1. Where can I find a facility that gives ECT?

I don’t have a master list of ECT providers. I am concerned, however, that you would be seeking out ECT on your own. It is unlikely that you would find a clinic or hospital that would give you ECT without a doctor’s recommendation.

This is something that should be discussed with your psychiatrist. Your doctor will know of facilities that perform ECT and will give you a recommendation if s/he feels ECT would be beneficial. If you do not have a relationship with a psychiatrist and wish to have ECT, you will have to find a psychiatrist who will fully evaluate you.

2. I had ECT and it was successful. Why is it necessary to put so much negative information on the web?

I am always curious about one thing when I get this question: if ECT was successful, why are you searching the Internet for ECT information? It seems to me that you would simply accept that it worked and move on to other more interesting pursuits. (I do not doubt your enthusiasm, but it’s something that has always puzzled me - I’m interested in responses!)

That said; why NOT put it on the web? I sincerely believe that patients should be told all sides of the ECT story before making their decision. Anything less is unfair and it’s patronizing.

“Until recently there appears to have been a general reluctance among psychiatrists to admit that ECT could cause memory or other cognitive problems that are severe, persistent and disabling.” This bold statement comes from a recent article in the British medical journal Advances in Psychiatric Treatment. (1)

The majority of people who find their way to ect.org AFTER ECT are at the very least disappointed. At worst, they’re devastated. If they had known before ECT that it causes a number of side effects (with discouraging efficacy and high relapse rates), they could have at least gone into it armed with information and lowered expectations. It’s less devastating to know the possibilities beforehand than to be caught completely blindsided. The latter leaves patients feeling deceived and swindled. That is much of the reason there is so much anger on the part of ECT patients who have a bad outcome. If they had clearly known the risks, they likely would have made the same decision to have ECT, but would not end up feeling so mislead.

Robertson and Pryor emphasized that “prospective patients should be warned of the significant risk of permanent amnesia and the possibility of permanent memory and cognitive disability.” (2)

You may have had a good outcome, but many do not. The negative side of ECT is discussed on ect.org to provide the full set of facts instead of the sanitized version many ECT practitioners choose to supply. Additionally, after a person is left bewildered, with no answers, this site provides a sense of fellowship with others, knowledge that they are not alone.

ECT is NOT a cure and any doctor who sells it as such is guilty of snake-oil salesmanship.

3. I told my doctor I searched the Internet and found information contrary to what s/he told me regarding ECT. His/her response was that the Internet is full of material not based on scientific facts and I should ignore it and stay off the web. Why would s/he be dishonest? What reasons could my doctor possibly have to hide these things from his/her patients?

Two simple answers followed up by more thorough discussion:

1. They are unaware or more commonly, don’t listen to their patients and have their heads in the sand.

2. They are paternalistic and think they know what’s best for you. They know if they provided a full set of facts, some patients would reject ECT.

Neither explanation means that your psychiatrist is a demon or a bad doctor. The very nature of psychiatry is based on paternalism, a view that you are mentally ill and therefore are incapable of decision-making. By removing some of the variables (information), your decision is easier to make. Unfortunately, this point of view is strongly rooted in psychiatry and in the public perception. That doesn’t make psychiatrists bad, just old fashioned and in need of a makeover.

Paternalism

“Persons with mental illness cannot make decisions on their own.” Most are lumped into that category. Yes, there are some individuals who are so ill they cannot function and make a decision. But you are obviously well enough to surf the Internet, to perform a search and find ect.org, and you’re well enough to compose an email to me, type in the email address and operate your computer to send the mail. You’re very likely well enough to make an informed decision, based on ALL the facts, not the selected few chosen by the person in charge.

There is a debate within the ECT industry concerning when ECT should be prescribed. Should it be used early in a depressive episode, or saved for those who are the most severely ill, desperate and treatment resistant? One of the leading psychiatrists in the latter camp once said that if a person is well enough to surf the Internet, he or she is not ill enough to consider ECT. (Many would disagree with that statement, but I toss it out as an interesting observation.)

Without a clue

I did a small research study called “Voices” a decade ago. An unsurprising finding from that study was that when ECT patients tell their doctors that they HAVE suffered devastating memory loss and other side effects, the doctors dismiss their complaints. But there was a highly surprising finding: many of those patients get frustrated at their psychiatrists but feel trying to convince them of the existence of the effects is futile. They move on to a new psychiatrist, or give up on psychiatry completely.

That treating psychiatrist, who has already discounted that they had side effects, never sees the individual again. S/he logically assumes that the person got better and moved on. Another success story! And since the doctor had not listened to the patient’s complaints, those complaints are never registered in the psychiatrist’s mind, and therefore, do not exist.

You can make up a variety of scenarios regarding the psychiatrist’s thinking along that path, but the bottom line is that to the psychiatrist, that patient did not have side effects. It’s a misperception, based on a refusal to acknowledge the patient’s complaints, but the doctor probably genuinely does not know it.

The second scenario is of course knowing the truth, but failing to share it. That sounds a bit more devious that I believe it is. I don’t think it’s a case of an evil doctor knowing and not telling because s/he’s a bad person. I think it’s just more of a case of this paternalism I keep talking about, a view that the doctor knows what’s best for you, so why bog you down with too much information, particularly negative information.

Another possibility is that your doctor simply has not kept up with the literature. What your doctor may consider “scientific fact” may be the statistic that has been quoted for many years, that only 1 in 200 persons suffer severe memory loss. Several years ago, that statistic was shown to be, depending on your point of view, either misleading or an outright lie. Harold Sackeim, considered the King of ECT, admitted it on a television show, although it softened the blow by calling the number “Impressionistic.”

impressionistic:

adjective

1. of or relating to or based on an impression rather than on facts or reasoning; “a surprisingly impressionistic review bearing marks of hasty composition”; “she had impressionistic memories of her childhood”

In more recent writings and testimonies, Mr. Sackeim has said that now it’s known ECT does, in fact, cause severe memory loss much more often than has been acknowledged. In his defense, he said the industry “Just didn’t know,” and that he has been trying to get industry leaders and doctors in the field to acknowledge what is now known.

For seventy years, patients have been reporting the same complaints, but “they just didn’t know.” Sackeim claims that they only discovered the hard science a few years ago.

The information is now out there, it’s being published, and your doctor’s only excuse will soon be that s/he’s not keeping up with current literature.

If your doctor is promoting ECT as a cure for depression, consider that a red flag and get a second opinion. Even the most enthusiastic ECT cheerleaders will tell you it’s most often a temporary fix, one that will require regular treatments indefinitely.

References:

1. Mangaoang, M. & Lucey, J. (2007) Cognitive rehabilitation: assessment and treatment of persistent memory impairments following ECT. Advances in Psychiatric Treatment, 13, 90-100.

2. Robertson, H. & Pryor, R. (2006) Memory and cognitive effects of ECT: informing and assessing patients. Advances in Psychiatric Treatment, 12,228-237.

The Press (New Zealand)
Feb 7 2007
By KAMALA HAYMAN

The elderly, women and people with lower IQs are the most vulnerable to brain damage, particularly memory loss, according to the first large-scale study on the long-term effects of electroconvulsive therapy (ECT).

About 300 patients a year are given ECT in New Zealand. Two-thirds are women and about 60 per cent are over the age of 50.

In a report released last year, the Health Ministry said ECT was “a valuable and sometimes life-saving” treatment for depression, mania and catatonia, although its effects were typically short-term.

In the New York study, just published in the Neuropsychopharmacology international journal, researchers followed 347 patients for six months.

The research team, led by Harold Sackeim, said the study provided the evidence that “adverse cognitive effects can persist for an extended period and that they characterise routine treatment with ECT”.

The “more severe and persisting” memory problems were found in those given ECT to both sides of the brain, leading the team to conclude there was “little justification” for such treatment.

Some patients were given ECT to only the right side of the brain, to protect the memory centre in the left.

Auckland clinical psychologist John Read said some New Zealand patients were still being given ECT on both sides of the brain.

Read, a long-standing campaigner against the use of ECT, has sent a second petition to the parliamentary health select committee calling for a ban on the treatment in older people, pregnant women and those under 18.

Read said the beneficial effects of ECT were short-term and there was no evidence it saved lives by preventing suicide.

He said patients given ECT should be told: “It does make some people feel better for a short period of time and it causes permanent brain damage for a significant proportion of people.”

A Christchurch 53-year-old, given ECT for severe depression last year, said she had consented to her 12-dose treatment but did not believe it was informed consent as she was not warned of the risk of permanent memory loss. “I have lost my long-term memory and I have lost totally the ability to administer and organise things,” she said.

Despite the “dreadful” side-effects, the woman, who did not want to be named, said ECT was a valuable treatment. Severe depression was not only life-threatening, it was a horrendous experience. “I was like the walking dead.”

She said her depression returned several months after the ECT, although it had since lifted, possibly due to acupuncture and meditation.

Canterbury psychiatric patients are among the most likely in the country to have ECT. In the year to June 2005, 79 Canterbury patients had a course of ECT, about one-quarter of the 307 treated nationally.

Health select committee chairwoman and Green MP Sue Kedgley said ECT was a “barbaric and old-fashioned technique” used in New Zealand with little regulation, monitoring or evaluation. The number of patients given ECT varied wildly in different parts of the country, as did the length of each course.

Kedgley was concerned that one in five patients had ECT without giving consent, and the rate was above 50% in some districts.

“If it is going to cause the harm that this research shows, then I certainly question why it should be given to people without their consent,” she said.

Canterbury psychiatrist Richard Porter, who oversees ECT use, said one-sided (unilateral) ECT was usually prescribed unless treatment was particularly urgent or there was no response to unilateral ECT.

“The choice is discussed with patients and family and the pros and cons explained before the decision is made,” he said. This particularly applied to the elderly, in whom it had been “known for a long time” that memory loss was more likely, he said.

