From: Ruth E Ehrenberg
To: Tom Lane
Sent: Thursday, August 21, 2003 12:56 PM
Subject: Thank you....more dialogue needed

Dear Mr. Lane,

Thank you for your response to my inquiry. I think it is only through such a dialogue that progress can be made, although your pique at being asked to provide the scientific basis of your position is troubling. No doubt my question could have been phrased better, and I will therefore try to explain the underpinnings of it. Of course, when I say "biologic basis," I essentially mean that somehow a defective brain is involved.

I am not a scientist but a Grandmother who has been caring for a remarkably talented Grandson who was unfortunately labeled with Schizophrenia--a young man who is a brilliant pianist and whose career will never get off the ground with the administration of, and toxic side effects from, medication--believe me, we tried it. It was a nightmare! It is difficult to find people who are truly interested in him--not just interested in prescribing. As I want to make the best point that I can with this letter, I thought it best to ask a friend of mine, Jim Gottstein, to help me write it. In my correspondence with him he states:

First, my review of the literature reveals many claims of the "discovery" of biologic causes of mental illness which have quietly been laid to rest as invalid with little fanfare. For example, "Brain Disease Hypothesis for Schizophrenia Disconfirmed by All Evidence," by Al Siebert, PhD., Ethical Human Sciences and Services, Vol 1, No. 2 1999 discusses the complete lack of evidence and the logical fallacies involved in the defective brain hypothesis, which NAMI asserts is fact and you are only asking for the scientific basis.

Another paper, "A Critique of the Scientific Status of Biological Psychiatry," by Alvin Pam, Ph.D., Act Psychiatrica Scandinavica, 1990:82 (Supplement 362) discusses the errors in methodology and conception leading to the current view of the validity of biological psychiatry including professed biological markers with a discussion of sociology - medical, eugenics and the diathesis-stress model.

With respect to ADHD, the recent study "Broken Brains or Flawed Studies? A Critical Review of ADHD Neuroimaging Research," by Jonathon Leo and David Cohen, The Journal of Mind and Behavior, Winter 2003, Volume 24, Number 1, pp 29-56 reveals in its review of studies on ADHD and neuroimaging that most of them can not rule out that the differences observed are medication caused and the others "inexplicably avoided making straightforward comparisons" that could have given information on this issue.

Dr. Loren Mosher, the former chief of schizophrenia studies at the National Institute of Mental Health has published "The Biopsychiatric Model of "Mental Illness: A Critical Bibliography" on his website with a long list of papers and other scientific information disputing the validity of the defective brain hypothesis of mental illness.

So, Mr. Lane, it seems to me it is entirely fair for me and others to ask of NAMI what is the scientific proof for the defective brain hypothesis of mental illness.

Your taking umbrage at the question and suggesting it is diverting attention from the important NAMI work and entreating those who challenge the defective brain hypothesis to join NAMI's efforts is premature without NAMI being able to support its position scientifically . You go on to say "We have the means and the science to provide relief and recovery," which is, of course, exactly what I am asking for and neither you, nor anyone else has provided. Show me "the science"--it's exactly what I am asking for. The fact that you don't, speaks volumes.

I asked Mr. Gottstein why NAMI is so set on the biological theory which it has embraced.

I don't question the motives of NAMI, but believe it has been misled, refuses to consider it has been misled and has become entangled so financially with the pharmaceutical companies that its objectivity has been lost.

When a group such as NAMI represents people like me, then I ask, why would you question my motives? Why not question the motives of the pharmaceutical industry and stand behind people like me who have been hurt by them? Please stop to think about the desperation involved when people like myself watch our loved ones suffer the horrendous side effects of psychotropic medications and other powerful "treatments". First, do no harm..... I have seen the harm first hand. Have you witnessed the amazing focus of the six people who are now on a hunger strike asking for an answer to a simple question? A question which you have failed to answer. These are incredibly brave and dedicated people and they deserve an answer to their questions.

Yes, Mr. Lane, the questions do not just arise out of thin air -- they are borne from the incredible harm that these people have personally experienced arising out of the defective brain hypothesis of mental health and the incredible amount of harm that is being inflicted by treatments spawned under this theory. I would like to offer you the studies that I have received from Mr. Gottstein. Here they are.

