Funday: ECT study shocks. Ha ha.
As everyone who reads this blog knows, I had ECT in 1996. It helped me for about a month. I was back in the hospital exactly one year later, as depressed as ever. And then one year after that. Not only was the ECT ineffective, it was incredibly damaging to my cognitive functioning and memory. But sometimes it's hard to be sure of yourself when everyone "credible"—scientists, ECT docs, researchers—are telling you that your reality isn't real. How many times have I been told my memory loss wasn't due to ECT but to depression? How many times have I been told that, like a lot of other consumers, I must be perceiving this incorrectly? How many times have people told me that my feelings of trauma related to the ECT are misplaced and unusual? It's as if I was raped and people kept telling me not to be upset—that it wasn't that bad. (Oh, wait. That happened too. Separate issue.)
Well, now I'm sitting at my desk and crying—not phlegmy sobs or anything; just prickly tears. I feel like finally, after all these years, my experience is being validated—by the same person, Harold Sackeim, who invalidated it most publicly. (And hey, Miltón, if you're reading this, gimme a call and apologize. That would make this a banner week.)
Through the years Linda Andre, director of the Committee for Truth in Psychiatry, has been an ECT survivor-activist who's galvanized this movement and made me feel whole. She says everything I would say better than I could, so let's just give her the floor. (Side note: But I don't think Sackeim would characterize these results as "permanent." He'd say "long-term.")
ECT Causes Permanent Amnesia and Cognitive Deficits, Prominent Researcher Admits
NEW YORK CITY (12/21/06) -- 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 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. The article is available here.
Comments
I notice the article says that Mr. Sackeim broke both federal and state laws by not revealing his connection to ECT device manufacturer Mecta Corporation, which represents a serious conflict of interest with his job as a researcher. When poor people are found to have broken laws, they are usually sent to jail. I wonder if this means that Mr. Sackeim will be going to jail as well?
Posted by: Kent | December 22, 2006 03:49 PM
This reminds me of the experience of the narrator in "Zen and the Art of Motorcycle Maintenance." He experienced severe disassociation of memory and personality wipe. I've heard the official story for a while that modern ECT, in appropriate levels, does not actually cause damage. This is a big story if true.
Mack
Posted by: Mack | December 23, 2006 03:27 AM
LOL, you are so right, Liz! Psychiatrists and psychologists never use the word "permanent", on the theory, I guess, that you can't tell that whether effects are permanent until the person is dead. So when you and I die, the obituaries must read: She suffered permanent amnesia.
Check out the best web site for all kinds of info on shock, www.ect.org
and you will want to link to it.
Also for fun, my blog, which thankfully has nothing to do with "mental health": www.surfinggrandmas.blogspot.com
Posted by: Linda Andre | December 23, 2006 10:42 AM
Dear Liz,
I am absolutely impressed by what you have told us here.
I hope you spend great days off-Internet and receive a 2007 full of beautiful gifts (as the ones you give through your writing).
All my best,
Raquel from Buenos Aires
Posted by: Raquel Barbieri | December 23, 2006 11:29 AM
Dear Liz,
You and your readers will have to forgive me for a cut and pasting of the below listed commentary which I posted to our website and I just wasn’t in a mood to retype in its entirety. It has a little different spin on the article…and here’s wishing you and all a Happy Chanukah, a Merry Christmas, Happy Kwanza, and Healthy, Happy, Prosperous and Peaceful New Year.
Warmly,
Herb
VNSdepression.com
To the readership,
(Commentary)
Today I know of at least two individuals in this world who I believe are gloating about a recent press release, “high-fiveing” each other and applauding themselves with “I told you so.”
I happen to not be one of those individuals as I was cognizant of and well aware of the side-effects from ECT some four decades ago, almost as long as those two individuals are old. But then again when we are desperate and our options were severely limited and life and death issues were at stake and decisions had to be made we educated ourselves as best we could, we consulted with trusted physicians and crossed our fingers and hoped for the best. While Joyce’s life has not gone unscathed, today she is alive; she is happy and has a reasonable quality of life as well as being depression free almost continuously for the past 6 years with little or no medications as we attribute her wellness to VNS Therapy although also having had ECT treatments throughout the past 40 years.
What I’ve also done in my lifetime is to continue to remain positive, supportive to Joyce, to continue my education relating to VNS and research for new treatments options and to always advocate for education and to encourage hope and persistence to others as well, to go on and not give up.
Unlike the two individuals I cited above who have from a negative standpoint hammered away at ECT and doctors who participate in this therapy and despite any recent proclamations to the contrary they have in one form or another also sort the banishment of this therapy option. The two individuals now gloating, in my opinion, are Ms. Linda Andre - Committee for Truth in Psychiatry and Mr. Juli Lawrence of ECT.org.
