NAMI Lies: A brief analysis of NAMI sponsored misinformation about “schizophrenia”

http://recoveryfromschizophrenia.org/2011/12/nami-lies-a-brief-analysis-of-nami-sponsored-misinformation-about-“schizophrenia”/

NAMI Lies: A brief analysis of NAMI sponsored misinformation about “schizophrenia”
Author: Ron Unger


At least as of today, if a person Googles “schizophrenia recovery” the first link that is not an advertisement is to a document titled “Understanding Schizophrenia and Recovery” authored by NAMI. (I would link to it for your convenience, but I hesitate to do anything that would further increase the Google rankings of a site that claims to be increasing “understanding” yet seems more dedicated to deliberately distorting the facts.)

I’ll start with a disclaimer. While I am seriously challenging the national organization of NAMI that is responsible for the document under discussion, I am not expressing an opinion about any local NAMI chapter. Local NAMI chapters have some degree of independence from NAMI national, and some of them are fairly progressive. But hopefully NAMI chapters that wouldn’t spread misinformation will do more to challenge the national organization that seems only too willing to lie to the public.

NAMI’s propaganda efforts start within the title of the document, which is: “Schizophrenia and Recovery; What you need to know about this medical illness.” NAMI is implying that it is a fact that “schizophrenia” is a “medical illness” and wants us to think that it is not in any way an understandable reaction to life events; but there are actually large numbers of both research studies and individual stories that point to the opposite conclusion.

The next sentence spreads more confusion, with its claim that “Schizophrenia interferes with a person’s ability to think clearly, manage emotions, make decisions, and relate to others.” NAMI wants us to ignore the possibility that the person diagnosed with “schizophrenia” may be having problems with thinking, emotions, decisions and relationships because of what happened to them and how they were treated, and wants us to think that some theoretical “illness” called “schizophrenia” did it instead.

It is worth reflection on the likely consequences of telling someone that their experience and behavior is definitely being caused by a “medical illness,” and not by what has happened to them and how they chose to react to it. A very probable effect of this sort of “explanation” is the creation of confusion within the person that in itself is likely to interfere with that person’s ability to handle thinking, emotions, decisions and relationships. Of course, if the NAMI explanation creates more difficulties for the person, those difficulties will also be attributed by NAMI to the “illness” and not to the misinformation.

On page 2, it is stated that “Research has linked schizophrenia to changes in brain chemistry and structure….” Reading this, one might assume that changes in brain chemistry and structure have been found to go along with “schizophrenia” in the same way that having high blood sugar goes along with diabetes, a condition NAMI suggests in the next sentence is “like” schizophrenia. But this simply isn’t true. Instead, researchers have only found that the people diagnosed with schizophrenia are LIKELY to have brain differences compared to the AVERAGE person who doesn’t have the diagnosis: many people diagnosed with schizophrenia don’t have the differences, and some people not diagnosed do have the differences. And it isn’t clear where all the differences come from: someare likely caused by the drugs, others by being inactive, and most all of the differences have also been found in people who suffered abuse in childhood.

This last issue, abuse in childhood, is something NAMI clearly doesn’t want anyone to associate with “schizophrenia.” NAMI states definitively in the next paragraph that “Schizophrenia is not caused by bad parenting….” NAMI makes this statement despite what is now a very large amount of research that shows that abuse in childhood dramatically raises the odds of getting a diagnosis of schizophrenia in adulthood. This applies to all types of abuse: neglect, physical abuse and sexual abuse. More severe levels of abuse have been associated with more severe levels of later psychosis in all the studies that looked for such a “dosage relationship.”

NAMI’s denial of the possible link between bad parenting, or abuse, and later “schizophrenia” amounts to collaboration with abusers in denying the effects of abuse even for people who have been severely mistreated. “You are just “schizophrenic,” you can’t blame your problems on anything that happened to you!” Such denial is itself “crazy-making” and results in further emotional abandonment of already abused people; but of course if any “symptoms” result from the “schizophrenic” person encountering such lies, it will just be blamed on “the illness.”

In making the above statements, I am definitely not saying that all people diagnosed with “schizophrenia” had abusive childhoods or that it is definitely true that any NAMI parents are abusers. There was a period of time when many clinicians would automatically blame parents when a child appeared to have “schizophrenia” but such approaches were seriously over-simplified. More complex perspectives acknowledge that children may experience abuse and trauma growing up even when parents are doing their best to keep them safe, and in other cases, children may have a non-traumatic childhood but experience problems that lead to the difficulties labeled “schizophrenia” later in life. So NAMI would have my full support if their point was that we should not assume that bad parenting caused any particular case of “schizophrenia,” but when they claim that bad parenting is definitely never a cause, they appear to have deliberately lost touch with reality. (The information on the connection between having an abuse history and a later diagnosis of “schizophrenia” is now widely enough know that I believe there is no way NAMI leadership could be unaware of it, which is why I am suggesting that NAMI is “lying” and not just misinformed or misunderstanding.)