———–

Forbes
Electroconvulsive Therapy Causes Permanent Amnesia and Cognitive Deficits, Prominent Researcher Admits
12.21.06, 3:38 PM ET

NEW YORK, Dec. 21 /PRNewswire-USNewswire/ — In a stunning reversal, an article in the journal Neuropsychopharmacology in January 2007 by prominent researcher Harold Sackeim of Columbia University reveals that electroconvulsive therapy (ECT) causes permanent amnesia and permanent deficits in cognitive abilities, which affect individuals’ ability to function.

“[T]his study provides the first evidence in a large, prospective sample that adverse cognitive effects can persist for an extended period, and that they characterize routine treatment with ECT in community settings,” the study notes.

For the past 25 years, ECT patients were told by Sackeim, the nation’s top ECT researcher, that the controversial treatment doesn’t cause permanent amnesia and, in fact, improves memory and increases intelligence. Psychologist Sackeim also taught a generation of ECT practitioners that permanent amnesia from ECT is so rare that it could not be studied. He asserted that most people who said the treatment erased years of memory were mentally ill and thus not credible.

The National Institute of Mental Health (NIMH) estimates that more than 3 million people have received ECT over the past generation. “Those patients who reported permanent adverse effects on cognition have now had their experiences validated,” said Linda Andre, head of the Committee for Truth in Psychiatry, a national organization of ECT recipients.

Since the mid-1980s, Sackeim worked as a consultant to the ECT device manufacturer Mecta Corp. He never revealed his financial interest in ECT to NIMH, as required by federal law, and, until 2002, did not reveal it to New York officials as required by state law. Neuropsychopharmacology has endured negative publicity over its failure to disclose financial conflicts of journal authors, resulting in the editor’s resignation and a promise to disclose such conflicts in the future; yet there is no disclosure of Sackeim’s long-term relationship with Mecta, nor did Sackeim disclose his financial conflict when his NIMH grant was renewed to 2009 at approximately $500,000 per year.

The six-month study followed about 250 patients in New York City hospitals, an unusually large number; most ECT studies are based on 20 to 30 patients. Sackeim’s previously published studies were short term, making it impossible to assess long-term effects. “However, in other contexts over the years — court depositions, communications with mental health officials, and grant protocols — Sackeim has claimed to follow up patients for as long as five years. This raises serious questions as to how long he has actually known of the existence and prevalence of permanent amnesia and why it wasn’t revealed until now,” Andre said.

Besides finding that ECT routinely causes substantial and permanent amnesia, the study contradicts Sackeim’s oft-published statements that ECT increases intelligence and that patients who report permanent adverse effects are mentally ill.

“The study is a stunning self-repudiation of a 25-year career,” Andre said.

———————————————————-

Other publications that have picked up the story:

Dec 22 2006:

Forbes
Medical News Today
Brietbart
Dallas News
Kron.com
MedicalDevices.org
TXCN.com - Healthcare & Hospitals
WFAA
Philadelphia Weekly
Genetic Engineering News
Pharma-Lexicon

The Cognitive Effects of Electroconvulsive Therapy in Community Settings

NIMH-funded research study published in the January 2007 issue of Neuropsychopharmacology

Author and primary investigator: Harold Sackeim

Funding: NIMH grants

#35636, Affective and Cognitive Consequences of ECT, funded since 1981 for a total of approximately ten million dollars so far (grant has been renewed through 2009)

#59069, ECT Practices in Community Settings—Evaluating Outcomes, funded since 1999 for a total of approximately 3.5 million dollars so far

Summary: After 25 years and millions of dollars of federal funding to research the adverse cognitive effects of ECT—25 years in which not one single longterm followup study was ever published—self-proclaimed “world expert” on ECT Harold Sackeim has now reversed his position, admitting that ECT routinely causes permanent memory loss and deficits in cognitive abilities. His new study—the first to be published in which he followed patients as long as six months, and one of his only studies to use controls—validates a generation of patient reports of permanent iatrogenic disability, and disproves Sackeim’s previously published claims that these reports were simply symptoms of mental illness. Other findings: there is no evidence that ECT increases intelligence, as Sackeim has previously claimed; and women are much more likely than men to experience severe permanent amnesia.

Significance: Harold Sackeim has been called the Pope of ECT, and for good reason. He’s published more on ECT than anyone in the world, has received more money to research it than anyone in the world, and is the author of the American Psychiatric Association’s patient information statement and consent forms, which are used by most hospitals in America. Through his writing, teaching, testimony—and positions on peer review, editorial, and funding boards, including NIMH grant review panels—he has more influence on what the profession and the public believe about ECT than anyone in the world. What Harold says goes.

Conclusion: This study could have been done at any point in the past 25 years. If it had, a generation of patients could have been warned of the likelihood of permanent significant memory and cognitive deficits before, instead of finding out after, ECT. In fact, there is evidence—from Harold’s own statements—that over the years he has in fact conducted studies following up ECT patients for a long as five years…but never published the results. Why not? Why did it take 25 years and over ten million dollars to validate what patients have been saying all along? In other words: What did Harold know, when did he know it, and why wasn’t it revealed?

Quotable quote from the study: This study provides the first evidence in a large, prospective sample that the adverse cognitive effects can persist for an extended period, and that they characterize routine treatment with ECT in community settings.

For a detailed critique, see below.

For the past 25 years, patients who received electroconvulsive therapy (ECT) have been told by the nation’s top ECT doctor that the controversial treatment doesn’t cause permanent amnesia or cognitive deficits and, in fact, improves memory and increases intelligence. Psychologist Harold Sackeim of Columbia University also taught a generation of ECT practitioners around the world that permanent amnesia is so rare it could never be studied. Sackeim was the popularizer if not originator of the position that former patients who said the treatment erased memory were simply mentally ill and thus not credible.

His newest and perhaps last ECT research study disproves his tenaciously held claims about the treatment’s harmlessness. It is, in effect a stunning self-repudiation of a 25-year research career…one in which he accepted federal research money with one hand and consulting fees from shock machine companies with the other.

See, for instance, the key finding:

This study provides the first evidence in a large, prospective sample that the adverse cognitive effects can persist for an extended period, and that they characterize routine treatment with ECT in community settings.

Similarly, from the abstract:

Despite ongoing controversy, there has never been a large scale, prospective study of the cognitive effects of electroconvulsive therapy

Sounds like the research team is congratulating itself for being “the first,” as if they’d made a discovery before anyone else, doesn’t it? You might think that…if you didn’t know that Sackeim has held the only available NIMH research grant to study ECT’s adverse effects, titled “Affective and Cognitive Consequences of ECT,” continuously since 1981…and if you didn’t know what Sackeim promised the federal government in his original application for grant funding:

“The major objective of the proposed research is to examine the effects of bilateral and right unilateral electroconvulsive therapy on affective and cognitive functioning. The consequences of the two treatment modes will be studied in regard to neuropsychological functions that have previously not been studied…Drug-free inpatients presenting major unipolar depressive disorder will be tested before, during and after treatment and a matched normal control group will be tested at comparably spaced times.”

Instead of doing this, however, he used his grant money largely to compare different types of ECT to each other, not to examine the effects of ECT; and only less than a handful of his 200+ published studies used normal controls, an absolute necessity to isolate the effects of ECT.

Why did it take 25 years to conduct one large, long-term controlled follow-up study? And in the absence on this research, why did Harold so confidently assure professionals, patients, legislators, and the public that ECT was safe?

A closer look at the study shows us that, in fact, Harold and his team are still not being honest with us, still not revealing all they know. They tried their damnedest not to find out what ECT really does…but failed. Here they reveal only the minimum information they had to concede after using every trick in the book to bias their research in favor of not finding negative effects of ECT.

What tricks did they use here?

1) The assumption that ECT does not cause permanent amnesia and cognitive deficits was built into the design of the study. How so? The study allowed subjects who’d had ECT before, as recently as two months prior, to be counted as the “before ECT” patients–meaning before this course of ECT. It assumed that any effects of ECT resolve within two months. 43% of the subjects had had prior ECT, so that at least half of the data involved comparing the effects of ECT to the effects of more ECT–not isolating the effects of ECT.

2) The outcome measures used to measure amnesia and cognitive function are irrelevant and inadequate to measure the known effects of ECT. Yet even deliberately using measures that would result in underestimating deficits, these deficits were still found to be profound and persistent!

For a critique of the tests used by Sackeim, see Robertson and Pryor’s article, Memory and cognitive effects of ECT: informing and assessing patients, in Advances in Psychiatric Treatment (2006), vol. 12, p. 228-238. For example, the Mini Mental Status exam used by Sackeim is a test that screens for dementia, the grossest and most glaring form of cognitive disability, and is useless for detecting the kinds of deficits caused by ECT.

Sackeim uses a memory test he invented himself, the Autobiographical Memory Inventory. This test is unpublished, not publicly available, not validated, and is not used except by ECT advocates. Robertson and Pryor note that the majority of questions are not relevant to the types of information forgotten by ECT survivors, nor can the test detect amnesia beyond a one-year period. A string of references in Sackeim’s new article attempt to provide support for the claim that the AMI “has shown strong reliability and validity as a measure of retrograde amnesia.” Not only do they not show this, but all the referenced articles were written by Sackeim himself!

3) Patient IQs were estimated pre-ECT using a method that underestimates intellectual ability especially with much higher than average IQs; no attempt was made to ascertain actual IQ. No one looked at these patients’ IQs post-shock to see what happened to them; why not?

Sackeim et al. conclude, based on inaccurate assumptions and no data from these or any other patients, that “Individuals with greater premorbid abilities can better compensate for the impact of ECT on cognitive functions” (references claiming to support this point have nothing to do with ECT but are articles about an unproven theory of “cognitive reserve”).

Even if the researchers didn’t choose to seek out survivors of ECT who once had very high IQs, or to respond to the many survivors of formerly superior IQs who have contacted them, there is a substantial record of accounts by persons who had extremely high or genius IQs who have spoken and written publicly of the devastating effects of having those IQs lowered by ECT (Jonathan Cott, Linda Andre, Anne Donahue, and Marilyn Rice are four such individuals.) None of these accounts suggests that people with “greater premorbid abilities” have an easier time after ECT; in fact, they strongly suggest the opposite.

