Why are people harmed by ECT so often ignored — even when they reach out directly to researchers?
Content Warnings: Brief mention if abuse and suicide.
In this episode, we continue reading emails from injured ECT patients who reached out to government-funded researcher Harold Sackeim, only to have their pleas for help ignored.
Sackeim had publicly invited people experiencing memory problems after ECT to contact him—but, according to author Linda Andre, he later testified that he discarded 175 of those messages.
Through these stories, we dig deeper into the history of why people harmed by ECT are so often not beleived.
this is for educational purposes only. I’m not a medical professional, and nothing here should be taken as medical advice. I’m sharing my understanding of the public record and other published works on this topic.
Show Notes:
https://docs.google.com/document/d/1C_PesMA4_CFCPkLXojJWSjP8ipq9SGTGo2r5KBeo5Oo/edit?usp=sharing
🎵 Music Credits:
Intro/Outro: "Naya Instrumental" by Tomh
Artist: @tomh_music
Track: https://soundcloud.com/tomh_music/naya-instrumental
Used under free license with attribution
In this episode, we continue reading emails from injured ECT patients who reached out to government-funded researcher Harold Sackeim, only to have their pleas for help ignored.
Sackeim had publicly invited people experiencing memory problems after ECT to contact him—but, according to author Linda Andre, he later testified that he discarded 175 of those messages.
Through these stories, we dig deeper into the history of why people harmed by ECT are so often dismissed and disbelieved.
Show Notes
https://docs.google.com/document/d/1C_PesMA4_CFCPkLXojJWSjP8ipq9SGTGo2r5KBeo5Oo/edit?usp=sharing
Life After ECT Inc. is a 501(c)(3) charitable organization dedicated to improving the lives of those harmed by ECT through advocacy, education, and research. Learn how you can support our work.
If you’re struggling after ECT, you’re not alone.
I’m Anna, a childhood psychiatric drug and teen electroshock survivor. After my brain was damaged by ECT in 2006, I was met with silence and denial from the medical system.
That’s why I founded Life After ECT—the first nonprofit dedicated to helping survivors through advocacy, education, and research.
On this channel you’ll find video essays, survivor stories, expert talks, and resources to help you understand your injuries and start rebuilding your life.
Learn more at LifeAfterECT.org
In this episode, we revisit a 2010 FDA letter by Linda Andre, and emails from ECT survivors who reached out to goverment funded researcher, Harold Sackeim, for help.
Sackeim had publicly invited people experiencing memory problems after ECT to contact him—but according to Linda Andre, he later testified that he discarded messages from 175 patients who wrote to him asking for help.
Show Notes
Life After ECT Inc. is a 501(c)(3) charitable organization dedicated to improving the lives of those harmed by ECT through advocacy, education, and research.
Learn how you can support our work.
This video is for anyone who feels like they lost a part of themselves after ECT. I want to give voice to the unseen challenges so many face after electroconvulsive therapy. Many who’ve had ECT are living with undiagnosed, untreated disabilities—struggling to find acknowledgment and support. The aftermath of ECT can be life-changing, impacting everything—identity, career, and relationships. I created this video essay to process my own experience of becoming disabled after ECT.
My hope is that it will help you know that your experience is real and you are not alone.
This video was originally uploaded to YouTube in 2016. ResourcesGrief After ECT: https://lifeafterect.com/disenfranchised-grief-the-unseen-pain-of-those-disabled-by-electroconvulsive-therapy-ect/
Resources: https://lifeafterect.com/resources/ ECT Stories: https://lifeafterect.com/ect-stories/
Learn how you can help all who undergo ECT live their best life by supporting reforms that will ensure informed consent, rehab if recipients need it, and more https://www.change.org/p/standardize-regulate-audit-shock-treatments-electroconvulsive-therapy-or-ect ------------ Life After ECT Inc. is a 501(c)(3) nonprofit organization dedicated to improving the lives of people harmed by ECT through advocacy, education, and research.
https://lifeafterect.com/donate
This video is for anyone who feels like they lost a part of themselves after ECT.
I want to give voice to the unseen challenges so many face after electroconvulsive therapy. Many who’ve had ECT are living with undiagnosed, untreated disabilities—struggling to find acknowledgment and support. The aftermath of ECT can be life-changing, impacting everything—identity, career, and relationships. I created this video essay to process my own experience of becoming disabled after ECT.