NAMI goes on to declare in the next paragraph that “schizophrenia” is completely unrelated to “dissociative identity disorder’ (a disorder common among those severely traumatized as children.) While NAMI is only repeating here what many so-called “experts” have to say, the truth seems to be that the same sorts of problems exist for people with both diagnoses, and the “voices” that often plague those diagnosed with “schizophrenia” are not fundamentally different from the “dissociated identity states” that plague those diagnosed with “dissociative identity disorder.”

Toward the bottom of page 2, NAMI states that “Medications are crucial to symptom control….” The fact is that only some people find medications crucial to symptom control. Many people find ways to completely recover and definitely do not need medications. Others don’t recover but also find that the medications don’t make things better and may make things worse. Of course, some people do find the medications helpful, but even in those cases it is often unclear if they are truly necessary; it may just be that the right alternatives have not been offered to some of these people.

I won’t even bother trying to sort out the distortions in the rest of the document. It isn’t all misinformation: NAMI mixes in some facts and some helpful details. But the existence of so many false claims in just the beginning of a document indicates that NAMI is more committed to spreading propaganda than it is to the truth.

I hope that if enough of us comment on these sorts of lies, we can embarrass NAMI into cleaning up its act. And by confronting NAMI, we can also make some headway in getting more accurate information out to those who need it, accurate information that is seriously overdue for most of those in our mental health system.
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Link to article on 29 Medical Causes of Schizophrenia

Schizophrenia, neuroleptic medication and mortality

Schizophrenic patients given neuroleptic medication die at an alarming rate.

http://bjp.rcpsych.org/cgi/content/abstract/188/2/122

http://bjp.rcpsych.org/cgi/reprint/188/2/122

http://www.springerlink.com/content/v87mlpbdv096lf0v/

http://www.gims.tcu.edu.tw/981%A4%BD%BD%C3%B1M%B0Q/1103%B6%C0%A6%B6%A7%C2.pdf

That's too high a price for the patients, their families and society to pay.
Patients need and deserve proper medical workups.

Antidepressants Dangers - Women's Health Initiative reports

"The (Women's Health Initiative) findings, in the largest cohort of women yet studied, provide additional warning that antidepressant therapy may in fact be detrimental with respect to stroke and total mortality in this demographic population."
Psychology Today commentary

Death by Pharmaceuticals: Brittany Murphy's Meds Leaked

TMZ and Huffington Post have leaked a list of some meds found with Brittany Murphy at the time of her death.

Brittany Murphy's bedroom had a lot of prescriptions drugs in it at the time of her death over the weekend, and TMZ has the list.

In a lengthy article detailing how Murphy went to the bathroom, was found collapsed by her mother 30 minutes later and was put into the shower by her husband in an effort to revive her before 911 services arrives, is the list, as detailed by investigators at the scene.

According to the notes, the medications included Topamax (anti-seizure meds also to prevent migraines), Methylprednisolone (anti-inflammatory), Fluoxetine (depression med), Klonopin (anxiety med), Carbamazepine (treats Diabetic symptoms and is also a bipolar med), Ativan (anxiety med), Vicoprofen (pain reliever), Propranolol (hypertension, used to prevent heart attacks), Biaxin (antibiotic), Hydrocodone (pain med) and miscellaneous vitamins.


The notes say, "No alcohol containers, paraphernalia or illegal drugs were discovered."

See the article at Huffington Post

UPDATE: NPR weighs in on safety concerns regarding the number of psych drugs that American adults are combining.
LINK

UK: Scandalous abuse of the elderly - prescribed antipsychotics

From the page:

It is the first time the scale of the abuse in hospital wards is exposed, following warnings that 100,000 dementia patients in care homes are prescribed the drugs leading to the deaths of 23,000 a year

Three quarters of nurses have seen people with dementia in general wards in hospital prescribed antipsychotic drugs that are known to double the risk of death and triple the risk of a stroke in these patients, research has shown.

It is the first time the scale of the abuse in hospital wards is exposed, following warnings that 100,000 dementia patients in care homes are prescribed the drugs leading to the deaths of 23,000 a year.

Ten leading charities, carers groups and experts have written to The Daily Telegraph saying: "We cannot stand by while this scandalous abuse of vulnerable citizens continues."

Neil Hunt, Chief Executive of Alzheimer’s Society said: "The massive over prescription of antipsychotics to people with dementia is an abuse of human rights, causing serious side effects and increasing risk of death. These powerful drugs should only be used in a small number of cases. The Government must take action to ensure that these drugs are only ever used as a last resort."

They have called on the government to publish its long-overdue review of the use of antipsychotics which ministers promised would be out in May of this year.

Rebecca Wood, Chief Executive of the Alzheimer’s Research Trust, said: "While the Department of Health prevaricates, thousands of people are being put at risk through the misuse of antipsychotics."

