Testimony of Linda Andre, Director of Committee for Truth in Psychiatry - Testimony of Linda Andre

Written by Linda Andre

In my own study which I designed, I sent an questionnaire commonly used to assess brain injury, slightly modified to include the most common ECT symptoms, to our members, and every one of the 51 people who responded reported having at least some of the symptoms. Two-thirds had become unemployed due to ECT. 90% said they wanted and needed help with their cognitive and memory deficits, and had been unable to get it.

The United Kingdom Advocacy Network, a patients rights group in England, surveyed 308 survivors of ECT, one-third of whom had received forced shock. 60% of women and 46% of men found ECT damaging or not helpful. 73% reported permanent memory loss. 78% said they would never agree to ECT again.

Juli Lawrence's study of 41 survivors found that 70% had not been helped by ECT. 83% reported permanent memory loss, in some cases up to 20 years of amnesia. 64% reported permanent problems with memory functioning. 43% said ECT had caused permanent changes in cognitive abilities.

ECT Anonymous is the sister group to the Committee for Truth in Psychiatry in the UK. It is entirely made up of ECT survivors. They designed an extensive survey which as of 1999 has been completed by about 225 people. 82% reported permanent memory loss; 81% reported permanent memory disability; 50 to 80% reported permanent impairment in various cognitive abilities; 73% reported that ECT was not helpful in any longterm way. 76% were never able to return to their previous occupations.

MIND is a British charity which might be compared to our Mental Health Associations. In 2001, they published their survey of 418 ECT survivors. One-third had ECT against their will. 84% reported permanent adverse effects, including amnesia and cognitive deficits. 43% of the total found ECT unhelpful, damaging or severely damaging, and 65% said they would not have it again.

There is another adverse effect even more chilling than losing years of your life, and that is death. We don't have accurate national figures on deaths from ECT, because we don't collect any national statistics on ECT. Those that you may have heard are either an industry projection based on very old numbers (like the claimed "100,000 people get ECT a year) or a complete fabrication (like the death rate claimed by the APA). Only six states are required to report deaths from ECT, and not all of them have up-to-date figures. Texas is one state that has kept statistics in recent years, and they show a death rate of 1 in 200. In 1998, Illinois reported a death rate of 1 in 550. Yet patients are never told of these statistics.

A large retrospective study of 3,228 ECT patients in Monroe County, New York found that ECT recipients had an increased death rate from all causes. Another large study corroborated the fact that ECT survivors die sooner than mental patients who haven't had ECT. There is research to show that ECT survivors relapse more quickly than patients who were treated with drugs, and are much more likely to commit suicide. There is research that suggests that ECT survivors are more likely to develop Alzheimer's disease. There is no research on other longterm adverse effects of ECT, such as its longterm effects on the heart. If someone such as myself develops a heart condition at an early age, a condition for which there is no risk factor or family history, is this a result of ECT? No one's even looking into this.

To summarize what we know about adverse effects: 100% of persons who have ECT experience permanent memory loss, and a majority experience significant, extensive loss. Memory lost to ECT doesn't "return". NIMH looked at what the industry says and estimated that the average period permanently lost to ECT is eight months. That's an underestimate, as you'd expect. It is frequent, not rare, for persons to lose many years of their life to ECT, and for this loss to be permanently disabling. ECT commonly causes many of the other permanent effects typical of brain injuries, including loss of intelligence, permanently impaired memory functioning, and other cognitive problems which is sum amount to preventable disability.

What about efficacy? Are there benefits to ECT that can justify these risks?

Let's look at what the industry itself says. You may have heard a claim that ECT prevents suicide or saves lives. It doesn't. There is not one study to prove this. In fact, the industry-designed research shows the opposite: ECT has no effect on suicide, at least as far as preventing it. There are many, many studies that document suicide after ECT, often when researchers attempt to find their patients a month or three afterwards and can't find a certain percentage of their patients because they've killed themselves. Ernest Hemingway is just the most famous example of a suicide caused by ECT.

In 1985, NIMH looked at the published research---again, this is research largely done by the industry itself---and concluded that there was no evidence that ECT has any beneficial effects that last longer than four weeks. In 1992, two British psychiatrists presented a paper at an international conference, evaluating all the studies that had been done up to then---there have been none since---which compared real ECT to what's called sham ECT (anesthesia alone without electricity). They concluded that there is no evidence that real ECT is superior to fake ECT. Remember, in both cases all that was being evaluated was ECT's efficacy in depression, the condition for which is it supposedly most effective; ECT is commonly used for other conditions for which it is considered less effective, as in the case of Paul Henry Thomas.

ECT's lack of efficacy is a big public relations problem for the industry. In 2001, the industry's leading spokeman Harold Sackeim published a paper looking at what happens to patients who've had ECT. This study was based on research done from 1992 to 1998, and I remind you that this research was done in violation of federal law. I have also examined the grant file for this study, and I can tell you that the actual results reported to NIMH do not match the results revealed to the public in the published study. I can't tell you why, or what happened to the patients who were disappeared, except to ask you to look into it.

The point here is not that this study is good science, or that you should believe what it says, but that it was the best that the most prominent and best-funded spokesman of the ECT industry, using millions of our tax dollars, could come up with.

Of the roughly 290 people who were shocked for this study, half did not respond to ECT at all. That's a 50 percent response rate for the very definition of state-of-the-art, 21st century ECT. But in fact Dr. Sackeim cheated a bit, because he uses the special shock machines that he designs to put out twice as much electricity as patients normally get. This, as Sackeim would tell you, boosted the response rate higher than it would have been in clinical use----but it was still only 50%. (Correspondingly, when a study focuses on cognitive effects and not efficacy, researchers are able to turn down the electricity to less than is given in normal practice.)