Once more, I have been banned from an online community:
the
E-sanga Buddhist Community.
My crime? I've got a hunch I wasn't pushing the agenda someone else wanted me to push. I was banned and the posts that I'd made dissappeared from that discussion even though every single one was related to schizophrenia and recovery. An example of the type of posts that had been posted can be found here:
Schizophrenia & Suicide. (The data on suicide and schizophrenia were reposted elsewhere but I've since added posts I'd put a substantial effort into at the bottom of this blog entry.)
Update 1: This morning my access was partially restored without explanation -- I can access my mailbox but can't make any posts. I'm still not certain what it was that caused the moderator to react so strongly but I think I would feel more comfortable not participating any further at the E-Sanga Buddhist Community. I did enjoy the conversations I had taken part in and I enjoyed getting to know a few other people. I was a member for approximately 72 hours.
Update 2: The message below was in my outside mailbox this morning. I logged back in long enough to respond.
Hello spiritual_emergency,
Please read the TOS about commenting in a thread about a Moderator action. You have been suspended for one day, and your Warn Level raised due to your posts about moderation in the Schizophrenia thread in the Help Forum. You are welcome back to participate in threads after that period.
cooran
When cooran initially commented in that thread it was to note:
Please remember that ... the aim is to assist the Original Poster. I asked how she knew if the poster was being helped -- apparently, this is where I violated the commandment, "Thou shalt not challenge the moderator's authority".
At the time cooran made her decision, the original poster appeared to have not been back since initiating the discussion and had not commented any further in that thread. As a result, there was, in fact, no means of determining if he had found the ensuing conversation to be of personal assistance. cooran was the one who determined what would be helpful to him and then shut the conversation down by banning participants and removing posts at her discretion.
Of all the posts made in that thread since Oct 3, only one was permitted to stay; a post made last night which included this bolded statement:
take your meds. What was it about that post in particular that caused cooran to feel it was the only "helpful" post that had been offered to the original poster out of the many that were made over the span of three days?
I've since been advised there is a past history between cooran and another contributor to that conversation. As a result, it's possible I was merely a pawn in the moderator's game of control. This prior conflict came to light moments later when that individual was cornered by cooran in a thread related to trauma and recovery and asked to present her certifications for speaking with authority on PTSD. The poster noted she was a victim of terrorism and that she had been speaking from the position of having PTSD -- not as a professional expert. In spite of which moderator cooran still came back to quote the medical disclaimer on the site and insist that the poster provide personally revealing information in accordance with the moderator's demand. It's not difficult to recognize the abuse of power.
My response to cooran:
I don't believe I'll be participating any further, cooran. You state that the purpose of the discussion was to help xxxxxxx and as far as I knew, I was doing precisely that.
Bear in mind that xxxxxxx had originally titled the topic "Schizophrenia, or there is more to it". This suggests to me that he was open to a conversation that demonstrated that "more". What made you so certain that xxxxxxx would not be helped by reading the conversations of two individuals who had undergone the experience of psychosis and recovered from it? Or studies related to neuroleptic medication and suicide rates?
If you were concerned that the conversation was drifing off-topic it might have been more respectful to nudge it back in place with a public reminder or private message as opposed to banning me and removing all those posts from the thread with no explanation other than that I had said something to offend you.
I have been banned from other online communities cooran. Many people are uncomfortable with the information I have to share. I've also been harassed, threatened, stalked -- I always like to point out to people that behavior never came from schizophrenics, it came from psychiatrists, psychologists, occasionally people who work in the sidelines of the mental health industry... but never from schizophrenics.
At this point in time I no longer feel comfortable participating at this community. I've made note of my experiences on my blog, shared my experience with a number of individuals in the mental health community and that will be the end of my interactions with the E-Sangha Buddhist Community.