There are 700,000 people in Britain with dementia and the numbers are rising rapidly.
Antipsychotics have a sedative effect and are not licensed for use in dementia but are prescribed when patients become agitated or difficult and often then are left on them for long periods.

Link

Secrecy shields medical mishaps from public view

Almost 200,000 people a year die from preventable medical errors and hospital acquired infections. More people die from preventable medical errors and hospital-acquired infections than from alcohol-related auto accidents, murder, illegal drugs and suicide combined.
Link

No Escape - Prison Rape

MATURE SUBJECT MATTER
Too many of the incarcerated are mentally ill, and institutional treatment in both prisons and hospitals - crowded conditions, bad nutrition, poor or nonexistent medical treatment, indifference and violence - will not improve their health. Rape happens in asylums and mental hospitals as well.

Found at
http://arch1design.com/blog/?p=1571

Top Ten Noteworthy Lobotomies

Link
Wikipedia entry on lobotomy
We hear that nowadays they use pills instead of icepicks. See "chemical lobotomy".

Is the Schizophrenia Mortality Study in The Lancet CREDIBLE?

Is the Schizophrenia Mortality Study in The Lancet CREDIBLE?
Friday, 17 July 2009
Unless the overall treatment and services provided to schizophrenia patients in Finland is unique and especially protective—which the authors do not suggest—their claimed findings of lowered mortality rates for antipsychotic drug users are belied by a consistent body of evidence.

A study purporting to analyze mortality rates of 66, 881 schizophrenia patients in Finland (1973 to 2005) was published in the prestigious journal, The Lancet. [Abstract below]

The study has received much media attention because the authors claim—contrary to well documented previous reports about spiraling mortality rates among schizophrenia patients treated between the 1970s and 2000 [1, 2, 3, 4, 5, 6]—that the use of the second generation antipsychotic drugs in Finland was associated with lower mortality rate compared to no drug treatment.

What’s more, the authors claim that Clozaril (clozapine) among all antipsychotics was associated with the lowest number of deaths, and its restricted use should therefore be reassessed for use a first-line treatment. Unless the overall treatment and services provided to schizophrenia patients in Finland is unique and especially protective—which the authors do not suggest—their claimed findings are belied by a consistent body of evidence.

To whit, an eight year study of FDA MedWatch adverse drug reports (between 1998 to 2005) found that Clozapine was linked to 3,277 deaths, making it the third most dangerous prescribed drug in the U.S. Clozapine was also linked to over 4,300 adverse drug events that led to disability or required serious medical intervention. [7]

A critical analysis by psychiatrist, Grace Jackson, MD (below), identifies fatal flaws in the study design and numerous methodological artifacts that introduced bias which minimized the detection of drug-related mortality.
AHRP Link

Blowback: Agent Orange in Canada

Excerpt from Blowback: A Canadian History of Agent Orange and the War at Home
at link

Drug Rep on SURVIVOR: Merck told her to sell drugs that kill

Corinne Kaplan is a candidate on the American reality TV show Survivor.

At one point, Corinne insisted, “I have no moral compass.” The most damning illustration has to do with her (now former) job as a pharmaceutical sales rep, where she said she knowingly sold drugs to physicians that she knew would kill people. “Selling drugs is a lie. I sold drugs that I knew damn well—I sold Vioxx for Merck before it got taken off the market for killing people. I knew damn well it was dangerous; I went around telling them to write it. There’s a lot of serious lying I’ve done in my life,” she said.

That’s okay, Corinne told me, because “I’m doing a job. For me, in that case, Merck told me to go out and sell drug even though I had hesitation about it. It’s not for me to say. … Don’t listen to me. Read your fucking journals. Why the fuck are you listening to your rep? Just because I’m pretty? You think I know more about the drug? No.”

Likewise, for Corinne, being on Survivor Gabon “is work; I’m trying to make a million dollars. It really doesn’t matter. I hope everyone gets injured; I don’t care. Just not me.”

Hear Corinne talk about wanting the money, the type of person she is, her problems with production, and selling a drug she knew would kill people here.

UK: Four psychiatric patients in NHS care die every day

Link

Why Doctors Can't Think

Overconfidence.
Arrogance.
Addiction.
Miseducation.
Greed.

Video - Money Talks: Profit Before Patient Safety

This 50-minute documentary was created to give an in-depth, academic perspective on the questionable marketing tactics of the pharmaceutical industry, and features the commentary of investigative journalists and medical professionals including Dr. John Abramson, author of Overdosed America, and Prescription Access Litigation Project Director, Alex Sugerman-Brozan. Other notable interviewees include Dr. Bob Goodman of Columbia University, founder of the 'No Free Lunch' program, and Dr. Jerome Hoffman of UCLA Medical School.

But these day may be numbered. Pharma may soon have to disclose its contacts. Read more here.

Reader's Digest: FDA is America's Next Katrina

NEXT? It's already here.Nearly 800,000 people die from drug side effects every year. Deaths from vitamins: None.

Read this report on the FDA from the ultra-conservative READER"S DIGEST here