Mr. Lane asserts, without any support whatsoever, that "we have the science to provide relief and recovery," yet the World Health Organization, in an extensive study confirming the totally unexpected finding that people recover much more often in non-industrialized countries, stated "being in a developed country was a strong predictor of not attaining a complete remission." "Schizophrenia: manifestations, incidence and course in different cultures, A World Health Organization ten-country study," Psychological Medicine, suppl. 20 (1992), 1-95.

The defective brain hypothesis of mental illness results in the overwhelming use of neuroleptics for people experiencing psychotic symptoms. Electroshock is making a comeback as is a "new and improved" version of lobotomy. Psychiatric survivors have experienced the horrors of these treatments, yet their experiences are ignored.

Dr. David Cohen, in his comprehensive review of the research on neuroleptics "A Critique of the Use of Neuroleptic Drugs," in From Placebo to Panacea, edited by Seymour Fisher and Roger Greenburg, John Wiley and Sons, 1997, states: [T]he negative parts [the side effects] are perceived as quite often worse than the illness itself. . . . even the most deluded person is often extraordinarily articulate and lucid on the subject of their medication. . . . their senses are numbed, their willpower drained and their lives meaningless. . . .

Forty-five years of NLP use and evaluation have not produced a treatment scene suggesting the steady march of scientific or clinical progress. . . . Unquestionably, NLPs frequently exert a tranquillizing and subduing action on persons episodically manifesting agitated, aggressive, or disturbed behavior. This unique capacity to swiftly dampen patients' emotional reactivity should once and for all be recognized to account for NLPs' impact on acute psychosis. Yet only a modestly critical look at the evidence on short-term response to NLPs will suggest that this often does not produce an abatement of psychosis. And in the long-run, this outstanding NLP effect probably does little to help people diagnosed with schizophrenia remain stable enough to be rated as "improved" -- whereas it is amply sufficient to produce disabling toxicity. . . . The positive consensus about NLPs cannot resist a critical, scientific appraisal.

Dr. Courtenay Harding, perhaps the most respected researcher in the field after her seminal work in the Vermont Longitudinal Study and reviewing all of the other longitudinal studies published "Empirical Correction of Seven Myths About Schizophrenia with Implications for Treatment," ACTA Psyciatrica Scandinava, 1994: 90 (suppl 384): 140-146. The abstract states: This paper presents empirical evidence accumulated across the last two decades to challenge seven long-held myths in psychiatry about schizophrenia which impinge upon the perception and thus the treatment of patients. Such myths have been perpetuated across generations of trainees in each of the mental health disciplines. These myths limit the scope and effectiveness of treatment offered. These myths maintain the pessimism about outcome for these patients thus significantly reducing their opportunities for improvement and/or recovery. Counter evidence is provided with implications for new treatment strategies."

Myth Number One is "Once a schizophrenic always a schizophrenic:" Evidence: Recent worldwide studies have . . . consistently found that half to two thirds of patients significantly improved or recovered, including some cohorts of very chronic cases. The universal criteria for recovery have been defined as no current signs and symptoms of any mental illness, no current medications, working, relating well to family and friends, integrated into the community, and behaving in such a way as to not being able to detect having ever been hospitalized for any kind of psychiatric problems.

Myth Number 5 is "Patients must be on medication all their lives.
Reality: It may be a small percentage who need medication indefinitely . . . Evidence: There are no data existing which support this myth.

In "Research on the Drug Treatment of Schizophrenia: A Critical Appraisal and Implications for Social Work Education" Dr. David Cohen in Social Work Education, volume 38, issue 2 (Spring 2002) analyzes the systematic flaws and biases pervading the published research on neuroleptics, including the "atypicals," concluding: "These flaws raise serious doubts about the scientific justifications for the widespread use of neuroleptics."

In "Happy birthday neuroleptics! 50 year later: la folie du doute," by Emmanuel Stip, European Psychiatry 2002 ; 17 : 1-5, Dr. Stip asks the following questions: "After 50 year of neuroleptic drugs, are we able to answer the following simple questions: Are neuroleptics effective in treating schizophrenia? Is there a difference between atypical and conventional neuroleptics? "At this point in time, responsibility and honesty suggest we accept that a large number of our therapeutic tools have yet to be proven effective in treating patients with schizophrenia." He also notes: "One thing is certain: if we wish to base psychiatry on EBM [Evidence Based Medicine], we run the genuine risk of taking a closer look at what has long been considered fact."