My hope is that it will help you know that your experience is real and you are not alone.
This video was originally uploaded to YouTube in 2016. Resources
Grief After ECT: https://lifeafterect.com/disenfranchised-grief-the-unseen-pain-of-those-disabled-by-electroconvulsive-therapy-ect/Resources: https://lifeafterect.com/resources/ ECT Stories: https://lifeafterect.com/ect-stories/
Get Involved
Learn how you can help support people harmed by ECT
https://www.change.org/p/standardize-regulate-audit-shock-treatments-electroconvulsive-therapy-or-ect ------------ Life After ECT Inc. is a 501(c)(3) nonprofit organization dedicated to improving the lives of people harmed by ECT through advocacy, education, and research.
https://lifeafterect.com/donate
12/6/24
Update: David Russel has been released!
The following is an update on forced drugging and ECT hearings.
Content Warnings:
Life After ECT, Inc. is a 501(c)(3) charitable organization dedicated to improving the lives of those harmed by ECT through advocacy, education, and research. Learn how you can support our work.
Does Electroconvulsive Therapy have a place in 21st century evidence-based medicine?
The following is a Presentation by Professor John Read given in March 2024.
Dr. John Read is Professor of Clinical Psychology at the University of East London. He has published over 180 research papers and in 2022 was listed in Stanford University's register of the top 2% most cited researchers in the world.
He has published six reviews of the ECT research literature (including four in peer-reviewed journals) and made multiple commentaries on the research.
His most recent peer-reviewed review of the ECT literature was a 40-page paper, in 2019, written with Professor Irving Kirsch, Associate Director of Placebo Studies at Harvard Medical School.
He is also the lead researcher on two independent audits of the administration and monitoring of ECT in England's Health Service and co-author of three studies of the accuracy of information provided to ECT patients and their families.
https://www.uel.ac.uk/about-uel/staff/john-read
His latest research:
This presentation was in colaboration with Participation and the Practice of Rights (PPR)
https://www.nlb.ie/campaigns/mental-health
Full presentation: https://www.youtube.com/watch?v=MY5CTuMbW2w&t=2s
David Russell is an involuntarily committed patient at the Minnesota Mayo Clinic, who has been subjected to forced electroshock therapy (ECT) against his will.
His case has drawn significant attention and advocacy efforts fromMindFreedom International, an organization focused on human rights in mental health care.
Read David’s full story here:https://mindfreedom.org/front-page/david-russell/
Show Notes https://docs.google.com/document/d/1k2m7mZle83Snh_owlJ3B5NbrrkM6mqvg3FV3Z_HGSG8/edit?usp=sharing
Welcome to the Life After ECT podcast!
In this episode, we discuss:
- The reality of forced ECT still happening today.
- MindFreedom International's Shield Program, which helps protect against unwanted psychiatric treatment.
- The importance of psychiatric advance directives to formally assert your treatment preferences.
Learn how these resources can help you or a loved one, and how you can get involved in advocating for human rights in mental health care.
Disclaimers
Life After ECT Inc. is not directly affilated with Mindfreedom International -- we believe they are an invaluble human rights resource and want to make those at risk of forced treatment aware of the support they offer.
About Life After ECT Inc.
Life After ECT Inc. is a 501 (c)(3) charitble organazation dedicated to improving the lives of those harmed by electroconvulsive therapy through education, advocacy and research. Learn more about what we do and how you can support our work: Looking to a Brighter Future for Those Harmed by ECT
Show Notes
https://docs.google.com/document/d/1FAbX1qa0Z7UQz8vN47dx22ZPHyE1x5ZanWqsiJ73cBo/edit?usp=sharinghttps://docs.google.com/document/d/1FAbX1qa0Z7UQz8vN47dx22ZPHyE1x5ZanWqsiJ73cBo/edit?usp=sharing
Thank you for tuning into the Life After ECT Podcast.
Life After ECT Inc. 501(c)(3) nonprofit organazation focused on improving the quality of life for those injured by ECT.