In addition to these tricks, the researchers used one of the most reliable methods of biasing results: concealing data.

1) “A substantial number of secondary cognitive measures” are said to have been administered along with the named tests, yet the researchers nowhere reveal what they were and what the results were.

2) The names of the seven facilities in the New York City metropolitan area are not revealed. While this isn’t necessary for evaluating the results of the study, it means the facilities with the worst outcomes can’t be held publicly accountable, nor can the millions of city residents protect themselves from the worst offenders.

3) The results of the cognitive tests on the 24 control subjects are not revealed, nor is how they compared to the people who had ECT.

It’s a very big deal for the Sackeim team to use matched normal controls; in 25 years and hundreds of studies they have not done so. Normal controls are essential to ethical and valid research. This article states that “The comparison sample completed the same neuropsychological battery at time points corresponding to the assessment period in patients.” But you search in vain to find out how the controls did on the five named tests of memory and cognitive functioning and the unnamed “secondary measures”, and how they compared to the ECT patients immediately and six months after ECT. It’s not in the text, and it’s not in the tables. So why have the controls take the tests at all, if you’re not going to reveal the results?

Only one thing is revealed: The normal controls did much better than the bilateral ECT patients on the (flawed) measure of amnesia:

“The average decrement in AMI-SF scores in patients treated exclusively with BL ECT was 3.4 and 2.8 times the amount of forgetting seen in the healthy comparison groups at the post-ECT and 6-month time periods, respectively, suggesting that the deficits were substantial.”

4) Sackeim does not reveal—has never revealed in hundreds of published articles—his financial ties to the shock machine companies Mecta and Somatics. Yet in sworn testimony, Sackeim admits he has worked for Mecta for at least twenty years. He designs their shock machines for them. Not only is disclosure required by journals such as Neuropsychopharmacology (ironically, the subject of a recent scandal in which authors and even the journal’s editor did not reveal their ties to another company which has hired Sackeim, Cyberonics), it is also required by state law (because Sackeim is an employee of New York State) and federal law (because Sackeim accepts NIMH money).
Sackeim flaunts these laws by not disclosing the money he makes from the shock machine manufacturers.

This article is a damning critique of work done over 25 years (and at the expense of millions of taxpayer dollars) by this very team of researchers.

If you know that Sackeim’s been funded for decades to do this research and chose not to do it, the following statements read very differently than the researchers intended. Instead of self-congratulation, they read as condemnation.

“Empirical information about ECT’s long-term effects derives mainly from small sample studies conducted in research settings, with follow-up intervals limited to two months or less…These studies could not adequately assess the severity and persistence of long-term deficits.”

The use of small samples and short-term follow-up characterizes all of Sackeim’s work until now, and was their choice, deliberately made so as not to know (officially) about “the severity and persistence of long-term deficits.” These researchers single-handedly had the wherewithal to address these belatedly-acknowledged flaws in their own research at any time since 1981.

“We conducted the first large-scale, prospective study of cognitive outcomes following ECT.”

Why the first study only after 25 years? What of the generation of patients—two and a half million people according to their own estimate—who have received shock in those years without knowing the long-term consequences?

“Severity of depressive symptoms showed little relationship with the cognitive measures. At the post-ECT time point, none of the 11 measures were related to concurrent HRSD scores. Findings were also negative for 8 of the 11 measures at the six-month follow-up.”

Translation: patients aren’t just imagining or lying about their cognitive and memory deficits because they’re crazy. Yet in many published articles written on the NIMH dime, and over and over in public testimony and in court, that is exactly what Sackeim and Prudic have claimed. And they have influenced countless others to believe it.

DAMNING FINDING #1: amnesia is substantial and permanent

“The average decrement in AMI-SF scores in patients treated exclusively with BL ECT was 3.4 and 2.8 times the amount of forgetting seen in the healthy comparison groups at the post-ECT and 6-month time periods, respectively, suggesting that the deficits were substantial.”

“At the six-month time point, there continued to be a significant relationship between the number of BL ECT treatments and the extent of retrograde amnesia.”

“Greater amnesia for autobiographical events was significantly correlated with the number of ECT treatments received 6 months earlier.”

DAMNING FINDING #2: cognitive deficits are substantial and permanent

“Compared to baseline performance, at the postECT time point the total patient sample showed deficits in the mMMS, sensitivity of the CPT, delayed recall of the BSRT, delayed reproduction on the CFT…” (All are measures of memory and cognitive ability).

“This study provides the first evidence in a large, prospective sample that the adverse cognitive effects can persist for an extended period, and that they characterize routine treatment with ECT in community settings.”

DAMNING FINDING #3: ECT permanently affects reaction time

“Although psychomotor function is of practical importance with respect to driving and other motor activities, the impact of ECT on this domain has rarely been examined…”

(Once again: Whose fault is that?)

“The fact that relative reaction time deficits were observed at the 6-month follow-up indicates a persistent change in the speed of information processing, motor initiation, or response levels…The findings here raise the concern that this form of stimulation has deleterious long-term effects of elemental aspects of motor performance or information processing.”

DAMNING FINDING #4: Bilateral ECT is no good

“For decades, BL ECT represented the gold standard with respect to ECT efficacy…A majority (of US ECT practitioners) administer mainly or exclusively BL ECT…
There appears to be little justification for the continued first-line use of BL ECT in the treatment of major depression.”

(More than 90% of the ECT given in the U.S., and at least as high a proportion in other countries, is bilateral.)

DAMNING FINDING #5 They lied when they wrote in the APA consent form that ECT improves your memory

What this team has said in numerous published articles—and what Sackeim wrote into the American Psychiatric Association guidelines on ECT, the “bible” used by all rank and file shock doctors—that ECT improves memory and intelligence, is not true.

“It is noteworthy that most cognitive parameters were substantially improved at 6-month follow-up relative to pre-ECT baseline, presumably because of the negative impact of the depressed state on baseline performance…It cannot be concluded, however, that the extent of improvement in any group returned to premorbid levels.”

DAMNING FINDING #6: A much greater percentage of women than men are damaged by ECT than men: 81% vs. 18%.

“There was a gender difference, with a greater preponderance of women (81.6%) compared to men (18.4%) in the persistent deficit group.”

No doubt Sackeim and his handlers will try to “spin” this study as a scientific breakthrough, and hold him up as a reformer and patient advocate. Nothing could be farther from the truth.

Where is the apology to the generation of people who were lied to, who will never regain their memories and their cognitive abilities?

Full study

Advances in Psychiatric Treatment (2006), vol. 12, 228 238

Harold Robertson & Robin Pryor

Abstract:

Over the past few years electroconvulsive therapy (ECT) has come under increased scrutiny in the UK, with the first systematic review of patients’ experiences and new national guidelines. Our aim in this article is to translate recent and sometimes confusing research and policy statements into practical guidance that benefits patients. We examined the evidence on the permanent memory and cognitive effects of ECT, with a focus on delineating their nature, understanding how ECT may cause them, informing prospective patients about them, and assessing their impact on former patients. We describe a simple and effective method for assessing retrograde amnesia. Data do not exist at this time to confirm the mechanisms by which ECT exerts its adverse effects, but clinicians should fully inform patients of the possible permanent adverse effects of the treatment, which include amnesia, memory disability and cognitive disability, and should provide follow-up testing using relevant instruments.

In January 2002, as part of a review of electroconvulsive therapy (ECT) undertaken by the UK’s Department of Health, the Service User Research Enterprise (SURE) published the first-ever systematic review of patients’ views on ECT (Service User Research Institute, 2002). The review encompassed several large-scale surveys by or of people who had received ECT in the UK (United Kingdom Advocacy Network, 1996; ECT Anonymous, 1999; Pedler, 2000). In April 2003, the National Institute for Clinical Excellence (now the National Institute for Health and Clinical Excellence, NICE) issued guidance on the use of ECT, and at the same time, the UK ECT Review Group published a review of its safety and efficacy (National Institute for Health and Clinical Excellence, 2003; UK ECT Review Group, 2003). The Royal College of Psychiatrists has established the ECT Accreditation Service and revised its guidelines for practitioners to take into account the NICE advice (Royal College of Psychiatrists, 2005).

Some of the conclusions to come out of the new work - in particular, that at least one-third of patients experience permanent amnesia (Service User Research Institute, 2002; Rose et al, 2003; Scott, 2005), that half of patients had not received an adequate explanation prior to treatment (Rose et al, 2003, 2005; Philpot et al, 2004) and that newer methods of ECT have not resulted in an appreciable decrease in adverse effects (UK ECT Review Group, 2003) - suggest that changes are overdue in both practice and policy.

The new evidence presents opportunities for improving clinical care in several areas: delineating the nature of ECT’s permanent adverse effects; developing adequate and relevant tools to assess patients; and providing consent that is fully informed.

Defining deficits

It is evident from a close reading of patient reports such as those documented by SURE that ‘memory’ is too simple a term to encompass the range of ECT’s permanent adverse effects, yet there has been almost no work done on improving terminology (Box 1). The confusion goes back to the first instrument specifically designed to assess people given ECT, the Squire Memory Questionnaire (SMQ; Squire et al, 1979). The SMQ was developed to distinguish between the cognitive impairments associated with depression and those caused by ECT. Although Squire and his colleagues believed that they had done this (Squire & Slater, 1983; Squire & Zouzounis, 1988), others have not used the test for its intended purpose, and it is hard to say whether the SMQ has muddied the water more than it has cleared it. Although often spoken of as if it measured a unitary entity ‘memory’, the SMQ actually encompasses multiple dimensions of cognition: attention, alertness, concentration, learning. It does not at all address the most common effect of ECT, which is variously called amnesia, retrograde amnesia or memory loss. By these terms is generally understood the obliteration of a specific time period in a person’s life.

