Here I sit on a Sunday morning at my church, synagogue, temple, mosque, sacred space of inclusion – my laptop – emailing Pam Hyde, Administrator of the Federal Substance Abuse and Mental Health Services Administration (SAMHSA) in the U.S. Pam asked if the Today Show presented a balanced point of view of ECT treatment itself — pros and cons. My email to her of a few minutes ago stated “The Today Show was not balanced at all which is why we did the ‘One sided…’ press release (see below). Our wisdom from lived experience continues to be blocked by mainstream media outlets. How can we work more effectively together so that by 2020 ‘Nothing About Us Without Us’ becomes a reality in America?” (Side note – upon 2 minutes of reflection I shortened the time line when I realized it was achievable if the administration and major agencies in the U.S. made it a priority.)
My response to Pam continued “Here’s a link to the Today Show segment, along with a transcript. They mention side-effects but give them very short shrift. The key factor is that we gave them five willing shock survivors standing by their phones to be interviewed in preparation for being on the show, and the producers only called one of them (Tom Irr) and then later called to tell him that they “probably” wouldn’t be airing the segment. But, of course, they chose to air the segment, and only interview people who were happy with their ECT experiences — one of whom is a famous author, which gives his testimony more weight. We all know that many people are happy with their experiences. That’s why most of us are not asking for a ban on ECT — just for the opportunity for truly informed consent so that people can weigh the potential benefits along with the serious risk of adverse effects.
The principle of “Nothing About Us Without Us” requires both that the story of ECT include the stories of those harmed by it, and that decisions regarding its use be made with the full participation and consent of those affected. Given the risk brain damage, memory loss and, with it, years of a life; theories that the “positive effects” of ECT are in fact a side-effect of brain injury (shock) which some experience as a form of numbness or euphoria; evidence of substantial relapse following ECT , of high hospital re-admission rates, and the lack of solid scientific data regarding why ECT works at all; a fully informed person given a meaningful role in the decision-making process might consider carefully whether it is truly the best – or even last – resort.
For Immediate Release
National Mental Health Coalition Calls “Today Show” Electroshock Segment One-Sided
Coalition Recommends Balanced Coverage of Controversial Intervention
WASHINGTON, DC (8/22/13) – The National Coalition for Mental Health Recovery (NCMHR) urges “The Today Show” to provide balanced coverage of the risks of electroconvulsive therapy (ECT), in which grand mal seizures are electrically induced, usually to treat severe depression.
The NCMHR is responding to a one-sided segment about ECT that “Today” ran on August 20, 2013.
“We are disappointed, especially because two NBC producers had sought out ECT survivors who could attest to the disabling effects of this controversial treatment,” says NCMHR director Lauren Spiro, who was diagnosed with chronic schizophrenia. “The producers were given contact information for five willing individuals, but chose not to include them.” The producers later called this an editorial decision.
Mental health advocates demand that potential ECT recipients be told the truth about the risk of disabling effects – including permanent memory loss and cognitive deficits – so they can make an informed choice. These risks have been confirmed by researchers such as Dr. Harold Sackeim, a well-known proponent of ECT, whose 2007 study in Neuropsychopharmacology concludes: “this study provides the first evidence in a large, prospective sample that adverse cognitive effects can persist for an extended period.”
The Food and Drug Administration (FDA) continues to classify ECT equipment in its high-risk Class III category despite pressure from ECT equipment manufacturers to re-classify it into the lower-risk Class II.
ECT survivors speak about the devastating effects of ECT. In her acclaimed book, “Doctors of Deception: What They Don’t Want You to Know About Shock Treatment,” Linda Andre wrote, “Eventually you realize that years of your life have been erased, never to return. Worse, you find that your daily memory and mental abilities aren’t what they were before.”
“The research is clear: ECT causes closed head injury, temporary euphoria, then return of depression but with enduring memory loss,” says psychiatrist and NCMHR board member Daniel Fisher, M.D., Ph.D. He noted that, while many may experience a lifting of depression, this is temporary, but the disabling effects are permanent. Also, many ECT survivors say their depression was exacerbated by the stress associated with their ECT-related cognitive disabilities.