If anything should come of this news article and their negative activism is the fact that new and innovative therapies are desperately needed for this large and unique population of seriously ill disenfranchised patients who are often unable to advocate for themselves and who are even willing to think of undergoing ECT or volunteering as study subjects (guinea pigs) for research studies such as DBS (Deep Brain Stimulation) or the like. It also exemplifies once again the seriousness of severe and treatment resistant depression and the extent to which individuals will go in order to relieve their pain, suffering and anguish and the reasons to be educated about treatment options and VNS Therapy as an alternative and/or adjunctive potentially efficacious therapy option, in my opinion. I know there are others achieving wellness from the VNS Therapy that can now also attest to this fact.
Just yesterday at Joyce’s psychiatrist’s office he introduced us to a young woman who is a recent VNS patient and is beginning to obtain efficacy. Of the many points we discussed and apropos to this commentary was the fact she turned down ECT and selected VNS. She commented “I didn’t want to fry my brain.”
Electroconvulsive Therapy Causes Permanent Amnesia and Cognitive Deficits, Prominent Researcher Admits
http://www.vnsdepression.com/pp10-010025-articles_12-21-06-Electroconvulsive-Therapy-Causes-Permanent-Amnesia-and-Cognitive-Deficits-Prominent-Researcher-Admits.htm
Comments, opinions and/or opposing views are welcome.
Warmly,
Herb
_________________
"What we have done for
ourselves alone dies with us;
what we have done for
others and the world remains
and is immortal" - Albert Pike
http://vnsdepression.com/forum/viewtopic.php?t=161
.
Posted by: Herb Stein | December 23, 2006 12:32 PM
Dear Liz,
I nearly fell off my chair this morning in absolute amazement. You’re remarkable, you’re great! I truly admire your spunk, your Spikol, your thoughts, your chutzpah and your writing abilities. I also admire you’re belief in one of the most basic American freedoms, Freedom of Speech.
I honestly and truly wouldn’t have believed that you’d post my previous commentary especially after your statement:
“Well, now I'm sitting at my desk and crying—not phlegmy sobs or anything; just prickly tears. I feel like finally, after all these years, my experience is being validated—by the same person, Harold Sackeim, who invalidated it most publicly. (And hey, Miltón, if you're reading this, gimme a call and apologize. That would make this a banner week.)” – Liz Spikol
Ms. Lawrence is extremely proud to have attacked me personally with all kinds of adjectives and false accusations and to have stated I’m the only one she’s ever banned from her website. I didn’t agree with many of her opinions and statements regarding ECT and the fact she also made statements advocating for the banning of ECT. She took my opposition and twisted my opinions to be personal attacks on her and her entourage as the basis for my being persona non grata. Add to the fact she allowed others to personally attack me contrary to her so called principles and manipulated, edited and/or deleted information to suit her purposes.
As your statement indicates I’m sure you and others as well as my spouse have gone through a personal hell as a result of the side-effects from ECT. I’ve never denied or pooh, poohed anyone’s experiences. I’ve lived with and supported my spouse and the aftermath of some 43 years of ECT, medications etc and all kinds of side-effects as well. I’ve only tried to emphasize the point as I do in my writings, if one is desperate and one’s back is against the wall, one will hopefully consider anything before the final option. There are many individuals who will attest to the fact that ECT did save their lives when nothing else worked. I can state honestly, when nothing else worked for my spouse, at the time, ECT even with our knowledge of its side-effects was a lifesaver for her too.
Don’t ask…but Ms. Lawrence and her entourage came down upon me like a ton a bricks hurling all kinds of personal attacks at me for my opposing thoughts and opposition to her opinions and advocacy. If Ms. Andre and Ms. Lawrence and all the folks that have had serious side-effects from ECT as well as various medications and/or therapy options were successful calling for the banishment of each one of these therapies just imagine where many of those who have benefited would be today.
So while I long ago acknowledged and empathize with your experiences and that of Ms. Andre and Ms. Lawrence I do not go about advocating the banning of therapy options knowing full well that others have benefited. My spouse’s near fatal experiences with Lamictal is not a cause to celebrate by my alarming others or to call for banishing the drug. What I do is to make an effort to educate in a calm non-provocative or alarmist fashion and to share our personal experiences and knowledge so that others may be aware of our experiences with the understanding the same is not true for everyone and to help the patient make an informed and un-coerced medical decision hopefully in collaboration with one’s trusted, compassionate, knowledgeable and licensed health care practitioner(s).
Unlike their years bashing of ECT and the doctors administering this therapy we have been extremely fortunate in that those physician’s attending to my spouse have been extremely attentive and caring of her and none appeared to be money hungry. The use of ECT was not suggested so that they could make tons of money. In fact, most all of her psychiatrists did not perform the actual ECT but recommended other physicians for the procedure.