Regards.
spiritual_emergency
Update 3: Ahhh. I've been informed that cooran works as a social worker. Perhaps that explains her actions. I've seen such tactics before. Some professionals prefer their "schizophrenics" to be humbled and compliant. If they're not, they find a way to punish them, to force them to acquiese to their control. It's disturbing behavior to witness, particularly in a professional but it happens quite routinely. In addition to being painful and damaging to the targeted individual it also casts an unsavory light upon the entire profession.
Music of the Hour: The Killers: HumanSee also:
Bias & Stigma Within the Mental Health Community
schizophrenia.com
How This Blog Got Started
Voices of Recovery
Member: A lot of the meds that have come out in recent years, such as Geodon, have little or no side effects.Please note, the second generation atypicals have
different side effects. While it's true that movement disorders are less frequently attributed to them, metabolic disorders (i.e. diabetes) and pulmonary complications (i.e., sudden cardiac arrest) are linked more strongly with the newer neuroleptics.
This does not discount the reality that many people identify antipsychotic medication as personally helpful, however they are entitled to an accurate portrayal of their risks. Stating that the newer atypicals have little or no side effects is simply not accurate.
No offense intended, I just wished to clarify that statement.
Member: Spiritual Emergency, you've said nothing about the statistics of the side effects you've mentioned or compared them with the suicide rates we've seen on this thread......Many psychiatrists try to frighten families into keeping the person on medications by saying 10% of people with schizophrenia commit suicide. If you are told that, ask to see evidence proving that the statistic is accurate. The truth is, national statistics on suicide disprove that statement. There is no documented evidence supporting the assertion that 10% of people with schizophrenia commit suicide. If that was true, there would be over 250,000 suicides recorded in the United States every year instead of the 30,000 reported for all causes. Source: A Special Message for Family & Friends======================Most Frequent Suspect Drugs in Deaths 1998 - 2005 [FDA Report]
Oxycondone (Opiate): 5,548
Fentanyl (Opiate): 3,545
Clozapine (Anti-psychotic): 3,277
Morphine (Opiate): 1,616
Acetaminophen (Analgesiac): 1,393
Methadone (Opiate): 1,258
Infliximab (Anti-rheumatism): 1,228
Interferon beta (Immunomederator): 1,178
Risperidone (Anti-psychotic): 1,093
Etanercept (Anti-rheumatism): 1,034
Paclitaxel (Atineoplastic): 1,033
Olanzapine (Anti-psychotic): 1,005]
Rofecoxib (Anti-inflammatory): 932
Paroxetine (Anti-depressant): 850 Source: Adverse Events [PDF File]======================... researchers in Ireland reported in 2003 that since the introduction of the atypical antipsychotics, the death rate among people with schizophrenia has doubled. They have done death rates of people treated with standard neuroleptics and then they compare that with death rates of people treated with atypical antipsychotics, and it doubles. It doubles! It didn't reduce harm. In fact, in their seven-year study, 25 of the 72 patients died. Source: Chemical Warfare: An Interview with Robert Whitaker======================... There is an excess of death from natural causes among people with schizophrenia. Aims Schizophrenia and its treatment with neuroleptics were studied for their prediction of mortality in a representative population sample ... During a 17-year follow-up, 39 of the 99 people with schizophrenia died. There is an urgent need to ascertain whether the high mortality in schizophrenia is attributable to the disorder itself or the antipsychotic medication. Source: Neuroleptic Medication & Mortality======================... A study in France found that excess in mortality among patients with schizophrenia was, among all variables studied, most directly correlated with the dosages of antipsychotic medication received. In the United States, high rates of death, and especially of fatal injury, have also been reported in people treated with antipsychotics. Further, a study from Finland found that the number of antipsychotic drugs used correlated with mortality...Source: An Outcome Measure in Schizophrenia: Mortality [PDF File]======================Member: I would also like to say that side effects are published (and as you can see on this thread, available on the Web) and, in my experience, lists are made available every time a patient purchases a prescription drug. In 2002, British and Japanese regulatory agencies warned that Zyprexa may be linked to diabetes, but even after the FDA issued a similar warning in 2003, Lilly’s Zyprexa train was not derailed, as Zyprexa posted a 16 percent gain over 2002. The growth of Zyprexa has become especially vital to Lilly because Prozac—Lilly’s best-known product, which once annually grossed over $2 billion—having lost its patent protection, continues its rapid decline, down to $645.1 million in 2003.