It is when ‘memory’ is used as a shorthand term for both retrograde amnesia and ongoing difficulties with memory function in the present that confusion ensues, a confusion that intensifies when the latter is sometimes called ‘anterograde amnesia’. Although most will understand anterograde amnesia to mean ongoing memory disability, this is not always the case. The US National Institute of Mental Health has defined anterograde amnesia as the inability to remember events that happened after ECT (National Institutes of Health, 1985) and the College’s new handbook (Royal College of Psychiatrists, 2005) appears to use it in the same way.

To confuse matters further, the term ’short-term memory loss’ is sometimes used as a synonym for anterograde amnesia. Short term to some will mean temporary, to others it will be seen as a description of the type of memory that is affected - the ability to retain information for a short period, or working memory (Baddeley & Hitch, 1974) - which says nothing about its longevity. The term ‘temporary’ rather than ’short-term’ should always be used to refer to effects that resolve, but even then it should be used with caution because neuropsychology recognises that transient impairment of cognitive function may have residual permanent effects. ‘Dysfunction’ or ‘disability’ should be used rather than ‘loss’ (which implies a one-time event) to refer to ongoing difficulties with memory ability and cognition.

If the term anterograde amnesia must be used, it should be clearly defined as difficulties with memory in daily life, and examples given (Box 2).

Inevitably, memory overlaps with and subsumes other cognitive functions, such as learning and attention as well as overall intelligence. When individuals who have had ECT report ongoing memory disability, it is necessary for a clinician
trained in neuropsychological evaluation to tease out the roles played by attention, concentration, overall slowed mental processing and deficits of executive function such as inability to shift mental set. The ECT psychiatrist and treatment team may not be trained in neuropsychological evaluation, since outside of research settings it is not routinely performed on people who have had ECT. When it is, it is usually initiated by the patient, not the doctor. Because of this, the treating psychiatrist may fear personal liability and thus be unwilling to attribute deficits to ECT.

It has long been known that ECT can produce deficits in non-memory-related cognitive function (Calev, 1994). However, long-term studies comparing controls and people who have had ECT to determine when and if non-memory cognitive function normalises after ECT have not been done. A comprehensive battery of neuropsychological tests carried out on individuals who had had ECT between 9 months and 30 years previously revealed impairment on a range of measures, even after controlling for the effects of illness and medication (Freeman et al, 1980).

Despite recommendations that psychiatrists inform patients of non-memory cognitive after- effects (Calev, 1994) and warn them that ‘they are not going to function well on more tasks than they anticipate’ (Calev et al, 1995), patients are still routinely not informed about these effects; there is no mention of them in the recommended consent forms of the American Psychiatric Association (APA; 2001), the Royal College of Psychiatrists (2005: Appendix 1V) or the manufacturers of ECT equipment. This may contribute to the consistent findings (Rose et al, 2003, 2005; Philpot et al, 2004) that half of people given ECT say they did not receive an adequate explanation of the treatment.

The current APA consent forms not only contain no warnings about adverse effects on cognition, but advise that ‘Most patients report that memory is actually improved by ECT’ (American Psychiatric Association, 2001). This statement is contradicted by all service-user research as well as the findings of SURE (2002) and NICE (2003); indeed, Scott (2005) remarked that NICE took ’special note of the evidence from users that cognitive impairment after ECT often outweighed their perception of any benefit from it’.

Is it depression?

If the task of assessing amnesia, memory disability and cognitive deficits is left to a patient’s treating psychiatrist, there may be a tendency to attribute all deficits, without evaluation, to depression, even when the patient has fully recovered. The APA guidelines state that

‘Patients with the greatest symptomatic benefit from
ECT typically report the greatest improvement in
subjective evaluations of memory. Thus, when patients
report subjective memory impairment after ECT, their
mood as well as their cognition should be assessed’
(American Psychiatric Association, 2001: p. 72).

It seems that this statement is based on SMQ scores from six studies: Pettinati & Rosenberg, 1984; Weiner et al, 1986; Mattes et al, 1990; Sackeim et al, 1993 and Coleman et al, 1996, which involved the same patients; and Sackeim et al, 2000. On average, patients reported improvement in cognitive functions assessed by the SMQ within 1 week of ECT. However, the following should be taken into account: first, the improvement was relative only to immediate pre-ECT status, not baseline, thus in fact reflecting a net impairment; and second, objective testing revealed that the patients were in fact cognitively impaired post-ECT. There are other studies in which patients reported impairment post- ECT on the SMQ (Squire et al, 1979; Squire & Slater, 1983; Squire & Zouzounis, 1988). To the extent that a handful of studies support a claim of correlation between memory and cognitive self-rating and mood during or immediately after ECT, there might be a correlation between relatively improved memory self-rating and improved mood. There is no evidence of a correlation between impaired memory/cognition after ECT and impaired mood, much less a causal relationship. The problem of premature assessment There are many reasons why hospitalised patients who have received ECT might overestimate their abilities. After each treatment they experience acute organic brain syndrome (Sackeim, 1986). In hospital, they are not exposed to even minimally taxing actions such as shopping and driving. There are no environmental cues as to what they are expected to know and remember in their roles outside the hospital. In a few days or even weeks, patients cannot gain enough experience of using their minds and memories to accurately assess their altered capacities (Weiner et al, 1986; Coleman et al, 1996; Donahue, 2000). In the longer term, i.e. 2-6 months, patients who initially rated their memory and cognition as improved, experience and accurately report impairment (Weiner et al, 1986; Coleman et al, 1996).

More recent work using the SMQ suggests that, in the short term as well, patient ratings of memory function are negative and are correlated with the results of objective tests, even when controlling for the level of depression. These researchers say that patient reports of memory impairment ‘must not be dismissed as being depressive complaints only’ (Schulze-Rauschenbach et al, 2005).

Differentiating the effects of ECT

Although terms such as memory loss are often used interchangeably by clinicians to describe the temporary effects of depression on cognition (especially attention) and the long-lasting effects of ECT on a range of cognitive functions, this confusion is unnecessary and could be avoided. The effects of ECT are quantitatively and qualitatively different from those of depression (Squire et al, 1979) and researchers have consistently distinguished between them (Cronholm & Ottoson, 1963; Squire et al, 1979; Squire & Slater, 1983; Pettinati & Rosenberg, 1984; Squire & Zouzounis, 1988). Numerous controlled studies show that individuals who are depressed but have not had ECT do not suffer amnesia (Janis, 1950;

Weiner et all 1986). People who have experienced the effects of both depression and ECT rarely mistake one for the other (Food and Drug Administration, 1982; Donahue, 2000): ECT’s effects are different and worse, they occur only after ECT and they persist in the absence of depression and drugs.

Possible mechanisms of action

How might ECT cause permanent amnesia and memory and cognitive disability? There are several theories (Box 3). One is that memory is affected because the applied electrical current is densest in the medial temporal area structures associated with memory, including the hippocampus; these areas have low seizure thresholds. However, this has not been studied directly (Calev, 1994).

Other theories focus on ECT’s effects on brain metabolism and neurochemistry: breach of the blood-brain barrier and increased cerebral blood pressure (Bolwig et al, 1977; Taylor et al, 1985); regional increases in T2 relaxation times (Diehl et a!, 1994); disturbance of the long-term potentiation mechanism (Sackeim, 2000; Rami-Gonzalez et al, 2001); excessive release of excitatory amino acids and activation of their receptors (Chamberlin & Tsai, 1998; Rami-Gonzalez et all 2001), and decreased cholinergic transmission (Khan et al, 1993; Rami- Gonzalez et al, 2001). Even temporary alterations in any of these may have permanent effects on the brain.

Since ECT affects both temporal and frontal lobes, it is logical that its effects would not be limited to amnesia, but would involve both memory and non-memory neuropsychological functions (Calev et al, 1995). Sackeim (2000) hypothesises that the traditional view that amnesia results from damage to medial temporal lobe structures alone may be wrong, since it is known both that frontal lobe damage can result in amnesia as extensive as that seen after ECT and that ECT exerts its most profound effects on the prefrontal cortex.

If this hypothesis holds, then frontal functions must be affected as well as memory. Simply because there has been very little investigation of ECT’s effects on these functions, doctors should not be sanguine as to lack of permanent effects. Absence of evidence is not evidence of absence. In particular, Sackeim (2000) points to the lack of formal research on ECT’s effects on the executive functions of the prefrontal cortex: working memory (holding onto information in the service of a range of cognitive functions), logical reasoning and abstraction, shifting of mental set, problem-solving, planning and organising. These are ‘fundamental to organising one’s life and controlling behavior, yet there has been little investigation of the impact of ECT’ (Sackeim, 2000).

Three trials, two controlled and one small and uncontrolled, support the theory of frontal lobe involvement in functional impairment, although assessments were carried out only during or immediately after ECT (Neylan et al, 2001; Rami- Gonzalez et al, 2003; Schulze-Rauschenbach et al, 2005).

A generation ago, one researcher, reviewing the literature on ECT experimentation, wrote that the ease of its administration has resulted in its widespread use

‘without the usual background information customarily thought appropriate for most treatment modalities o this is undoubtedly the case because of the clinically observed changes in affect and behavior that result from such treatment. While such behavioral observations are certainly fruitful, such a model should be reversed to allow behavioral inferences to the possible effects on neocortical structures of such a procedure’ (Goldstein et al, 1977).

The evidence base

In the absence of long-term follow-up studies over the past two decades, the best available evidence for the permanent effects of ECT on memory ability and cognition has been generated by former patients. This has most often taken the form of patient-designed survey instruments, which ask specifically about cognition. Of the groups whose findings were incorporated into the SURE systematic review, one found that 65% of people who had had ECT reported impaired organisational skills (ECT Anonymous, 1999). Another found that one-third had difficulty concentrating, and 15% reported loss of reasoning ability (Pedler, 2001). A third asked people whether they had experienced a loss of intelligence ’soon after the treatment’, and about 40% answered affirmatively (they were not asked whether the loss persisted) (Philpot et al, 2004). However, former patients have publicly testified that ECT can result in a very significant (>30 point) permanent decrement in IQ score (Food and Drug Administration, 1982; Andre, 2001; Cott, 2005: p. 5) and have documented the claims by extensive neuropsychological evaluation.

