/emotional-distress-causes-psychosis/
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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If you want to know how young black people overcome adversity, we’ve got over 400 videos up on the Poetry for Personal Power You Tube channel.
https://www.youtube.com/playlist?list=PLePxiZ4YtCeC0OhvrPpWT85owrVIu4aQ1
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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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How is this a dialogue?
I just see Allen Frances promoting his theory, exactly the same it is was a week ago without any revision at all from the multiple responses he’s gotten over the last week.
And our people are responding again to his now outdated theory, but no one is responding back to our people.
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I think we’re in agreement on the psych drug stuff. http://wellnesswordworks.com/psychiatric-medication-effectiveness/
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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I don’t like the term “anti-psychiatry.” I prefer the term “medical-harm aware advocate.” It squarely indicates both the source of the problem and the solution. See my blog here a couple of days ago.
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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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Sorry, I mislinked that link. It’s this article. Send me an email and i will send you the whole PDF if it’s behind a pay wall.
http://informahealthcare.com/doi/abs/10.3109/09638237.2011.562262
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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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My concern is that the perception is different, that anti-psychiatry is perceived as anti-science. This is why I prefer the term “medical harm aware advocate,” because then it point clearly to both the cause and the solution of the problem.
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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. http://www.madinamerica.com/2012/11/carter-center-social-inclusion/
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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Thanks for the nice thoughts and the poem. Here is a poem about the positives of being outside consensus reality. What people call “psychosis.”
https://www.youtube.com/watch?v=PfBKa9EpMzI
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Er,,, well neither are the psych drugs.
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The best website I’ve found on recreational drugs is Erowid.com. I think you are right that illicit drugs and psych meds have similar mechanisms of action. If we could make a table for both the psych meds and the illicit meds that listed potential harms on it, that would be a valuable graphic explanation. Like this: http://medicalmarijuana.procon.org/view.resource.php?resourceID=004477
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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. http://www.madinamerica.com/2012/08/please-stop-saying-medical-model/
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. http://corinnawest.com/spiritual-emergency/
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 like your poem, and your story, and your friend’s story. I was inspired by you long ago when I read your story in Firewalkers. Thanks for talking to me last month. You helped me realize I can give myself time for healing instead of competing with other people.
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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?
-Corinnna
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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, the same as antidepressants? In other words, quitting smoking has no effect at all? Or is liked to violence? Talk about a backhanded compliment.
http://www.ssristories.org/
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There is that organization. You can help make them stronger. http://www.mindfreedom.org/
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Post it here, too. http://itsok.us/
These people want to “talk about it.” Be nice to them, they’re my local friends that just need a bit of education about how to move beyond the disease model for emotional distress. Email the story to [email protected].
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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. http://wellnesswordworks.com/trauma-after-natural-disasters/
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 http://nerdighters.ning.com 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 http://fetlife.com. Don’t ask me why I know this, I just learned it from a little birdie somewhere.
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I hope you’ve seen my posts on the Kansas City Dialogues? Send me an email and I’ll get you as much info as possible.
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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. http://www.pnas.org/content/102/9/3513.long
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. http://wellnesswordworks.com/emotional-distress-causes-psychosis/
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,
Philip
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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. http://en.wikipedia.org/wiki/Coagulation
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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Give your stepdaughter my phone number. It’s on my website. I’m still in bed lots recovering from brain injury with nothing to do but talk on the phone.
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Seeman is saying that all stressors that cause psychosis have this common path for how they work. All those types of life situation stressors cause D2 supersensitivity. This is not dopamine as cause, it’s life situation as cause, and dopamine as mechanism.
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The thing he’s saying is that every life situation cause has this one physical mechanism in common. I don’t think Seeman mentions child abuse because you can’t study D2 supersensitivity without dissecting the brain, thus he’s only looked at rat models.
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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. http://wellnesswordworks.com/mental-health-outcomes/
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.
http://www.madinamerica.com/2013/08/community-discussions-now-actually-perspective/
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. http://www.youtube.com/watch?v=h93u0MPmh8g
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Kansas City update: We already have 27 psychiatric survivors signed up for this event!
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I think I was just saying that spending money research peer practices would be a lot better than research the genetic BS. I can clarify this. Thanks.
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It’s right up there in #1. First thing.
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It’s not just psych meds, it’s antibiotics, too. Lots of pharma pundits are saying that the “blockbuster” model for pharma needs to be redesigned.
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The best discussion I found on this was done by Ron Unger. http://recoveryfromschizophrenia.org/recovery-why-is-it-being-redefined-to-mean-doing-better-but-still-mentally-ill/
So now I just clarify by saying “complete recovery” to differentiate between that and the partial recovery most people are willing to accept.
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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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I posted the wrong link: http://www.madinamerica.com/2012/08/please-stop-saying-medical-model/
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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.”
https://www.facebook.com/events/591553740870575/
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If you want to hear young people talking about mental health stuff, just come to any one of our Poetry for Personal Power events. Or we have about 400 videos on You-Tube.
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