At the same time regulatory agencies were warning of Zyprexa’s possible linkage to diabetes, Lilly’s second most lucrative product line was its diabetes treatment drugs (including Actos, Humulin, and Humalog), which collectively grossed $2.51 billion in 2003. Lilly’s profits on diabetes drugs and the possible linkage between diabetes and Zyprexa is not, however, the most recent Lillygate that Gardiner Harris broke about Zyprexa in the New York Times on December 18, 2003.
Zyprexa costs approximately twice as much as similar drugs and Harris reported that state Medicaid programs—going in the red in part because of Zyprexa— are attempting to exclude it in favor of similar, less expensive drugs. Harris focused on the Kentucky Medicaid program, which had a $230 million deficit in 2002, with Zyprexa being its single largest drug expense at $36 million. When Kentucky’s Medicaid program attempted to exclude it from its list of preferred medications, the National Alliance for the Mentally Ill (NAMI) fought back. The nonprofit NAMI—ostensibly a consumer organization—bused protesters to hearings, placed full-page ads in newspapers, and sent faxes to state officials. What NAMI did not say at the time was that the buses, ads, and faxes were paid for by Eli Lilly. Source: Eli Lilly, Zyprexa & The Bush Family======================... You've heard the hype: New psychiatric drugs like Zyprexa and Risperdal, called atypical antipsychotics, are a vast improvement over old drugs like Haldol. Whether or not the new drugs work any better, they make a lot of money for the drug companies. While a month's supply of an old drug like Haldol costs less than $30, a month's supply of Zyprexa can cost over $500.
To determine if these drugs are worth their outrageous price, the National Institute of Mental Health conducted one of the largest and longest independent studies ever, the Clinical Antipsychotic Trials of Intervention Effectiveness, or CATIE. Four years and $44 million later, the CATIE study, published in September 2005, reached a startling conclusion: the new drugs "have no substantial advantage" over the old ones.Source: CATIE & You======================... Every psychiatric expert involved in writing the standard diagnostic criteria for disorders such as depression and schizophrenia has had financial ties to drug companies that sell medications for those illnesses, a new analysis has found.
Of the 170 experts in all who contributed to the manual that defines disorders from personality problems to drug addiction, more than half had such ties, including 100 percent of the experts who served on work groups on mood disorders and psychotic disorders. Source: Experts Defining Mental Disorders Are Linked to Drug Firms======================... The big finding is that people with schizophrenia are losing brain tissue at a more rapid rate than healthy people of comparable age. Some are losing as much as 1 percent per year. That’s an awful lot over an 18-year period. And then we’re trying to figure out why. Another thing we’ve discovered is that the more drugs you’ve been given, the more brain tissue you lose.
Q. WHY DO YOU THINK THIS IS HAPPENING?
A. Well, what exactly do these drugs do? They block basal ganglia activity. The prefrontal cortex doesn’t get the input it needs and is being shut down by drugs. That reduces the psychotic symptoms. It also causes the prefrontal cortex to slowly atrophy.Source: Using Imaging to Look at Changes in the Brain======================... Both typical (first generation) and atypical (second generation) antipsychotics are associated with an increased risk of stroke, Douglas said. "This risk is substantially higher in patients with dementia than those without. These findings need to be factored into prescribing decisions made by doctors caring for patients with often-distressing and difficult-to-treat psychiatric symptoms."