Although surveys and case reports are not rigorous controlled trials, in the absence of such trials conducted months or years after ECT, they provide a basis for inferences as to the treatment’s permanent adverse effects and possible mechanisms of action.

What’s wrong with the way patients have been assessed?

Claims that ECT does not have permanent adverse effects on memory and cognitive ability have been based on extremely gross measures of mental function such as the Mini-Mental State Examination (MMSE; Folstein et al, 1975) and other dementia screening scales (Stoudemire et al, 1993; Sackeim, 2000; McCall et al, 2004). But if ECT had produced wholesale dementia on a scale gross enough to be detected by these tests, it would have been abandoned decades ago.

Researchers have used very simple, brief measures to assess patients - typically, highly structured tests of verbal learning involving familiar material. Examples include the Auditory Verbal Learning Test (AVLT; Rey, 1964) and various forms of paired associates, with very short retention intervals. But there is no evidence that ECT interferes with well- established skills such as vocabulary or with short recall periods (Squire & Chace, 1975; Zervas & Jandorf, 1993).

Even people with severe brain injury or lobotomy can perform well on simple tests of overlearned verbal material that require culturally common information, for example the Wechsler Memory Scale. Highly motivated and concerned ECT patients are even more likely to do well on these tests. However, clinicians who conclude from this that there is ‘no memory loss’ have not measured memory loss at all, and certainly not the type of memory and cognitive disability that people can experience after ECT (National Institute for Clinical Excellence, 2003).

Collectively, the comments of people who have had ECT indicate loss of complex skills that underlie real-world roles such as student, professor, nurse or physicist, and often inability to return to those roles post-ECT (Box 4).

The sensitivity of the tests used after ECT depends largely on whether and how well they reflect actual cognitive demands of the type placed on ex-patients. Researchers have assured patients that ECT has no permanent adverse effects on the basis of the assumption that these demands will be minimal (McCall et al, 2004). But this assumption has never been tested, and patient reports warn against it. The ECT patient population includes people who are in the prime of life, highly educated and involved in demanding professions, and who can be very articulate in describing their deficits. If simple standardised tests cannot detect these deficits, the challenge is not to dismiss their comments but to find or devise more appropriate tests.

The Autobiographical Memory Interview

Weiner et al (1986) and Sackeim and his colleagues (Coleman et al, 1996; Sackeim et al, 2000) have attempted to measure amnesia with an unvalidated instrument of their own design, known as the (Columbia University) Autobiographical Memory Interview. This test is insensitive to ECT-induced amnesia in two related ways: it measures very old information whereas ECT amnesia is known to be densest for more recent memory; and as many as 60% of the 200-300 test items involve overlearned and highly rehearsed facts - grandparents’ names, telephone numbers of close relatives, etc. - which are not likely to be erased by ECT. The overlearned and the old information may overlap (as in questions such as ‘What is your address’) or it may not, but in either case confounding the testing with these factors will unnecessarily result in an underestimate of the extent of retrograde amnesia.

Furthermore, the Autobiographical Memory Interview assumes that amnesia is limited to events that took place within the 12 months prior to ECT and does not attempt to assess amnesia that is not limited to that time period. However, only about 20% of the questions ask specifically about that year; the rest ask about overlearned personal information (What are your parents’ names? What are the rooms in your house?) or about events that have ‘ever’ happened to patients or their families.

Thus, it is remarkable that even as insensitive an instrument as this has shown extensive permanent retrograde amnesia measured at 2 months (Cole- man et al, 1996) and 6 months (Weiner et al, 1986) after ECT.

Assessment of amnesia

Routine neuropsychological tests are unhelpful in attempting to assess retrograde amnesia (Rose et al, 2003). Squire & Slater (1983) attempted to measure amnesia by asking people who had had ECT to make a time line showing the amount of life lost. The accu- racy of this depends, of course, on the patients’ ability to assess the extent of their amnesia, which can take many years, as they can only discover what they have forgotten when prompted by others to remember it. If asked soon after ECT, they are very likely to under- estimate the extent of retrograde amnesia.

Because the information stored in memory is unique to each individual, standardised questionnaires or checklists may prove insensitive to amnesia even when the patient can describe or demonstrate it. Janis (1950) interviewed patients before and 1 month after ECT. He suggested general topics but let the patients speak at length. After ECT, he attempted to elicit the same information, but could not. For each individual he could count 10-20 significant life experiences that had been erased that were not limited to the period immediately before the treatment. Even when he prompted patients to recount events they had described in great detail before treatment, they could neither recall nor recognise them. One year after ECT, the amnesias remained stable. The same interviews were given to controls matched in all ways: age, gender, education, duration of hospitalisation, type and duration of mental disorder; the controls, who had not had ECT, had no amnesia.

The Janis test (Janis, 1950) can be done easily and cost-effectively even by those with no special research training. SURE (2002) in particular calls for the replication of this study, as have others over the years. But it has not yet been done.

Assessment of memory and cognitive ability

Tests of memory and cognitive ability must assess a range of functions, because ECT impairment may vary not only between individuals (Goldstein et al, 1977) but within individuals when they undergo more than one course of treatment. Simple tests of rote verbal learning or the memory sub-tests of the Wechsler are not sufficient, since ECT (if the amnesia is not catastrophic) spares vocabulary, overall wealth of knowledge and overlearned verbal skills. Patients who have had ECT should be evaluated with the type of neuropsychological batteries that would be used for patients with a known or suspected history of brain injury. These should include tests of non- verbal and visuospatial memory and reasoning such as those listed in Box 5.

If there are constraints of time and finances, tests should be tailored to the individual’s deficits, which can be identified by narrative self-report and by rating scales such as the Cognitive Failures Questionnaire (Broadbent et al, 1982).
When should patients be tested?

If there is to be baseline testing, compensation must be made to account for the difference between the patient’s true memory and cognitive capacity and the performance when preoccupied by depression, medicated or hospitalised. If such compensation is not made, all a return to ‘baseline’ function after ECT would show would be that ECT’s effects are roughly equal to - although not necessarily the same as - those of depression (Calev et al, 1995).

A better estimation of pre-ECT capacity would be the patient’s history and normal functioning at school, work or in some other capacity. Many patients, at least in the USA, will have had an IQ test, which can be used for comparison with post- ECT scores.

Patients cannot be meaningfully evaluated in hospital during or soon after ECT. Neither self- reports nor crude memory tests may be reliable (Cronholm & Ottoson, 1963). A patient may do well on the MMSE or counting serial sevens but may not know that her friend visited her the day before - and will not know she doesn’t know. Having had no reason theretofore not to trust her memory, and not having been warned to expect severe dysfunction, she will adamantly insist that her memory cannot be faulty. It is not the psychological defence mechanism of denial, nor is it only the acute organic brain syndrome which occurs with ECT, that causes this genuine unawareness. Most patients have never before experienced a day in their life when they did not know what they ate for dinner or who they had seen or what they had read the day before. They do not even know that this is possible, let alone that it is happening to them.

The ECT Accreditation Service (2005) recommends that patients should be interviewed 3 and 6 months after ECT. But at 3 months, they may not have recovered the ability to hold on to day-to-day memories (they may still be within the period of anterograde amnesia, estimated by the US National Institutes of Health (1985) to average 2 months). We propose that follow-up should be no sooner than 6 months. One year allows for optimal stabilisation of permanent cognitive deficits and better assessment of retrograde amnesia.

The Service User Research Enterprise (2002) has called for a research study with ‘long followup because losses of memory prior to ECT may only become apparent after a long interval’, as have Greenhalgh et al (2005: p. 78).

What should patients be told?
Amnesia

The clinician who tells her patients that there is a lack of research on the permanent adverse effects of ECT will certainly be on solid ground; however, this is unlikely to help patients in making a potentially life-altering decision. The best she can do is present her patients with what is known (and not known) and encourage them to assess the risk in light of their personal situation.

Thus, patients can be told that permanent amnesia is one of the ‘common’ (Sackeim, 2000) or ’serious/ frequently occurring’ (Royal College of Psychiatrists, 2005: p. 207) effects of ECT and that it affects at least one-third of patients (Service User Research Institute, 2002; Rose et al, 2003). Such amnesia may be presented as having multiple dimensions: the amount of life lost, the temporal gradient, the nature of what is lost, and the effect of the memory erasure on the individual’s life.

The amount of life lost to amnesia cannot be predicted; patients should be warned that it has been known to extend to 10-20 years (Pedler, 2001; Service User Research Enterprise, 2002). It should be made clear that amnesia is not limited to information about discrete events or to facts that are easily regained, such as dates and telephone numbers, but that it encompasses all thoughts, feelings, personal interactions and relationships, learning and skills associated with the erased time period, and thus there is no simple or easy way to recapture what is lost. Since the temporal gradient of ECT amnesia is the opposite of normal forgetting, patients should be warned that the most recent months or years will be most affected. When amnesia is permanent it has profound, rarely positive, effects on all aspects of the patient’s subsequent life. For many people the effects of permanent amnesia and/or memory and cognitive disability negate any benefit sustained from ECT (National Institute for Clinical Excellence, 2003).

The College now advises psychiatrists to discuss the topic of retrograde amnesia carefully (Royal College of Psychiatrists, 2005: p. 7). But profound and sudden retrograde amnesia has no parallel in ordinary human experience. Doctors cannot be expected to understand the myriad ways in which permanent amnesia can disrupt one’s life. For this reason, prospective patients should be encouraged to speak with, or read accounts written by, people who have experienced amnesia. Such accounts are contained within the above-mentioned reports of SURE, NICE and MIND (Pedler, 2001), and are widely available in print (e.g. Donahue, 2000) and through online forums, e.g. http://www. ect.org) where prospective patients and families can sometimes ask questions directly of former patients.