“We recommend more media coverage of innovative, non-invasive, cost-effective mental health interventions, including ‘peer-run services’ delivered by people who have recovered from severe mental health issues,” says Spiro.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
I was given 2.5 years of ECT as ”clinically necessary treatment” in an Austin psychiatric facility which is typically the facility one goes to for ECT locally in addition to 1 other site that I know of. It was humiliating. It hurt and it was quite physically painful. I often required up to four (4) types of anesthesia to put me out and in addition to the local for the sting with the needle, my body would arch from the burn until I went out. Then when I woke up, the challenge would be not to urinate in my pants but I always did and that was also embarassing. My faithful partner would be there waiting for me on the other end of tx and hold me by my elbow and guide me out, step by step by step by step by step. It was a ”clinically necessary treatment” in my recovery because I was strewn with SI and attempts. The attempts did stop. What did begin were the long term and short term memory lapses and the forgotten years of life, of love, of family, of friends, of work… I am grateful for my for 1 friend who was loyal enough to stand by my side during this time and while my life was dark at the time, I worked my way through it with the help of NAMI Texas, of DBSA Texas later, volunteering and giving back, etc… What is interesting to me now are the many women I come into contact with who undergo regular ECT as a normal course of their monthly tx in Austin for their major depression or bipolar and I would be interested in hearing from them as well. Those were not happy times and I am the stronger for it. Thanks for your post, Lauren.
Thanks, Jen. I too had a horrific experience with ECT and would love to know what those people who like it have to say. I can hardly imagine!
Thank you all so much for posting your thoughts, ideas and experiences. I will continue following replies to this posting and when I can I will reply as I am doing now. As a representative of the National Coalition for Mental Health Recovery I will say that we are pro-choice and pro playing in the sandbox. Our coalition represents the coming together of the voice of both consumers and psychiatric survivors in the United States. By playing in the sandbox, I mean that we work collaboratively with other stakeholder organizations and agencies to forge a more inclusive, respectful and humane America which includes a better health care and mental health system. There are many ways to affect policy change and to inspire and organize people to take action. I applaud each and every one of you for the work you are doing and for the work you will do. We are, I believe, at a tipping point. The more we can come together and stand firmly on common ground the more effectively we will create the America we want.
My vision (personally) and what I work towards is that no one would ever need invasive and potentially damaging “mental health” intervention. I also respect that, considering all the circumstances, people will chose what makes sense for them. Dorothy’s point about what is truly informed consent is an excellent one. Every individual deserves the right to define informed consent, and how that is made. If I am not able to make a decision I should have the right to have others of my choosing make that decision based on my previously stated, and preferably written, wishes.
There are so many things wrong with our health and “mental health” system. People mean well but cause harm because they don’t know any better. I strongly urge you to join with others, form a coalition or join one. Make sure your voice is heard because every voice is important.
Emotional CPR (eCPR) is one way we are educating people about how to create a more just world. Although it was originally created to teach people how to support others through an emotional crisis, people around the world are telling us that it is a way of life and that using it has improved all of their relationships. People tell us that eCPR training reminds them that we are human, that we have big compassionate hearts that are full of giving and receiving kindness and love. I am not sure that I can think of a better way to change the world. Can you?
I “played in the sandbox” when I testified at the FDA hearings in January 2011. It was a very educational and emotionally draining experience for me as well as for the others who testified with me on that day. Nothing has changed as a result of our testimonies, and this can be further seen in The Today Show presentation. Being in the room with, and testifying before, those very doctors who give ECT was extremely difficult. I will not get in that sandbox again, or any other, with people who have never experienced the very atrocities that they are supporting. I never realized that most of the coalition supported the use of ECT (with “informed” consent). Everyone I know who has been brutalized by it is in favor of a total BAN. As you can see here, this subject has touched a raw nerve with me.
How can the National Coalition for Mental Health Recovery be “pro-choice” on a practice they also describe as “permanently disabling?”
Quote: “The research is clear: ECT causes closed head injury, temporary euphoria, then return of depression but with enduring memory loss,” says psychiatrist and NCMHR board member Daniel Fisher, M.D., Ph.D. He noted that, while many may experience a lifting of depression, this is temporary, but the disabling effects are permanent.”
So if the NCMHR is also “pro-choice” about ECT then either (1) they are not telling the truth that the believe the practice causes brain damage and is permanently disabling or (2) have an reprehensible and cowardly position of calling for “choice” in harmful practice – much like we should and would criticize someone who today advocated “choice” in the use of lobotomy, rather than a ban on the practice.
Divide and conquer: Please do not use divide and conquer tactics on the community against electro convulsive “therapy”.
The only people that can ban E.C.T. are doctors themselves.
People who voluntarily take psychiatric drug are giving themselves a slow self lobotomy in my opinion. http://www.nature.com/news/2011/110207/full/news.2011.75.html
Question for Andrew L. Yoder : Do you also call for a ban on psychiatric medicine? If not(1) you are not telling the truth or (2) have an reprehensible and cowardly position to allow the prescribing of drugs that shrink the brain.
It is all about following orders. Consume the correct drug to be happy.