Learn more about what we do and how you can support our work: Looking to a Brighter Future for Those Harmed by ECT
Show Notes: https://docs.google.com/document/d/1LrUHhroyOX66T7FUQ0iytyfNoCzmqKN91PQ0LfiKeBI/edit?usp=sharing
Correction: The law firm is now Wisner & Baum, not Baum Headlund
Disenfranchised grief: the unseen pain of those disabled by electroconvulsive therapy In this podcast, I talk about the grief that people disabled by electroconvulsive therapy (ECT) may experience, which often goes unrecognized. I want to clarify that I am not a mental health professional but someone who has gone through this experience, sharing what has helped my ongoing recovery. (see full disclaimer)
Resources mentioned in the episode: https://lifeafterect.com/disenfranchised-grief-the-unseen-pain-of-those-disabled-by-electroconvulsive-therapy-ect/ Support our mission: https://lifeafterect.com/donate/ Sign our patient safety petition: https://www.change.org/p/standardize-regulate-audit-shock-treatments-electroconvulsive-therapy-or-ect
Linda Andre Testimony - Vermont House Bill H12, Informed consent to electroconvulsive therapy, 1999
Testimony date: 2000
If you can, please consider supporting Linda's son's GoFund me to cover funeral expenses and preserve her library of research. Fundraiser by Alandra Markman : Linda Andre's Legacy (gofundme.com) ( https://www.gofundme.com/f/linda-andre )
Linda Andre Testimony - Vermont House Bill H12, Informed consent to electroconvulsive therapy, 1999
Testimony date: 2000
If you can, please consider supporting Linda's son's GoFund me to cover funeral expenses and preserve her library of research. Fundraiser by Alandra Markman : Linda Andre's Legacy (gofundme.com) ( https://www.gofundme.com/f/linda-andre )
An Interview with Linda Andre by Philip Bennet, recorded several years ago (the recording date was not included in the file). In it they discuss her book, Doctors of Deception, What they Don't Want You to Know About Shock Treatment.
Our community has recently suffered a great loss. Linda Andre, author of one of the most important books on ECT ever written, passed away this month. Linda was my hero. I first came across her work while desperately searching the Internet for answers when ECT damaged my brain and my doctors refused to believe me. Reading her presentation "Electroconvulsive Therapy as a Head Injury" changed my life.
Her work showed me that ECT can cause permanent brain damage and those affected by ECT are routinely denied testing and rehabilitation, as was the case with me. Linda showed me the hope of recovery through the stories of people who found a way to recover when doctors couldn't help them.
There is so much I want to say about Linda, but after ECT, the right words are always so hard to find. Until I can write a full tribute post I wanted to do something so I recorded a small tribute to ger along with her second inteview with Philip Bennet. In it they sumarize key points from her book.
Find links and resources and tributes to Linda Andre in the show notes.
Many harmed by electroconvulsive therapy (ECT) want to protect themselves from forced ECT in the future.
One way to do this is by creating a psychiatric advanced directive (PAD), which is a document that outlines their wishes regarding psychiatric treatment.
Content warnings: In this episode I briefly discuss forced treatment, unmodified ECT, and the limits of advanced directives. Be sure to practice self care if any of these topics are disressing to you.
Learn more about psychiactric advanced directives, forced and unmodified ECT in the show notes.
There are so many things I wish I had known before having ECT. The following are the focus of this episode:
citations and resources 5 Things I wish I knew before having ECT (electroconvulsive therapy)
This is a presentation by Sarah Price Hancock for the Stop Depression Summit, 2023. https://stopdepressionsummit.com/
Show notes and links
https://docs.google.com/document/d/1EWo9lkpuK2lU4roaMYumZ8fJ6ujM4UKc_IBvsOnskfk/edit?usp=sharing
About Sarah
Sarah lived for nearly two decades, misdiagnosed with severe “treatment resistant” mental illness. She was given 116 bilateral ECT treatments and now lives with Delayed Electrical Injury’s Myoneural Disorder.
Sarah holds a Master’s in Rehabilitation Counseling and taught for four years in San Diego State University’s Rehabilitation Counseling program. She also hosts The Emotional Self-Reliance Podcast and guest lectures on psychiatric recovery.
She founded a newly formed nonprofit, The Ionic Injury Foundation, with a focus on electrical injury research. Donate to her fundraiser https://www.gofundme.com/f/ionic-injury-foundation?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1
Learn how you can participate in electrical injury research.
Learn about Sarah’s campaign to ensure those harmed by ECT get the help they need and future ECT patients are protected through standardization and regulation.