Cognitive impairment

The Royal College of Psychiatrists (2005: p. 19) and NICE (2003) advise that the potential for cognitive impairment be highlighted during the consent process. Patients should be clearly told that ECT may have serious and permanent effects on both memory ability and non-memory cognition. These are best described in everyday terms: ‘the ability to plan and organise and get things done’ rather than ‘executive function’.

Intact memory and intelligence are highly prized in our culture. The more valuable a possession, the more important it is to know about even a small chance that it might be permanently lost. Even if the answer to how often IQ is permanently lowered is ‘We don’t know’, that is a material fact to be weighed by the patient. As individuals, patients vary greatly in the demands placed on their intellect and the potential consequences of permanent impairment. The decision to agree to ECT is theirs; the duty to inform, their physician’s.

Conclusions

Evaluation and re-evaluation of ECT’s risks and benefits by SURE, NICE and the Royal College of Psychiatrists, and the growing recognition of the extent and importance of research by and involving people who have experienced ECT, as well as increased interest in qualitative data, should lead to improvement in both patient care and research. In light of alarming findings that 50% of patients report receiving inadequate warnings of the potential side- effects of ECT, informed consent practices need to be revised. In particular, prospective patients should be warned of the significant risk of permanent amnesia and the possibility of permanent memory and cognitive disability. Research to adequately assess the nature and longevity of these effects should be undertaken, ‘incorporating patients’ perspectives on the impact of ECT into future RCTs’ (Greenhalgh et al, 2005: p. 78). By all accounts this is long overdue.

Declaration of interest
None.

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For a commentary on this article see pp. 237-238, this issue.

Harold Robertson (148 Beach 94th St, Suite 6, 3rd Fl., Queens, NY 11693, USA. Email: robertson.harold@gmail.com) is the director of a not-for-profit charitable foundation in New York focusing on the underserved patient population. His interest in psychiatric research, in particular research into the use of electroconvulsive therapy, has brought him into contact with others with similar interests across the globe for the past 20 years. Robin Pryor is a psychologist who has held a private practice in New York, NY, for 30 years. His particular interests are the history of psychiatry and first-person narratives of mental health service users. He writes and lectures on these topics.

Psychiatrist Davangere Devanand of Columbia University is dis-honored for his two faces: shock doctor and author of “The Memory Program,” a book on how to maintain and improve memory!

Devanand’s book “The Memory Program” is clean. Clean as a drug dealer who tossed his stash minutes before being cuffed by the police. Clean as a whistle. You can look everywhere. You can comb every page. You can check the index under “e”, under “s”, under “a” for amnesia. You won’t find a single mention of electroshock, ECT, electroconvulsive therapy, or shock treatment in this book about memory problems—causes and prevention. Nor will you find any mention of Dr. Devangere Devanand’s other day job, the one he held long before he decided he was a “memory expert” and “writer”: shock doctor at the country’s most infamous shock mill, the New York State Psychiatric Institute.

A book on common memory problems that avoids mentioning shock treatment is like, I don’t know, a book on weight loss that avoids mentioning calories. That is, it’s more than an omission. It’s a spectacular feat of deception. It’s a new low when you thought the gang up at PI couldn’t go any lower.

Course, “Dev”, who’s worked with the Sackeim team for over a decade, has (at least as far as anyone has uncovered so far) passed on the gravy train of shock machine company and magnet machine megabucks, so who can blame him for trying to get a little extra on the side any way he can? Especially with a low-budget book like this, easily thrown together, seemingly irresistible to the masses who wouldn’t dream of entering a psych ward?

And it’s not easy being Dev. Consider what it takes. In the morning go in a door marked “Memory Disorders Clinic”, where you’re the big cheese. You listen sympathetically to people who are distressed by mild to moderate, generalized and often extremely normal memory problems. You know, like the middle aged man who’s concerned when he can’t remember where he put his glasses, or takes longer than he thinks proper to recall a name. No matter how small the concern, you listen very seriously. You acknowledge the problem. You say you will help. You wouldn’t dream of saying to one of these clients, “Nothing is wrong with you; what you say is happening, cannot be; it’s just your subjective opinion, not reality.” You test. You prescribe. You try to heal.

In the afternoon you’re a “researcher” on one of Sackeim’s many federally-funded experimental ECT projects. You go in a door saying “ECT Clinic, Department of Biological Psychiatry”. Your work routinely permanently robs patients of years of their memory—two, five, ten, fifteen years. As well, your guinea pigs permanently lose those memory abilities the slight impairment of which so alarms those morning patients of yours, those free to leave the clinic at any time. You know this because your test results (the ones you don’t publish or even show to NIMH, your funding source) show it. You know it because your patients say it. But in the afternoon, you pretend these massive memory deficits, the ones like losing an arm compared to your other patients who break a fingernail, don’t exist. You tell these patients and their families that they’re crazy, they’re imagining things. You don’t even mention permanent memory losses when you write up your results for the fancy journals, the ones which made you such a big shot.

HELP for these patients? How about a book for us? Even ACKNOWLEDGMENT of their losses? Heaven forbid. Hey, you’re in a bind; ECT’s the cash cow of psychiatry, of PI. There simply can’t be any bad effects on memory.

A patient who enters door #1 with a fifteen year amnesia and the kind of memory and cognitive disability you see every day in the ECT clinic would be scanned with every kind of fancy machine you’ve got up there, would be given neuropsychological testing, and offered cognitive rehabilitation for life. A patient with the same symptoms inside Door #2 would be told “Nothing’s wrong with you, and if you think there is, you’re just crazy.”.

But there’s a sense in which your billing yourself as a “memory expert” (and getting a contract from a gullible publisher) is just part of the everyday duties of a shock doctor/apologist. (As the guy who was granted first authorship on that infamous article which claimed 1000 shocks don’t cause any memory loss, you’ve earned your stripes.)

You’ve got to be able to define and control memory loss: who has it, when it will be acknowledged, when it won’t. That is just part of being a shock doctor at the level to which you have aspired, and achieved: i.e. at the apologist level.

It’s a tough line, but you’re a professional, trained by the best. You have to acknowledge that memory is a human being’s highest and most precious treasure—-while at the same time defining some people as less-than-human beings whose memories you may pillage for profit. You’ve got to disallow the stories told by shock patients as “anecdotes”—while publishing your own stories as scientific fact.

We used to just have bank robbery, now we have Enron. We used to just have shock doctors pushing buttons, now we have them writing books about how to improve memory.

(David Healy, from his 2004 book Let Them Eat Prozac)

Once, just once, it would be nice to see doctors who use ECT make an argument for their product based on facts and science, without lies and omission, without making stereotypical errors of reasoning, and without lowering themselves to the level of libel by disparaging the sanity and veracity of their former patients.

If any shock doctor is capable of doing this, it ought to be David Healy (director of the ECT service at a Welsh clinic). But Healy’s chosen not to do so.

The first clue that that this book is nothing more than the industry party line on ECT comes on the very first page, but you might not pick up on it. Funding for the book, the authors admit, came from the Scion Natural Science Association. What they don’t tell you is that Scion is Max Fink’s private family foundation, one he started decades ago to fund research favorable to ECT from his personal money. Fink, age 84—often called the grandfather of shock—has been promoting ECT for half a century. He makes promotional videos for shock machine company Somatics, publishes books and articles denying any adverse effects of ECT, and has helped many younger men and women build careers as shock doctors. No one alive has a greater investment in shock. Public records show Fink’s foundation paid the authors $34,000 to write this book. Fink also co-wrote the book, according to sources like Wikipedia and the State University of New York website.

And then there’s this on page three:

“So clear are the benefits from ECT for patients who might otherwise commit suicide, or otherwise languish for years in the blackness of depression, that there should be little controversy over whether it is safe or effective.”

The 382-page book can be pretty well reduced to the above statement. Whether you accept its very loaded assumptions (ECT has great benefits, ECT prevents suicide, ECT cures depression) and agree with it or not, there is nothing in the remaining 379 pages that will change your mind. Even if you don’t know much about shock therapy before picking up the book, you might well stop right there and ask yourself how the second part of that sentence follows logically from the first: can any treatment be so effective we needn’t ask whether it’s safe, and can disregard evidence that it’s not? If you read the rest of the book, you’ll realize that this is indeed the authors’ position. That should be on page three is the alarm bell warning you that this book is full of value judgments by supposed authorities substituting for evidence and reasoned arguments. It is history rewritten as the authors, all unabashed proponents of ECT, think it should be.

To an informed reader, that any supposed history of ECT can leave out so much of what is known about it is somewhat puzzling. It makes a kind of sense only when the book is understood as a long love letter to its invisible third author. Here Fink’s opinions on the treatment he has zealously spearheaded for his entire career have finally been set down in one place for prosperity. It was decided to take his name off the book, most likely for public relations purposes; Fink’s partisanship of ECT is so extreme and so well-known that many would dismiss a book by him as self-serving propaganda. Shock Therapy is no less that for the thinly veiled attempt to erase his fingerprints, such as not revealing that the Scion Foundation is Fink’s own private family foundation.

It’s not a surprise that Shorter, the author of a history of psychiatry which dismisses all nonbiological approaches to mental illness, supports Fink’s position. But those who know Healy’s work are likely to be astonished that he has been willing to put his name to an adulatory book on electroshock. Healy is internationally known for his criticism of the influence of psychopharmaceutical companies on medicine, in particular their skewing of research and their marketing tactics. He has also, through all this, accepted money from more than a dozen such companies.

He’s become widely esteemed in some circles, especially ex-patient circles, as a whistleblower, upholding high standards of scientific evidence and honesty in research. That reputation is the capital he has now invested in this new book, and it’s all been squandered away in a work of audacious, breathtaking dishonesty. That Healy has perhaps engaged in as much self-deception as other-deception in order to write this hardly matters. In either case he has willfully disabled his intelligence and critical thinking skills, his scientific knowledge and scruples, and even reason and logic.