In "Atypical antipsychotics in the treatment of schizophrenia: systematic overview and meta-regression analysis" by Geddes J, Freemantle N, Harrison P, Bebbington P., BMJ (British Medical Journal) 2000 Dec 2;321(7273):1371-6, after a systematic and rigorous statistical analysis, it was found that "There is no clear evidence that atypical antipsychotics are more effective or are better tolerated than conventional antipsychotics."

In the face of all of this evidence against both the defective brain hypothesis of mental illness and the efficacy of psychiatric drugs, why is this view so prevalent? The answer is clearly that there is so much money to be made by the pharmaceutical companies that they have distorted the truth so that it is unrecognizable. This is already too long so I won't cite to research on this, but know that I can.

The bottom line is that faulty science is used to inflict harm on people including forcing people to take these dangerous and ineffective drugs against their desperate pleading against it. I, and the hunger strikers and their supporters, will not follow your call to join with you unless and until you produce valid science in support of your position. I don't think you can and your response is really an admission of that. Instead of attacking the messengers of truth, perhaps NAMI ought to re-evaluate its views. Maybe NAMI ought to consider the corrupting influence of its financial relationship with the pharmaceutical industry because I know that NAMI shares all of our goal of helping people who suffer from psychiatric symptoms. NAMI's current insistence on the unproven defective brain hypothesis of mental illness and support for forced drugging and other brain damaging "treatments" is getting in the way of achieving this goal. And it is harming tens of thousands of people. I think they are entitled to an answer to the simple question asking NAMI to provide scientific proof.

Thank you, Mr. Lane, for taking the time to review this information. As the Director of Consumer Affairs, I think you are a powerful force for the truth. I hope you will send me the studies I have asked for should you refute any of my statements or Mr. Gottstein's. I look forward to hearing from you again.

Respectfully,

Ruth Ehrenberg -- with input from:

============================
Jim Gottstein
Law Project for Psychiatric Rights
(PsychRights)
http://psychrights.org/
406 G Street, Suite 206
Anchorage, Alaska 99501
(907) 274-7686)
(fax) 274-9493)
jim@psychrights.org
============================

----- Original Message -----
From: Tom Lane
To: Ruth E Ehrenberg
Sent: Tuesday, August 19, 2003 9:50 AM
Subject: Re: Fw: studies?

Dear Ruth, thanks for your message and your efforts as an activist and advocate.

In regard to your request for NAMI and other groups, including the Surgeon General of the United States and the American Psychiatric Association, to “prove the biological basis of mental illnesses”, we reiterate the following points.

A much more thoughtful set of questions, currently the focus of study by thousands of scientists worldwide, concerns the precise role of biological processes as well as environmental factors in the etiology and expression of mental illness, and in the process of recovery. Those who honestly wish to shed light on these important matters recognize that a reductionistic approach to the challenge of mental illness in society is misguided.

Second, the work of advocacy for improved conditions for all people living with mental illnesses, for improvements to services and supports and for improved research on mental illness is the most important matter before us today and an urgent matter. With budget cuts occurring in every State, NAMI members have been called on to provide unprecedented amounts of direct assistance, education and support to individuals and families in crisis. It frankly makes us angry that those who have no record of constructive activities, services or advocacy, would seek to divert us from these efforts with frivolous and ultimately useless debates.

Finally, we reiterate our urgent invitation to all advocates and all citizens; join with us, work alongside us, to stem the tide of crisis and harm confronting people with mental illnesses in this country today because of lack of services and supports. We have the means and the science to provide relief and recovery; we simply need the will to do it.

Respectfully,
Tom Lane, Director
Office of Consumer Affairs
NAMI
2107 Wilson Blvd., Suite 300
Arlington, VA 22201
703-524-7600
tlane@nami.org
www.nami.org

Ruth E Ehrenberg wrote:

Dear Tom,

Along with this email, I have sent you a page that was published on the Internet during the time Brilliant Madness was being talked about. You will note that I asked the the panel about studies that prove that mental illness is a brain disease. If you read Dr. Hsaio's response, you will note that he does not answer my question with the called for studies. His answer is nothing short of evasive.

Do you have studies to prove that mental illness is a brain disease.... Is there a biological basis for mental illness?

Thank you,

Ruth Ehrenberg
Longmeadow, MA