Many of the websites I have viewed through the years rightfully give individuals an opportunity to share many of their sad experiences but they become what I refer to as “bitch and moan” forums. The participants of these forums become imbedded for years and years and become cliques not accepting and intolerant of new comers with differing views and most importantly they lose sight and focus upon discussing proactive and positive means of trying to obtain wellness.
Maybe it’s because I come to those forums as a caring support person and mental health advocate and activist and not as a patient that my views are unaccepted or attacked? Maybe it’s because I prefer to not limit my perspective on options to obtain wellness?
Whatever, I just want to thank you for having a much wider view than most, even with your own personal challenges but with a good sense of humor.
Warmly,
Herb
VNSdepression.com
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Posted by: Herb Stein | December 24, 2006 10:24 AM
Herb, really! You are way out of line. No one is advocating banning anything; don't you do research before you publicly post what you think Juli and I believe or do or stand for?
Get a grip on reality before you post again. Try addressing issues instead of straw (wo)men.
Posted by: Linda Andre | December 26, 2006 01:07 AM
Do tell. About time for confirmation and validation. However, given the choice between ECT and suicide, clarity can be evanescent. When I raised the connection between loss of cognitive ability and memory loss with ECT, the psychs who repudiated and/or scoffed at reality this were destructive. REcovery from depression may be possible; recovery from ECT may not be.
Posted by: TD | December 26, 2006 08:03 AM
Dear Linda,
Really, oh really!
Ask your buddy Juli amongst her postings and many tirades about her statements. Better yet, ask her to tell you how she also rallied her troops to ban the use of ECT in Utah a few years back.
“You are way out of line. No one is advocating banning anything; don't you do research before you publicly post what you think Juli and I believe or do or stand for?” – Linda Andre
Put all your writings together and one has to be ignorant of what you are suggesting or should I say alluding to.
You advertise the recent successful lawsuit of an ECT patient at every opportunity yet you don’t present the whole story. You distort your presentation. The lawsuit was one of negligence. Having spoken to the plaintiff the individual is not against ECT in spite of the side-effects, the plaintiff acknowledges the beneficial aspects of the treatment in the past. It worked for the individual in the past and abated the individual’s suicidal ideations. There was a new attending physician administrating the improper use of the therapy and I am all for the plaintiff winning the appeal and the award but not your distorted use of the story.
You bet I do my research and even learned how to “screen capture” web pages so that folks like you and in particular your friend Juli and all her distortions, editing, deletions, attacks and diatribes can be caught on record. Seven or eight years ago I wasn’t as computer knowledgeable so I didn’t capture her remarks from her website. Here’s some reading for you.
http://vnsdepression.com/forum/viewtopic.php?t=74
Read the screen captures carefully and then go back to her site and notice the missing postings. First they appear and then they disappear. I guess it’s a modus operand on her part to enable her to validate her points or position as well as rallying her troops for support and to sustain the personal attacks. Call it Communistic reporting or biased sensationalism or her sense of fairness (joking) or whatever makes you feel good, the fact is she’s biased, doesn’t believe in Freedom of Speech and in my opinion, I believe the same holds true for you as a result of your detrimental experiences that cloud your reasoning. So while she proclaims whatever she currently proclaims about her position on ECT she did call for the banning of ECT in the past and that is fact and the reason I posted to her website my remarks to her recent change in position.
I would suggest Juli and you plaster your press release across the front pages of your respective websites as both you and she apparently have achieved in your minds a great moral victory in vilifying the therapy and its researchers. You’re vindicated in my eyes except you never had to be vindicated in the first place as I believed your experiences and all the experiences of those patients sharing their side-effects but you’ve never discussed more importantly what one was to do in order to achieve wellness or if one was on the verge of committing suicide what alternatives were available. And while I acknowledge that there are patients who experienced serious side-effects from this treatment option I also am aware that many more have benefited from the therapy who does not participate in one-sided forums such as Juli’s or your offerings. So while the two of you negatively shared your positions I don’t recall reading about alternative options for wellness from either of you. I personally was attacked by Juli and her entourage for attempting to share proactive alternative treatment options and in one classic statement directed at me to be informative and substantive which I can’t forget, “Don’t you know electricity is dangerous?”
Am I out of line…? No!...but now that you’ve confirmed you’re years and long-time goal of “I’ve told you so” which I also knew probably before you reached maturity, what do you plan on doing to proactively advocate and share your vast wealth of research and knowledge for those still trying to achieve wellness or is a negative activism your life style of writing?
What are you two very knowledgeable ECT protagonists going to do now that you’ve been vindicated?
Warmly,
Herb
VNSdepression.com
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Posted by: Herb Stein | December 26, 2006 01:55 PM
Oh. My. God.
A lot of words, but you can't find one place where Juli or I advocate banning anything. In our words, not yours.
Please get a life.
And as to what am I doing? I have written a book. I hope you will read what I say instead of speaking for me.
Good night.
Posted by: Linda Andre | December 30, 2006 11:39 PM