The book takes the position that adverse permanent effects of the treatment don’t occur. Ever. “The charge of brain damage is an urban myth,” the authors say, and dismiss permanent memory loss at every turn as entirely fanciful, not real. It’s a position that is too extreme for even many of ECT’s most rabid proponents, but it is the position maintained by Fink, and so it must be upheld no matter what the cost.

The authors are 10,000% behind shock, and that goes for the types of ECT that even zealous proponents can’t quite stomach. Unmodified ECT (without anesthesia), ECT outside of hospitals, outpatient ECT in doctors’ offices without anesthesia, regressive ECT of the sort that reduced patients to incontinent and spoon-fed infants, multiple ECT, involuntary ECT, sine wave ECT—the book hasn’t an unkind word to say about any of them. The treatment works, the book says smugly, as if that were all that mattered (and with little evidence in support besides the repeated assertions of psychiatrists).

For example, the authors say of regressive ECT, “The circumstances of the entire thing were ghastly, yet the treatment seemed to work…beating chemotherapy soundly in terms of the ultimate result of getting off therapy entirely.” The use of involuntary ECT without anesthesia to punish inmates at a large state hospital in Milledgeville, Georgia has become the stuff of legend, and the nickname the staff and patients had for shock, the “Georgia power cocktail,” a kind of shorthand for the worst that can be done to mental patients. To my knowledge, before Shock Therapy no contemporary psychiatrist has ever defended the use of the Georgia power cocktail. Yet these authors approvingly quote a Milledgeville psychiatrist who said, “I have seen some remarkable recoveries here.” They conclude the two-page section addressing past abuse of ECT by saying that even under the worst circumstances it led to “remarkably effective results in terms of successful discharges.”

While any history of ECT is obliged to acknowledge allegations of abuse, this is the first to brush them off: ECT “does not lend itself well to abuse because it is painless: the patient is immediately unconscious.” International human rights advocates, who consider ECT without anesthesia torture, would disagree. Those who know Healy by reputation as a critic of psychiatry, and those in the mental patients’ movement who considered him an ally, will simply be astonished, and then feel betrayed, to see his name on such a work.

His name is in fact essential to the book’s claim to be a credible history. Healy is a historian of psychiatry and the author of well respected books like The AntiDepressant Era. However, having Healy’s name on this book does not make it a history; not in the sense of his other works, not in any sense at all. True historians don’t leave out a huge swath of what they know because it doesn’t fit into an agenda determined in advance. In other words, they write history, even if always from their own perspective and with a particular focus, but they do not rewrite it.

A work of scholarship does not make categorical statements like “There is no known occurrence of brain damage associated with ECT” that are not backed up with any references, only the presumed credibility of the authors and the publisher, and which the authors and publisher know are easily proven to be false. Any serious scholar looking into the history of ECT would acknowledge evidence of brain damage from the get-go—for instance, in the earliest studies done by the inventors of the treatment—and on up to the present day.

Permanent amnesia has also been documented since the 1940s. Even one instance of the presumed impossible occurrence—even one former ECT patient interviewed by Healy who lives on Social Security disability due to brain damage caused by ECT and documented by her physicians, even one scientific study—makes such statements untrue. Rather than engaging and weighing the evidence for permanent brain damage and permanent memory loss, even if only to tell us they find it unconvincing, the authors have chosen to simply omit it. When they can’t get away with that, they resort to lies. Healy felt constrained to mention the case of Marilyn Rice, a prominent former ECT patient. Rather than revealing that her brain scan, which she made public, documented permanent structural damage, he says only that she “believed” she experienced permanent memory loss. He then goes on to try to discredit her by telling readers she was an “anti-ECT,” “anti-psychiatry” activist. While the authors and publisher well know these statements about Rice to be false, readers will accept them at face value because of the trust they place in the authors and the Press. But if Rice were alive, she could sue the authors and the publisher for libel. Leonard Frank, a former ECT patient very much alive, is libeled as well. Healy interviewed him, plus much of Frank’s story is public record, so he well knew that Frank never engaged in the illegal act (smoking marijuana) he’s accused of in the book. Healy made this claim up, smug in the knowledge that even living former psychiatric patients don’t have the means to pursue libel lawsuits against doctors. But it is shameful (and far beneath anyone who calls himself a scholar) that he used his immunity this way.

This kind of intentional deception is very different from framing history. Certainly, the history of any topic can be written from different perspectives; medical, political, social, legal, moral, economic. No one book can include all of these. In fact, Rutgers has in the pipeline another history of electroshock; a social history, in large part the story of those who have experienced and survived it. Those voices have never been heard together in print and that book, due out in January 2009, truly will break new ground. It is possible to leave out some aspects of history in order to focus on others, without being dishonest. But this is not what Healy et al have done. They don’t leave out the question of ECT’s adverse effects. They take it as one of their central topics, only to pretend that most of the evidence of the past seventy years does not exist. They then must try to knit together a case for their position that there are no permanent adverse effects out of—in the case of brain damage— a few very old studies culled from dozens, and—-in the case of memory loss and cognitive disability—thin air. (There are no studies supporting unfootnoted claims like “In the vast majority of patients, memory is restored within weeks after the last treatment,” nor have there ever been any studies undertaken on Healy’s uniquely bizarre claims like the one that anesthesia itself, or maybe even valium, causes the extent of permanent amnesia seen with ECT. Who else would dare to claim that people put under anesthesia for routine surgeries experience years of memory erasure? Where is even one such documented case?)

Simply put, Healy and the other authors know so much about electroshock that it is impossible for them to maintain their position that it is harmless without deceiving their readers. On every page, they seem to be looking over their shoulders to see if anyone will catch them. In several cases, the hubris of these authors is such that they actually cite parts of studies or reports that resoundingly disprove their claims when read in full, but they must have been confident that no one would do so.

Here are some examples.

The authors maintain that “Critics claim ECT produces significant and severe memory loss and brain damage, yet in fact such side effects are either completely unfounded or are short-lived and less profound than stated.” It’s right on page two, but no reference follows the statement.

Yet they are aware that all the available data to date on memory loss was systematically reviewed in a study commissioned by the British government and published in the British Medical Journal in 2003, because they cite to that study elsewhere for some other point, without revealing the main purpose or findings of the study: that at least one-third of ECT patients suffer permanent amnesia and that ECT commonly erases five or more years of their lives.

They cite a 1985 National Institute of Mental Health Report on ECT for its recommendation that questions about shock be included on psychiatry licensing exams. But what they don’t say is that in this same report NIMH found, based on work done by memory expert Larry Squire, that ECT causes an average eight-month period of permanent amnesia. Squire showed that the majority of ECT patients had impaired memories when they were studied three years after treatment—meaning Healy et al have neatly inverted the scientific evidence.

In a discussion of a 1977 American Psychiatric Association survey of psychiatrists, they mention some of the results (about how many do shock, and so on) but leave out the one finding that doesn’t fit their script: the fact that 41% of the surveyed psychiatrists said that ECT causes brain damage.

The book repeatedly flatly denies any “neurologic sequelae” of ECT. In order to do so, the authors simply ignore decades of evidence for such sequelae, from the earliest animal and human autopsy studies (of which dozens show damage) up to the present-day controversy over mossy-fiber sprouting (an abnormal finding seen in epileptics and ECT patients). When the authors try to make their case by citing, rather than omitting, evidence, they have a rough time. They cannot cite one single brain scan study designed to investigate whether ECT causes brain damage by comparing ECT patients to controls who have not been shocked, for there has never been such a study (a fact about the history of ECT that itself speaks volumes).

The authors cite to the famous Irving Janis study of 1951, which used extensive before-and-after testing to document that all patients studied had permanent extensive amnesia after routine ECT (and followed them up long enough to be sure). The Janis study is beyond reproach methodologically and there have been many calls for its replication. But Healy et al do not mention what this study was, or what it found—instead they cite it only to claim it says something it does not!

Here’s the book’s case that ECT does not cause brain damage:

—A 1940 Italian dog autopsy study by the inventors of ECT. The authors found grave pathology in the brains of shocked dogs and assumed the pathology was reversible but only in one case did that seem to have happened. They could claim only “the possibility of a relatively good recovery” from brain damage, not that there was no brain damage;

—The speculation that the inventor of a rival therapy started the myth of ECT brain damage in 1942 to promote his own treatment;

— The statement that in 1950 a major shock proponent believed that there had been a number of studies showing ECT did not cause brain damage;

—-A 1942 EEG study which Shock Therapy claims showed that abnormal EEGs eventually return to normal but which actually showed that even after six months a third of ECT patients still had abnormal EEGs;

—A 1942 monkey autopsy study in which the authors found “physiological evidence of dysfunction…as clear and definite as it is in the human patient”;

—A 1944 study of four cats;

—A 1991 uncontrolled MRI study in which the lead author was a longtime consultant to the companies that make the devices, which found that patients’ brains were more abnormal post-ECT (dismissed as “cerebrovascular disease” with the caveat that this was only speculation);

—And finally, a quote from a psychiatrist who said in 1945 that “there cannot be any serious impairment to the brain.”

There. Now are you convinced that brain damage is only an “urban myth?”

The book mentions, in passing, two other contemporary ECT patients besides Rice who have publicly revealed the results of their own neurological testing documenting permanent brain damage (without, in fact, mentioning this fact about them). Healy in particular well knows that ECT disability has ruined the lives of former patients, because he admits interviewing people who’ve painted him pictures in great detail of what ECT memory disability is like and how it differs in extent and kind from any normal memory fallibility. They are credited in the acknowledgments.

Healy is certainly the only one of the three authors who would have deigned to sit down with ECT survivors; Fink, judging by colorful comments he’s made over the years, would as soon carry out an interview with monkeys. It is the pretense of listening, only to dismiss and discard everything he heard and even to print the opposite of what he heard or to libel those who trusted him, that makes Healy morally culpable in a way the other two, despite all their lies, are not.

