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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
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Disenfranchised grief: the unseen pain of those disabled byelectroconvulsive therapyIn 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
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Linda Andre Testimony - Vermont House Bill H12, Informed consent to electroconvulsive therapy, 1999
Testimony date: 2000
ā ā Links to Linda's Workā
If you can, please consider supporting Linda's son's GoFund me to cover funeral expenses and preserve her library of research. ā ā Fundraiser by Alandra Markman : Linda Andre's Legacy (gofundme.com)ā ā ( https://www.gofundme.com/f/linda-andre )
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Linda Andre Testimony - Vermont House Bill H12, Informed consent to electroconvulsive therapy, 1999
Testimony date: 2000
ā Links to Linda's Work
If you can, please consider supporting Linda's son's GoFund me to cover funeral expenses and preserve her library of research. ā Fundraiser by Alandra Markman : Linda Andre's Legacy (gofundme.com)ā ( https://www.gofundme.com/f/linda-andre )
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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.
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Have you experienced any unexpected problems after undergoing electroconvulsive therapy (ECT)? Have you faced difficulties in convincing your doctor to refer you for testing and rehabilitation?
You're not alone. For over 80 years that ECT has been in use, people have reported disabling side effects. Despite decades of ECT's use, no mandatory standards have been established to ensure that individuals can receive comprehensive testing and rehabilitation if necessary. View the ā ā ā #AuditECT petitionā ā ā .
In 2016, there was an opportunity to address this issue when the FDA attempted to reclassify the ECT device. The FDA's proposed guidance included mandatory neuropsychological testing for those undergoing treatment. However, the American Psychiatric Association (APA), a professional organization representing 36,000 psychiatric physicians, opposed the idea of mandated testing.
Eventually, when the reclassification was finalized, the original proposed testing mandates were abandoned.
There are people who underwent ECT many years ago and have never undergone a neuropsychological evaluation, not to mention the countless people who have recently undergone electroshock therapy. With an estimated 2 million people worldwide undergoing ECT each year, a staggering number of individuals will continue to struggle to access appropriate testing and treatment for disabilities caused by ECT and other health issues related to electrical injury.
See show notes for links and resources.
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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.
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There are so many things I wish I had known before having ECT. The following are the focus of this episode:
Like how my doctors would treat me after being disabled by the procedure
The "new and improved" safety measures aren't as effective as advertised
ECT's lasting impact on how the brain processes vision
That ECT doctors don't know much about electricity or what it does to the human body
Some people will experience serious disabling conditions from the electricity used to cause a seizure
citations and resources
5 Things I wish I knew before having ECT (electroconvulsive therapy)
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There are so many things I wish I had known before having ECT. The following are the focus of this episode:
Like how my doctors would treat me after being disabled by the procedure The "new and improved" safety measures aren't as effective as advertised ECT's lasting impact on how the brain processes vision That ECT doctors don't know much about electricity or what it does to the human body Some people will experience serious disabling conditions from the electricity used to cause a seizurecitations and resources ā 5 Things I wish I knew before having ECT (electroconvulsive therapy)
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This is a presentation by Sarah Price Hancock for the Stop Depression Summit, 2023. ā https://stopdepressionsummit.com/ā
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 ātreatment resistantā mental illness. She was givenā ā 116 bilateral ECT treatmentsā ā and now lives with Delayed Electrical Injuryās Myoneural Disorder.
Sarah holds a Masterās in Rehabilitation Counseling and taught for four years in San Diego State Universityās Rehabilitation Counseling program. She also hosts The Emotional Self-Reliance Podcast and guest lectures on psychiatric recovery.
She founded a newly formed nonprofit, The ā ā Ionic Injury Foundationā ā , with a focus on electrical injury research. Donate to her fundraiser ā https://www.gofundme.com/f/ionic-injury-foundation?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1ā
Learn how you can participate inā ā electrical injury researchā ā .
Learn aboutā ā Sarahās campaignā ā to ensure those harmed by ECT get the help they need and future ECT patients are protected through standardization and regulation.
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This is a presentation by Sarah Price Hancock for the Stop Depression Summit, 2023. ā ā https://stopdepressionsummit.com/ā ā
Show notes and links
ā https://docs.google.com/document/d/1EWo9lkpuK2lU4roaMYumZ8fJ6ujM4UKc_IBvsOnskfk/edit?usp=sharingā
About Sarah
Sarah lived for nearly two decades, misdiagnosed with severe ātreatment resistantā mental illness. She was givenā ā ā 116 bilateral ECT treatmentsā ā ā and now lives with Delayed Electrical Injuryās Myoneural Disorder.
Sarah holds a Masterās in Rehabilitation Counseling and taught for four years in San Diego State Universityās Rehabilitation Counseling program. She also hosts The Emotional Self-Reliance Podcast and guest lectures on psychiatric recovery.
