NAMI Promotes Misinformation

The National Alliance for the Mentally Ill (NAMI) is knowingly distributing misinformation about ECT and memory loss. Repeated attempts at communication regarding this issue have been ignored by NAMI, indicating that the organization cares little about the truth, and only about the continued spread of falsifications about ECT.

The article in question, "All About ECT," is used by NAMI to 'replace myth with fact.' It actually contributes to continued myths on ECT, rather than correcting them. And it misinforms the public it claims to educate, by attributing a widely used statistic to a credible source.

The article states that one half of 1 percent of ECT patients suffer severe memory loss. This is the famous "1 in 200" statistic that is widely circulated in promotional materials from ECT manufacturers and the American Psychiatric Association. The article says the figure comes from the NIH (although incorrectly calls it NIMH, confusing two federal agencies) Consensus Conference Statement on ECT.

In reality, the NIH Statement says that "research conducted as long as 3 years after treatment has found that many patients report that their memory was not as good as it was prior to the treatment."

Nowhere in the statement, does the "1 in 200," or one half of 1 percent, statistic occur. Instead, it says "many" report memory loss lasting 3 year. One half of 1 percent implies a very negligible amount, while many implies a considerable sum and percentage.

In June 1985, the National Institutes of Health, in conjunction with the National Institute of Mental Health, convened a Consensus Development Conference on Electroconvulsive Therapy. There, findings were presented regarding ECT, and for two days, discussions followed. A consensus panel representing psychiatry, psychology, neurology, psychopharmacology, epidemiology, law, and the general public considered the scientific evidence and agreed on a number of issues, including the risks of ECT.

The Conference developed an official statement on these issues, "The National Institutes of Health Consensus Development Conference Statement."

The "1 in 200" statistic is not included in the statement for one reason: it is not a valid statistic. Yet it is the statistic used in public relations materials for the ECT manufacturers, and in many informed consent forms. And it is the statistic that the American Psychiatric Association quotes.

Activists have known for a long time that this statistic was suspect. But recently, others have begun to question its validity. Journalists have uncovered facts that show the number has no basis in research, but is a number that researchers came up with based on their best guesses.

And recently, Dr. Max Fink, ECT researcher, practitioner and consultant to ECT manufacturers, admitted that he is responsible for the statistic. He claims it comes from a survey he did, in which he placed ads in newspapers, asking for participants. The problem is, as Fink has said, that he cannot remember what newspapers, or when he placed the ads. And he claims to have lost the data.

The American Psychiatric Association has also ignored requests for clarification on this matter. It continues to refuse to provide a source for the "1 in 200" figure.

Whether NAMI's incorrect attribution is a deliberate attempt to add credibility to an invalid statistic, or a simple, yet enormous, mistake, is something that only NAMI officials can fully explain.

"All About ECT" is excerpted from the book "Overcoming Depression" by Dr. Demetris Popolos.

Update: Harold Sackeim has now admitted on television that the statistic isn't based in science. View it here.

More on NAMI from Mother Jones magazine.

March 2001: NAMI continues to promote censorship and misinformation, including firing a NAMI editor because he tried to speak out. They even GLUED pages together, in a bizarre attempt to keep members from reading the materials. Even longtime NAMI members are starting to question this organization......

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