It was left to Healy to carry out the thankless task of crafting the section of the book that is intended to support its denial of decades of evidence of permanent memory loss. By his own account he seems to have agonized over it for years. To say that it is poorly written is beside the point; it is the thinking behind it that is so bad. Healy had to twist common sense and logic into pretzels, and the section titled “But Why Memory?” is a sad spectacle. Knowing that Healy has in the recent past been capable of critical thinking and scientific reasoning in the case of psychiatric drugs, reading this section is like watching a train wreck. Instead of citing, proposing, or even conducting a single scientific study on the topic of whether ECT causes permanent memory loss—the way he has famously approached the question of whether psychiatric drugs can cause suicides—Healy engages in bizarre and nonsensical rationalizations of what he has already decided to believe: shock cannot cause memory loss. Rather, he says, amnesia after ECT is a kind of mass delusion, and comes about for the following reasons:

—Our culture places too much value on memory.

Healy has made the strange, and easily disproven, claim that ECT amnesia has only become an important issue within the last forty years, and that there was no concern about it for the first thirty. What he says, or tries to say, about why humanity has placed value on intact memory only since the 1960s is too sketchy and incomprehensible to reproduce here. Suffice it to say that no editor ought to have allowed it into print.

—Benzodiazepines such as valium cause sudden permanent extensive amnesia of the type which is seen after, and mistakenly attributed to, ECT. (Not one study is cited to prove this point, probably because no one before Healy has ever postulated such a theory, let alone designed a study to investigate it.)

—General anesthesia in and of itself routinely causes permanent extensive amnesia which is mistakenly attributed to ECT. (No citation, for the same reason.)

—People who undergo coronary artery bypass surgery experience cognitive impairment. (This is supposed to prove that ECT patients don’t, apparently…at least that seems to be the only reason it’s included in this book.)

—ECT patients are “psychoneurotics” who “cling to claims of abolished memories.”

—ECT patients are responding to clinicians’ suggestions that they have memory loss.

—Even psychiatrists forget things that happened 20 to 40 years ago.

—A man in Germany once forgot about an affair he had with a woman.

—”Psychologists may have used memory loss as a wedge in battering down the citadel of medical authority.”

If these authors were being honest with their readers, they might say that all the chicanery they have engaged in is necessary and justified because electroshock is a procedure worth defending at any cost. They might even say the ends justify the means, as do the many psychiatrists who force shock upon unwilling patients for their own good. The authors repeat over and over that electroshock “works.” (What’s meant by that, for whom, for what, for how long…all questions they don’t ask.) This is assumed to overrule everything: risks of permanent damage, patients’ rights to be informed and to refuse. But that electroshock works, like their other claims, is asserted, not proven. Max Fink is quoted as saying that ECT is the most effective treatment of the 20th century. Data is scarce, mostly consisting of three studies from the 1940s. Their main argument is a 1988 Danish study comparing ECT to the now rarely-used tricyclics, which they claim shows that shock reduces Hamilton scores by ten more points than the drugs. Even one of the adulatory reviews of the book—written, it turns out, by a psychiatrist who’s a colleague of Fink’s and was interviewed for the book—muses that there have been only two randomized controlled trials that even looked at the question of whether ECT is effective compared to drugs. No wonder the authors have to keep repeating over and over “It works.” They haven’t got any evidence.

Two large, 21st century studies comparing contemporary ECT to the type of drugs used today for depression and mania found the procedure to have only about a 30-50% efficacy rate in the short term. In the long term, at six months, patients who’d had ECT did only marginally better than those who hadn’t. Though the author of these studies was interviewed extensively for this book, the studies aren’t mentioned.

And although the claim that ECT is “lifesaving” made it onto the dust jacket copy and is a central selling point for both the procedure and the book, once again the reader is being sold a public relations line, not science. The authors appear to have culled through all the evidence that ECT either has no effect on, or is associated with higher rates of, suicide and mortality to select out two studies from the 1940s (again, why the 1940s?) as their best and only evidence that the procedure has ever saved lives. One was a comparison of ECT and metrazol (the original convulsive shock treatment induced by chemicals) and the other a study of outcome in manic-depressives which only incidentally considered suicide.

In an era of information proliferation, how can the authors get away with this? After all, you can’t get to page three of this book without coming upon a categorical assertion with no reference. It’s not so much that no one will know; it’s that the ECT industry, which has always thrived on deceiving patients, stands solidly behind the book and, holding prominent posts in medicine and academia, they can and will make sure no criticism gets through. The glowing blurbs on the back cover are from prominent shock doctors. The book has gotten loving reviews in the media and the medical journals. Meanwhile, professionals from outside the industry and, most importantly, the survivors of ECT who have been left out of this history, are not able to be heard. In fact, a critical review on amazon.com which infuriated Healy was taken down, presumably by him, soon after it appeared. This, more than anything else, explains why an author and publisher can knowingly and without fear of negative repercussion, one might even say arrogantly, put out a book filled with errors and lies of omission. That is true, at least, when the subject is electroshock, where there is such an imbalance of power between those who champion it and those who have been subjected to it or otherwise know better..

ECT practitioners will be able to cite this book in support of what they already believe, without any need to read it. Who might be interested in actually reading the book? Well, if you like biographical minutiae about the men who championed convulsive treatment—gossip about the mental health of Manfred Sakel or the financial motivations of Lothar Kalinowsky, for instance—you’ll find it here and nowhere else.

As well, you’ll find a story of the invention of shock treatment that is different from the universally accepted version. It may or may not be true; there’s no way to check it out because it’s based on private papers the authors claim to have seen. Whether it reveals anything about the invention of shock or simply about the authors of this book, it’s more revealing than Fink, Shorter, and Healy probably realize.

According to them, the first shock treatment was not the success it has been said to be in all previous histories. In fact, it wasn’t until the third shock treatment that the inventors got an outcome they wanted to reveal publicly. The first was a failure. The second is said to have been given to a different patient, a woman, and nothing more is said, not even whether she lived or died. After the third treatment was judged a success, its inventor, Ugo Cerletti, conflated the first three attempts into one, and that false account has survived until now.

“The creators of electroshock had been so eager to give the public a perfect story,” the authors conclude, “that they concealed a few weaknesses in their claims present in the record.” The same can be said for these authors. Yet today the record is so extensive that Shock Therapy not only fails as history, but will fail to deceive anyone but the procedure’s most devoted enthusiasts.

THERE’S ONLY two things you don’t talk about in polite company - one is politics, the other is religion.” Michelle Shocked delivers her favourite line with a shrug that signals her intention to talk about faith, politics and little else. No-one has ever called her polite, but that’s how she likes it.

Shocked defined herself through confrontation the moment she ran away from her strict Mormon upbringing in East Texas to become a folk singer. Her rebellious streak landed her in mental hospitals, jail cells and homeless shelters in San Francisco. The cover of her debut album, Short Sharp Shocked, showed her being manhandled by riot police, a choke hold stifling her shout of protest. From the name down, she was outraged, appalled, and ready to fight.

She struggled against misappropriation of her music, taking her label to court and winning on the grounds that her contract amounted to slavery. She passionately condemned US foreign policy, speaking out against the invasion of Iraq back when it meant career suicide. She confounded the expectations of the music industry and her fans by refusing to stick with any one style, singing folk, blues, rock, gospel, swing, latino and Disney songs as the mood took her. She has no regrets.

Interviewing her is bracing, but never bland. “I find the question to be a particularly British type of journalistic tedium,” she tells me at one point, adding that she would like to put her hands around my throat and strangle me. “I really want to get to the soul of this, but you already have your questions. If you just want Q&A then I’ll give you answers, but don’t waste any more of my time. I’m trying to get to some heart matters here, man.”

Shocked is passing through New York on a tour to promote To Heaven U Ride, a live Sunday morning gospel set that she released on her own label, Mighty Sound, earlier this year. After a trip to a hat shop to get her trademark silk fedora professionally cleaned, we take tea at Starbucks. Shocked thinks that “people are hypocritical” in their attitudes to the corporate coffee chain, and in any case, she really likes the chai there. Knowing what your cuppa will taste like is important when you’re living out of a suitcase for weeks on end.

She pays with a gold American Express card, but times are evidently tight. She is staying at a grim hostel in Chelsea and travels from gig to gig in a small car barely big enough for her guitars and her three backing singers. “We wanted to go home with some money,” she says, “so the tour budget kept shrinking until we were sharing a room.”

Not that she is complaining. Shocked lived in enough squats and slept in enough doorways when she was young to know better than to get too comfortable with stardom when it arrived in the late-1980s. “I have never, ever, written songs to make money,” she says. “It’s something that I love to do. The fact that it becomes a recording is secondary.

“I’ve weeded out all the tourists by now. By now I probably have fans that I could put out a neo-Nazi album and they’d say, I sure didn’t see that one coming’. When you stop being cool, that’s when you can start calling people fans.”

Her gospel album comes with a “womanifesto” that begins: “Ask me about my religion. Of course no-one ever does.” But whether she is asked or not, the conversation returns again and again to her faith. Her political ideals, her feminism, her family relationships - all are expressed in the language of destiny and belief.

Fifteen years ago, Shocked was saved, at the charismatic Church Of God In Christ, close to her home in South Central Los Angeles. She went along for the singing, thinking that “this music would be so good if they’d just give that Jesus crap a rest”, but then, to continue the well-worn story, “stayed one Sunday too often”.

“When I made the altar call I was crying,” she says. “It’s almost like crawling across broken glass. The preacher said, This is the happiest day of your life’, but it took me a long time to understand.”

She soon joined the choir, as the only white woman in an African-American chorus, an occasional soloist with her own unofficial title: Sister Shocked. “My sister said, Chelle, you look like a grain of rice in a bag of chocolate chips’.”

Shocked was born Karen Michelle Johnson, in Dallas in 1962. After her parents divorced, when she was three years old, she was raised as the eldest of eight children by her mother and step-father, an “army brat” moving from base to base in the US and Germany. In her teens, the family returned to Kelsey - a one-church, one-store, one-cemetery town founded by Mormons in East Texas, in the middle of beautiful Bush-backing nowhere.