The risk for stroke was slightly higher for people taking the newer atypical antipsychotics, compared with people taking the older typical antipsychotics. Atypical antipsychotics include drugs such as Abilify, Clozaril and Zyprexa. Typical antipsychotics include Thorazine, Haldol and Clopixol.Source: Antipsychotic Drugs Boost Stroke Risk======================... Both in vivo and post-mortem investigations have demonstrated smaller volumes of the whole brain and of certain brain regions in individuals with schizophrenia. It is unclear to what degree such smaller volumes are due to the illness or to the effects of antipsychotic medication treatment. Indeed, we recently reported that chronic exposure of macaque monkeys to haloperidol or olanzapine, at doses producing plasma levels in the therapeutic range in schizophrenia subjects, was associated with significantly smaller total brain weight and volume, including an 11.8–15.2% smaller gray matter volume in the left parietal lobe.Source: Neuroleptics & Gray Matter======================... As for the abnormalities that researchers have found with brain scans, Mosher thinks the antischizophrenic medication accounts for much of this. He says, "The Germans, who invented neuropathology, looked at the brains of thousands of schizophrenics before there were any neuroleptics. And they were never able to find anything. They never reported increased ventricular volume, which at postmortem you can measure quite easily. And they also never reported any specific cellular pathology, and they studied many, many, many brains." He adds that "there are a whole lot of people who don't have schizophrenia and also have enlarged ventricles. And there are people who have other psychiatric conditions who have enlarged ventricles, and there are a number of known causes of enlarged ventricles that are not schizophrenia. So, yes, there is a statistical difference, but it is not specific."
"On the other hand," Mosher continues, "there are studies that have shown that people treated with neuroleptics have changes in brain structure that are at least associated with drug treatment, dosage, and duration -- and have been shown to increase over time as drugs are given." He cites one "horrific study" of children between the ages of 10 and 15 in which the researchers measured the volumes of the kids' cortexes. "The cortex is what you think with, the part on the outside," Mosher explains. Over time, "They watched the cortical volume of these young people decline, while the cortical volume of the nonschizophrenic controls was expanding because they were adolescents and still growing." The researcher concluded that their schizophrenia had caused the decrease in the subjects. "And yet every single one was taking neuroleptic drugs," Mosher says. ...
Today Mosher calls himself "a lapsed psychiatrist" because he thinks the biological explanations of psychotic behavior embraced by so many of his colleagues resemble a religion more than they do a body of science. From his perspective as a heretic, he reflects, "We are all afraid of going crazy. And as long as we have someone out there who can sort of do that job for us, it's not our burden." He thinks it's comforting to believe schizophrenics act the way they do because their brains are diseased. Biological differences "make them different from us fundamentally," he says. "They're sort of a slightly different race than we are." Mosher thinks it's all "a way of carefully saying, 'These people are really different. And therefore we have the right to do whatever we goddamn please with them.'" Source: Still Crazy After All These Years======================In closing, while I would agree that the death rate among individuals suffering with schizophrenia should be a concern, I'm not certain that my concerns about the cause of those deaths are in alignment with your own. Nor do I feel that long-term antipsychotic medication is the best method of treatment although it may be very effective over the short-term.
None of this discounts the fact that many people identify antipsychotic medication as personally helpful
to them, but many of them don't trust the industry that markets the drugs, for good reason. That industry has a history of cover-ups and deception.
Member:
I’m interested in your opinion of this, “Drug Treatment of Schizophrenia,” which is provided by the Harvard Medical School Family Health Guide.When it comes to treatment, I am always going to be biased towards
successful treatments that do not include medication or that minimize the use of medication. This is because we know without a doubt that the use of neuroleptic medication comes with a significant bevy of short and long-term side effects in addition to an inflated cost that is breaking the backs of smaller healthcare networks. In addition, there is a high rate of medication non-compliance. As but one example, in the recent CATIE study, 79% of the subjects taking Geodon stopped taking it because they could not tolerate the side-effects.