She founded a newly formed nonprofit, The ā ā ā Ionic Injury Foundationā ā ā , with a focus on electrical injury research. Donate to her fundraiser ā ā https://www.gofundme.com/f/ionic-injury-foundation?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1ā ā
Learn how you can participate inā ā ā electrical injury researchā ā ā .
Learn aboutā ā ā Sarahās campaignā ā ā to ensure those harmed by ECT get the help they need and future ECT patients are protected through standardization and regulation.
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Bill SB898 Public Health Hearings, Connecticut
The state of Connecticut held public hearings on several bills that would impact forced electroconvulsive therapy (ECT) in that state.
This is the testimony of Emily Stanton, a concerned mental health advocate, regarding this bill in Connecticut that extends the timeframe a patient deemed unable to consent can be forcibly given electroshock and eliminates the probate court process.
Connecticut Public Health Hearings on SB898 ECT, February 1st, 2023
C G A (ct.gov)
2023SB-00898-R00-SB.PDF (ct.gov)
2021 Senate Bill 898 (wisconsin.gov)
Public Health Committee Public Hearing - YouTube
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Connecticut Public Health Hearings on SB898 ECT, February 1st, 2023
This is the testimony of ECT survivor Jill Edwards regarding a new ECT bill in Connecticut that extends the timeframe a patient deemed unable to consent can be forcibly given electroshock and eliminates the probate court process.
C G A (ct.gov)
2023SB-00898-R00-SB.PDF (ct.gov)
2021 Senate Bill 898 (wisconsin.gov)
Public Health Committee Public Hearing - YouTube
The state of Connecticut held public hearings on several bills that would impact forced electroconvulsive therapy (ECT) in that state.
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Connecticut Public Health Hearings on SB898 ECT, February 1st, 2023
C G A (ct.gov)
2023SB-00898-R00-SB.PDF (ct.gov)
2021 Senate Bill 898 (wisconsin.gov)
Public Health Committee Public Hearing - YouTube
More works by Professor Read
John Read and Irving Kirsch ā Electroconvulsive Therapy (ECT) Does the Evidence From Clinical Trials Justify its Continued Use? ā Mad in the UK A second independent audit of electroconvulsive therapy in England, 2019: Usage, demographics, consent, and adherence to guidelines and legislation Why arenāt patients being told truth about electric shock therapy? --- Send in a voice message: https://podcasters.spotify.com/pod/show/lifeafterect/message -
Bill SB898 Public Health Hearings, Connecticut
The state of Connecticut held public hearings on several bills that would impact forced electroconvulsive therapy (ECT) in that state.
This is the testimony of ECT survivor and attorney Kathy Flaherty regarding a new ECT bill in Connecticut that extends the timeframe a patient deemed unable to consent can be forcibly given electroshock and eliminates the probate court process.
View written testimony 2023SB-00898-R000201-Flaherty, Kathy, Executive Director-Connecticut Legal Rights Project-Opposes-TMY.PDF.
Connecticut Public Health Hearings on SB898 ECT, February 1st, 2023
C G A (ct.gov)
2023SB-00898-R00-SB.PDF (ct.gov)
2021 Senate Bill 898 (wisconsin.gov)
Public Health Committee Public Hearing - YouTube
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Bill SB898 Public Health Hearings, Connecticut
Chris Dubey is a survivor of forced electroconvulsive therapy (ECT).
Read his written testimony We Must Not Remove Legal Protections for People at Risk of Forced ECT - Mad In America
Connecticut Public Health Hearings on SB898 ECT, February 1st, 2023
C G A (ct.gov)
2023SB-00898-R00-SB.PDF (ct.gov)
2021 Senate Bill 898 (wisconsin.gov)
Public Health Committee Public Hearing - YouTube
--- Send in a voice message: https://podcasters.spotify.com/pod/show/lifeafterect/message -
Connecticut Public Health Hearings on SB898 ECT, February 1st, 2023
C G A (ct.gov)
2023SB-00898-R00-SB.PDF (ct.gov)
2021 Senate Bill 898 (wisconsin.gov)
Public Health Committee Public Hearing - YouTube
The state of Connecticut held public hearings on several bills that would impact forced electroconvulsive therapy (ECT) in that state.
This is the testimony of Sarah Price Hancock, MS, CRC, regarding a new ECT bill in Connecticut that extends the timeframe a patient deemed unable to consent can be forcibly given electroshock and eliminates the probate court process.
Sarah lived for nearly two decades, misdiagnosed with severe ātreatment resistantā mental illness. She was given 116 bilateral ECT treatments and now lives with Delayed Electrical Injuryās Myoneural Disorder.