I would call for a ban on any practice where the harm disproportionately outweighs any gains. That seems a reasonable stance to take. It’s why I have no trouble with the fact that lobotomies are no longer acceptable practice.
Raising the same issues with ECT is more than fair.
When I first saw this post of yours appear, yesterday, I read it and was very impressed.
It’s a very important press release.
I was going to offer a brief comment then, but your post disappeared, until this morning. (Maybe there was a glitch on the MIA website, or maybe you had second thoughts about posting it then? Maybe you felt it needed some editing? In any case, the web page was gone by the time I attempted to offer a comment.)
So, I went immediately and read your preceding two MIA blog posts [“Emotional CPR as a Way of Life,” of February 12, 2013 and “eCPR (Emotional CPR): A Tool & a Process of Peacemaking” of April 4, 2013] and became even more impressed!
I had not previously been aware of “eCPR” and NCMHR.
Though I am principally opposed to government interference in people’s ‘mental health’ (hence, I am very, very deeply skeptical of most campaigns which hope to ‘improve’ the “mental health system”), these principles of “eCPR,” which you’re promoting actually resonate very beautifully with values that I hold dear.
So, I visited the NCMHR website (the National Coalition for Mental Health Recovery – http://www.ncmhr.org), where you are director, and I saw how, clearly, you and your organization are doing great work.
Indeed, I’m inclined to say that, if anyone can help to substantially improve the ‘mental health system,’ you and your organization can.
My only question for you, now, is this: Why do you say, in that press release (above) that you were “diagnosed with chronic schizophrenia”?
Why not say, instead, that you were “labeled with chronic schizophrenia”?
Of course, here I may seem as though splitting hairs (critiquing one single word in your press release!); but, to my way of thinking, saying “labeled” makes a million times more sense than saying “diagnosed” — especially, as I see that, on the NCMHR website, in your bio, we can read that you “traveled a long road from being labeled and institutionalized as a teenager with chronic schizophrenia…”
Obviously, you have traveled well — far from that time, of having been labeled by psychiatry…
And, “labeled” is the better (more accurate) word, I think.
IMO, psychiatrists merely flatter themselves by presuming to “diagnose” people.
You are doing great work… Definitely.
So, please, do keep up that work, be well, and more power to you!
thanks for writing. I am not sure what happened to the ECT blog – I hope you have access to it. I did not change it after it was posted. Today is my last day with the NCMHR. It has been a great 8 years working to bring the c/s/x community together behind public policy priorities and raising our voice on the local, state and federal level. You can find me on http://www.laurenspiro.com and I continue to work to expand eCPR (www.emotional-cpr.org) as well as travel the U.S. on my Dialogues of Discovery book (memoir) tour.
I write here as someone who was given shock treatment as a child, and who has spent most of his life recovering from that and trying to take away the power of psychiatrists to do such a thing.
I have to ask, why should the media pay any attention to us when they know our “movement,” for the most part, has been created and paid for by the system it occasionally pretends to criticize? Fifty years ago, a quarter of a million people gathered in Washington and heard, among many other inspiring speeches, Doctor King talking about his dream of equality and justice. He wasn’t taking handouts from the White Citizens’ Council. He was coming from years of making sacrifices, acting with courage, putting his life at risk. His bravery, and that of thousands of others, inspired the country and made America aware of the evil of racism in a way we had never acknowledged before.
The civil rights movement of the Sixties was a template for the movements for liberation that came after–gays, women, disabled people, and many others, including psychiatric survivors.
Yes, we followed that example and we had some success. But the system figured it out and offered bread and circuses, bribes and conferences, that would be controlled by people who cared about their own advancement and power and financial gain, and not the people whom they claim to represent.
If these “leaders” really want to change anything, they should be organizing demonstrations and civil disobedience in front of shock shops, not pretending that they are so important that all they have to do is send out press releases. The media know there is nothing behind those words that are issued by groups who would instantly vanish without their funding from the system.
Try giving up your bribes from SAMHSA, and then maybe someone will take you seriously. Right now all you represent is the system.
The Today Show was extremely one-sided, but that is not surprising since the media is supported and influenced by Big Pharma. My experience with ECT was horrifying, torturous, and it nearly killed me along with many of my brain cells. I, myself, am in favor of a complete BAN! I am not in favor of walking the politically safer tightrope of saying we are in favor of ECT as long as there is “informed” consent. I don’t think there is any such thing as “informed” consent when one is feeling that depressed.