Some examples of successful treatments with minimal or no medication include:
Diabasis: Diabasis was an experimental project in San Francisco. It was a residence facility that lived through three years and more of inpatient work with acute "schizophrenic" episodes in young adults without the use of medications, always as part of the county's community mental health system. Its purpose was to provide a home in which clients might have the opportunity to experience with full awareness their deepest processes during this intense turmoil. The recovery rate was 85%.Soteria: Like Diabasis, Soteria was a home-like treatment facility that attempted to support individuals through their crisis. The Soteria paradigm was the effort of the late Loren Mosher, the first Chief of the Center for Studies of Schizophrenia at the National Institute of Mental Health. Mosher also founded the Schizophrenia Bulletin and for ten years he was its Editor-in-Chief. "At 2 years post-admission, Soteria treated subjects ... were working at significantly higher occupational levels, were significantly more often living independently or with peers, and had fewer readmissions; 571/16 had never received a single dose of neuroleptic medication during the entire 2-year study period.Turku, Finland: A few years ago at a psychiatric clinic in Turku, Finland, it was decided to compare the outcome for first time psychotic patients if they got neuroleptics, with the outcome if they did not get the drugs. But first all the patients were granted three drug-free weeks. The plan was to have about ten patients in each of the two groups. However, the study could not be carried out. After the three weeks without neuroleptics virtually all the patients had overcome the psychosis, and the drug no longer appeared justified.Open Dialogue Treatment: Jaakko Seikkula, Ph.D. is a professor at the Institute of Social Medicine at the University of Tromso in Norway and senior assistant at the Department of Psychology in the University of Jyvskyl in Finland. Between 1981-1998, he worked as a clinical psychologist at the Keropudas hospital in Finland where he and colleagues developed a highly successful approach for working with psychosis known as Open Dialogue Treatment (OPT). The approach de-emphasizes the use of drugs and focuses instead on developing a social network of family and helpers and involving the patient in all treatment decisions. Among those who went through the OPT program, incidence of schizophrenia declined substantially, with 85% of the patients returning to active employment and 80% without any psychotic symptoms after five years. All this took place in a research project wherein only about one third of clients received neuroleptic medication. Official government statistics comparing 22 health districts in Finland found that Dr. Seikulla's district was the only one not to have any new chronic hospital patients in a two year period and led the National Research and Development Center for Welfare and Health to award a prize for "over ten years ongoing development of psychiatric care". ==========================================If you examine those programs in more depth you're going to find that in addition to a significantly higher recovery rate, a critical difference can also be found in the attitudes that fueled the approach of the founders.
For example, both Diabasis and Soteria were treatment facilities set up in homes not institutionalized settings. One of the tenets of Open Dialogue Treatment is that the treatment team meets with the individual in crisis in their home. In all cases, hospitalization -- which weakens one's social connections, so critical to recovery -- is avoided. Individuals in crisis were also seen as partners in the process, not as inferior subjects whose behavior had to be controlled or manipulated in a certain direction. When treatment decisions were made, individuals in crisis were included in the treatment decisions. In addition, the environment was hopeful -- psychosis was viewed as a temporary crisis not a permanent condition. These points only begins to touch on some of the underlying attitudinal differences between these type of successful treatment programs and those that rely on hospitalization, stigmatization, isolation and medication.
Overall, I believe that the most successful treatment would offer care in the home or a home-like environment. It would recognize the "patient" as an expert in their own experience and work with them to understand and integrate the experience. It would also offer support to the "patient's" larger social circle, typically comprised of family, friends, and even, coworkers. Until all of those factors are in place, I don't think we should even be considering medication. In truth, I believe it should be absent or very minimal during the first weeks of crisis. If an individual understands the process they are going through; knows that others have successfully passed through the same crisis states; if they are responded to with empathy and care, these factors can reduce anxieties and fears as well as or better than sedation.
If it was determined by all team members (including the individual in crisis) that medication would be helpful, at that time, choices would be made as based on individual need and obvious indications of improvement. Any medication provided would be given for as short a term as possible. In addition, efforts would be made to ensure that social connections remained in place or were strengthened.
The above treatment principles might not make big pharma happy, but they seem to produce greater happiness in "schizophrenics".
