Fwd: [SSRI-Research] NAMI Official Lashes Out at Hunger Strikers

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Tue, 26 Aug 2003 02:06:24 -0000

[sSRI-Research] NAMI Official Lashes Out at Hunger Strikers

 

NAMI Official Lashes Out at Hunger Strikers, Who Ask for

Apology or Resignation

 

NEWS: Your Mind & Human Rights - 25 August 2003

http://www.MindFreedom.org -- please forward

 

NAMI FINALLY FINDS ITS VOICE -- OF ANGER.

 

National Alliance for the Mentally Ill

Consumer Affairs Director Angrily

Denounces Hunger Strikers.

 

Tom Lane/NAMI says that NAMI is

" angry. " He accuses hunger strikers

of " no record of constructive activities,

services or advocacy. " He calls the

hunger strike " frivolous and ultimately

useless debates. "

 

PASADENA, CALIF.: For ten days, the Fast for

Freedom in Mental Health has apparently silenced

" The Nation's Voice on Mental Illness, " as the

National Alliance for the Mentally Ill calls itself.

 

Hunger strikers have simply requested even

one medical study from NAMI about one of their

most common statements to the public.

 

Now, even media have been unable to get a peep

from NAMI about this, one of their main claims,

that appears more than 100 times on their web-site:

 

" the biological basis of mental illness. "

 

But today a letter has surfaced from a NAMI

official that apparently displays some behind-

the-scenes feelings. The letter is from Tom

Lane, director of Consumer Affairs for NAMI,

to grandmother Ruth E. Ehrenberg. (See BELOW.)

 

Tom Lane says NAMI is " angry " about the

hunger strike. He accuses hunger strikers of

" no record of constructive activities, services

or advocacy. " He calls the hunger strike

" frivolous and ultimately usesless debates. "

 

Today, hunger striker David Gonzalez responds

to Mr. Lane, BELOW, by calling his accusation,

" highly misleading, presumptive and offensive. "

 

MindFreedom director, David Oaks, on behalf

the hunger strikers said:

 

" We request an immediate public apology from

Mr. Lane, or his resignation as NAMI Consumer

Affairs director. Mr. Lane has presented

himself to us as someone who says he welcomes

all opinions, that we should meet and work together.

But will the real Tom Lane please stand up? "

 

All MindFreedom alerts have requested that members

be civil in their contacts with NAMI. Oaks says

that anyone who is uncivil does not represent the

fasters. So far, no complaints have been received.

 

However, during the fast this is not the first problem of

offensive speech from NAMI. At about the same

day, one NAMI-MN board member e-mailed a faster

and called her " wacko. " He has since apologized to her.

 

ACTION:

 

If you are concerned about Mr. Lane's letter

about the fasters, you may e-mail a civil note to

director Rick Birkel at: rick. You may

e-mail a civil note to Tom Lane at: tlane.

 

~~~~~~~~~~~~

 

LETTER FROM HUNGER STRIKER TO NAMI

CONSUMER AFFAIRS DIRECTOR TOM LANE,

ABOUT MR. LANE'S LETTER DENOUNCING THE FAST.

 

25 August 2003

 

 

 

" David Gonzelz " David

 

Hunger Striker

 

Fast for Freedom in Mental Health

 

Pasadena, California

 

http://www.MindFreedom.org

 

To:

 

" Tom Lane, Director " tlane

 

NAMI/Office of Consumer Affairs

 

2107 Wilson Blvd., Suite 300

 

Arlington, VA 22201

 

Dear Mr. Lane,

 

As a hunger striker who has been deeply scarred

by the " unprecedented amounts of direct

assistance " forced upon me under the guise of

mental health, it would be unforgivable of me not

to respond to your letter datted August 19th, to

Mrs. Ruth Ehrenberg, the third day of our Fast

for Freedom in Mental Health.

 

You take the moral highground by claiming that:

 

" It frankly makes us (NAMI) 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. "

 

When you refer to " constructive activites,

services or advocacy " are you referring to forced

treatment?

 

Surely you're not referring to freedom of choice

or safeguarding the constitutionally guaranteed

rights of your constitutents.

 

In that context you're absolutely right! I have

no record of advocating for forced treatment, nor

do I approve of denying people their

constitutionally guaranteed rights under the

guise of " mental health. " I'm in the business of

advocating for peoples rights -- not exploiting

them when at they're most vulnerable.

 

You urge us to join you and to work alongside you

to:

 

" ...stem the tide of harm confronting people with

mental illnesses in this country today because of

lack of services and supports. "

 

I must respectfully disagree with you -- " the

harm confronting people with mental illnesses in

this country " is not the lack of services and

supports " -- the " harm confronting people with

mental illnesses in this country " is the lack of

medically ethical services (the lack of services

not driven by profit or convenience, but by

medical effectiveness and respect for human

rights).

 

The evasive response to our request for evidence

by NAMI and the APA makes that abundantly clear.

 

Futhermore, your reluctance to engage in

so-called " friviolous debates " is understandable,

considering that the billions of dollars being

diverted to NAMI, and other such private interest

groups would dry up should the truth behind your

forced treatment policies (under the guise of

mental health) be exposed.

 

And finally, that you should refer to me as an

individual with " no record of constructive

activities, services or advocacy " is highly

misleading, presumptive and offensive.

 

Maybe my definition of advocacy differs from

your, but if my work as an advocate for housing,

employment, and the rights of " the mentally-ill "

offends you, then it would be much more honest to

say that, then to engage in mud-slingling.

 

Should you truly want to know about my

" constructive activities " I would be glad to

forward a copy of my resume to you, or you can

simply logon to the bios page of the Fast for

Freedom Hunger Strikers, on the link included

below, so that you can get a true picture of who

I am.

 

http://www.mindfreedom.org/mindfreedom/bios.shtml

 

Respectfully, David Gonzalez

 

****************************************

 

LETTER FROM TOM LANE TO RUTH E. EHRENBERG,

IN RESPONSE TO HER EXPRESSION OF SUPPORT

FOR THE FAST FOR FREEDOM IN MENTAL HEALTH.

 

19 August 2003

 

" Tom Lane " tlane

 

Ruth E Ehrenberg

 

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

 

www.nami.org

 

~~~~~~~~~~~~

 

FOLLOW-UP LETTER FROM RUTH E. EHRENBERG TO

NAMI'S TOM LANE, IN RESPONSE TO HIS ABOVE E-MAIL

 

21 August 2003

 

" Ruth E Ehrenberg "

 

" Tom Lane " tlane

 

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

 

*********************************

 

PLEASE FORWARD.

FAST FOR FREEDOM IN MENTAL HEALTH

http://www.MindFreedom.org

--

 

David Oaks, Executive Director

MindFreedom Support Coalition International

454 Willamette, Suite 216 - POB 11284

Eugene, OR 97440-3484 USA

 

http://www.mindfreedom.org

email: oaks fax: (541) 345-3737

Fast for Freedom Headquarters Phone: (626) 795-5525

phone: (541) 345-9106 toll free in USA: 1-877-MAD-PRIDE

 

Fast for Freedom in Mental Health Has Started

16 August 2003 in Pasadena, Calif., USA.

 

MindFreedom is a project of Support Coalition

International, a Non-Governmental Organization

with Consultative Roster Status in the United Nations.

SCI is a non-profit that unites 100 sponsor groups

to win human rights & alternatives in mental health.