Thanks Dorothy and others for speaking out strongly against this and other highly dangerous practices.
thanks for writing Ted. I find it very helpful to hear from the ends of the continuum of opinion – and I say that as a compliment. You, having choosen to work outside the system – are free to express yourself with complete transparency of your best thinking. I admire your tenacity, intelligence and passion. When I chose to attempt to represent the ‘national’ c/s/x voice in my working with the NCMHR – I understood my job to be that of navigating through tumultuous waters stirred by many diverse and often opposing view points. My personal opinion, when more radical or far from center – was not communicated publically as that would, at times, conflict with navigating the center of the NCMHR.
Unless I am completely deluding myself – I chose trying to unite this country in order to strengthen our advocacy voice and win some battles. NCMHR public policy priorities by the way have always been voted on by our national statewide membership.
I think the most effective way to effect change on the federal level is to get consensus from your constituency and advocate your ground. We win some battles but we don’t win the war for the hearts and minds of the people of America. While that saddens and unfuriates me sometimes – I think we give it our best shot.
We have won some important battles including NOT having ECT machines down graded to be considered more safe.
I am glad you will keep speaking your truth. I think it helps to keep us honest. At least it always gives me reason to pause and look at what I am doing and what the cost is of navigating the middle ground. Now that I am no longer working for the NCMHR I feel freer to speak my truth and do so in blogs, my memoir & other venues.
Comment removed for moderation.
Wonderful article. Wonderful press release. And of course the only type of person who would ever consent to electroshock is someone who has bought into the unproven quackery based claim that their despair in life is caused by some putative “brain disease”. Forced electroshock is a very real legal threat many of us face, me included. Thankfully I have not been involved in electroshock as of yet. But the fact that this decision may be ripped away from me by forced psychiatry, is an unacceptable disgrace.
Thanks so much for your positive action Lauren! People who are interested in reading your words might also be interested in this good news!
Thanks for all you support! Wow! We have reached over 12,000! Lets keep the momentum going! Share – Share- Share!!
I think there may be an answer to how ECT “works.”
It may “work” based upon some real scientific genius. –
“She falls down a well, her eyes go cross. She gets kicked by a mule. They go back. I don’t know.” – Cousin Eddie, ‘National Lampoon’s Christmas Vacation’
On a more serious note, it’s time to *abolish* ECT.
It has no place in a civil society. –
I apologize for the grammar.
What I was trying to say is that justifying the use of ECT to correct a medical condition makes about as much sense as the statement by Cousin Eddie, and it’s about as “safe” as getting kicked in the head by a mule.
I’ve been devastated by ECT. Often it was given to me involuntarily and sometimes “voluntarily” when I was so depressed I would have consented to euthanasia (strange how one can, at the same time, be competent to consent yet not competent to refuse).
Like any physical assault would, it did “work” in the short term, in that it kind of smacked some sense into me. That improvement quickly disappeared though and I was left with severe memory loss (both short and long term), continued severe depression and an inability to concentrate.
It is still almost impossible for me to concentrate enough to get through a magazine article and there are vast chunks of my past that are no longer available to me. It is my faint hope, though, that neuroplasticity is a valid phenomenon and that I’ll eventually recover.
I support the continued use of ECT only with true informed consent and never, ever as involuntary treatment. If that consent were truly informed, I doubt very much that people would do it.
“(ECT), in which grand mal seizures are electrically induced”
In the interest of informed consent, why not delete the acronym ECT and have the procedure legally and medically called exactly what it is (and never reduced to an acronym): Induced Grand Mal Seizure.
Hi, would you like an Induced Grand Mal Seizure to treat your condition?
and does it look anything like this?
“Hi, would you like an Induced Grand Mal Seizure to treat your condition?”
Ha, ha. “No. not so much… but thanks for asking!” What an excellent point, mjk!
I just Googled grand mal seizures, and apparently, people who have not been labeled by psychiatry are actually encouraged to avoid them. Go figure.
Did you notice the statement “Benefits are short-lived” on the text overlay towards the end of the segment? It’s hard to figure, because in every other respect the segment endorsed ECT whole-heartedly. I’ve written a post on this (ECT-Benefits are Short-lived).
thanks for writing a post on ECT Philip. Personally I find the procedure barbaric and unnecessary. There are many less invasive approaches that do not cause harm. Unfortunately we live in a society where many want – and are desprite for quick-fixes that in the end aren’t fixes at all.
And don’t get me started on the massive misinformation taught to medical students and the brainwashing done by big Pharma and the media out of fear, ignorance and greed
what can help 19-ect survivor to get lost functions if any?
I wish I knew! I think time passing allows some healing to take place, but I’m not aware of anything that can undo the damage other than the body’s own natural healing capacity. Anyone have any ideas?