Sarah holds a Masterās in Rehabilitation Counseling and taught for four years in San Diego State Universityās 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.
Learn how you can participate in electrical injury research.
Learn about Sarahās campaign to ensure those harmed by ECT get the help they need and future ECT patients are protected through standardization and regulation.
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Electroconvulsive therapy ( ECT ) destroyed my life but Iām not allowed to say it.If I do I get treated like a crazy liar. Iām accused of stigmatizing mentally Ill people who depend on ECT for survival.Some call me anti- science, others have called me a religious extremist.I've been told to shut up and stop complaining, that I āknew what I was getting intoā when I agreed to have shock therapy.I did not because I was a minor who was not given full informed consent.And let's be honest, ECT consent for minors is an illusion, anyways; brain development doesn't stop till early 20ās.As for consent, I was told ECT, once controversial, was now a legitimate, science based treatment that can be life saving. āItās not like One Flew Over The Cuckooās Nest Anymore, the mantra goes.āFor risks I was told ECT was safe, effective and did not cause brain damage. I was told any memory problems I had were temporary.None of this was true. I have brain & nervous system damage from ECT. I Am severely disabled. Now 13 years after my last treatment I am showing signs of neurodegeneration in my 30s ala long term sequelae of electrical injury.ECT defenders demand it be treated like a legitimate medical procedure but they donāt apply those same standards to themselves. If a patient has a known side effect the doctor acknowledges and treats it. Think of a surgeon taking post-op x-rays and writing physical therapy referrals for a knee replacement patient to get them walking after the trauma surgery.Doctors refused to believe me when I was suffering dangerous, debilitating, known side-effects from shock treatment. Eventually I got tested and have been diagnosed with chronic encephalopathy, anterior grade amnesia, working memory deficitā all evidence of brain damage. I still can't get any doctors to help treat these progressive injuries that are becoming life threatening. Seizures, heart abnormalities, acquired channelopathies, etc.Yet Iām not allowed to speak my truth. Iām not allowed to raise awareness that I was harmed and will die without correct medical care.What's worse? Iām not an outlier; Iāve met hundreds of injured ECT patients with similar outcomes and read even more accounts of serious disability from electroshock. Their doctors won't help them. They can't work, can't take care of themselves, and don't remember what they ate for breakfast.The trauma, confusion of brain damage and gaslignitng leaves many of us suicidal. We're constantly told weāre imagining things, ECT doesn't do that, it's your mental illness, get over it, you chose this, stop stigmatizing people who need ECT.--- Send in a voice message: https://podcasters.spotify.com/pod/show/lifeafterect/message
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First Aired: 05-12-2009 on Madness RadioECT SURVIVOR ACTIVIST AND AUTHOR LINDA ANDRE TALKS ABOUT HER BOOK, DOCTORS OF DECEPTION, WITH MADNESS RADIO (2009.)
Linda Andre became an accidental activist after her life was irreparably altered by ECT. She lost five years of her life and suffered permanent cognitive disability after a series of treatments she was aggressively coerced into having.
Andreās journey would lead her to the electroshock survivor community and activism, later to write what many consider the definitive book on electroshock, Doctors of Deception: What They Donāt Want You to Know about Shock Treatment.
In this interview, Linda discusses her experience, the complex history of shock therapy, and elaborate efforts by the industry to mislead and suppress information about ECTās true risks, side effects, and efficacy.
If I could summarize my book in one sentence it would be this: if you tell a big lie and you tell it often enough and itās big enough people will believe you.~Linda Andre
Listen hereECT MYTHS DISCUSSED: Modified ECT isnāt new ā electroconvulsive therapy performed under anesthesia with muscle paralytics have been in use since the 1950s. Modified ECT is physically more damaging to the brain because the seizure threshold is raised by anesthesia, requiring more electricity to induce convulsions Pure oxygenation is used to make seizures last longer, not to improve patient safety. Patients injured by ECT struggle to be taken seriously by doctors, the media, and society. See ECT Arguments: All Medical Procedures Have Risks Celebrity ECT promoters like Kitty Dukakis and Carrie Fisher have acknowledged they have experienced permanent memory loss. Psychiatry lobbied against FDA safety testing at a time the device was supposed to be proven effective or taken off the market. Conflicts of interest are rife in ECT research.Show Notes
https://docs.google.com/document/d/1SCiXfxFswJZNVzdp84ZOWNbG3EwPYsUHpKUHsD82Z5g/edit?usp=sharing
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I often get asked if electroconvulsive therapy can erase bad memories. I made this video to answer that question by sharing my experience with traumatic memories before and after shock therapy to show how it can impact people with this condition.
Can ECT erase bad memories? Electroconvulsive Therapy and The Eternal Sunshine of the Spotless Mind - Life After ECT
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