What 776 ECT Recipients Want You to Know

After more than 15 years of researching electroconvulsive therapy (ECT) and a decade of participating in and moderating a private, international support group explicitly created for ECT recipients, the chasm between peer-reviewed ECT research authored by ECT providers and private conversations amongst ECT recipients is growing wider. ECT provider-authored research contains closed-ended, fixed questions designed to elicit answers fitting the hypothesis that ECT is a “gold-standard,” “safe and effective” procedure. What would happen if ECT recipients from community settings (outside clinical trials) were given the opportunity to respond to two open-ended statements without “leading the witness”?

The largest international survey of ECT experiences ever conducted chose to give that opportunity to ECT recipients. It posed two open-ended, fill-in-the-blank type statements: ‘Please name up to three positive effects of your ECT, if any’ and ‘Please name up to three negative effects of your ECT, if any’. Spontaneous responses to these two statements were entered into the survey immediately after gathering recipient demographics and prior to posing close-ended questions to understand ECT experiences. The resulting responses came from 41 countries; the large majority having received ECT in the United States (73%). More than half the respondents had ECT in the previous 10 years (2015-2024). Results, newly published in the Journal Of Affective Disorders, highlight a vast dichotomy between ECT clinical trial research presented in the informed consent discussions and community setting outcomes.

Reported Benefits: Present, but limited

When asked to identify positive ECT effects, only positive ECT effects were identified by a staggering minority (3.2%) of 776 respondents. A larger minority could identify only one positive effect (48.8%). The most reported positive effects were (reported by more than 3.1% of respondents): varying degrees of ‘Improved mood’ (23%), varying degrees of ‘reduced suicidality’ (13%), and varying degrees of reduced psychosis (3.1%).

Here are some of the benefits in their own words, shared proportionately as reported:

“Brief improvement in mood.” -31 f Sweden

“Slightly improved mood.” -31 f Canada

“I came rocketing out of extreme depression.” -33 m USA

“Elimination of suicidal ideation.” -61 m USA

“Less suicidal thoughts.” -33 f Belgium

“For a couple weeks after I was less suicidal.” -59 f Australia

“Decrease of auditory hallucinations.” -31 f S Korea

“Small amount of relief.” -56 f USA

“Slightly worked for a little while.” -35 m USA

“I like being given an anaesthetic because it felt like dying peacefully and being totally free of my pain for a short time.” -42 f UK

Reported Costs: Present, and overwhelming

When asked to identify negative ECT effects, 96.9% spontaneously reported one or more negative effects. Only negative effects were reported by more than half of the respondents (51.2%). Mixed results were reported by 45.6% of respondents. The most spontaneously reported negative effects included Memory problems (81.6%), cognitive problems (29%), feeling abused, violated, and/or traumatized (8%), and ‘impaired relationships’ (5%).

I found it most revealing that “the average number of positive outcomes reported per person was 0.96, compared to a mean of 2.48 for negative outcomes.” In looking at the frequency of negatives compared to positives, it begs the question, what was the cost of these benefits?

Here are some of the “costs” in their own words (proportionate to those reported):

“I lost 19 years of memory including my children growing up.” -37 f USA

“Lost 4 years of long term memories completely. It is as if those years of my life did not happen.” -20 f Australia

“I could not teach any more, as I had forgotten whole chunks of information that had been garnered over 30 plus years.” -46 f USA

“Memories of significant events with my children permanently erased. Hard to remember much at all about their early lives, birthdays, first days at school, activities … I also don’t remember my wedding.” -42 f UK

“Can’t do math or any of the things I have studied.” -30 f USA

“Forced to resign from working as a registered nurse due to loss of cognition.” –24 f USA

“Struggled with memory loss and poor concentration for years after, and memory/intelligence had always been an important part of my identity, so identity loss.” –27 f Australia

“Loss of job, permanent SSA disability, brain changes per several MRIs.” -35 f USA

“Years of memories of academic and biographical content are gone.” -19 m USA

“Even years later, I still cannot recognize people I’ve known for years when I see them.” -35 f USA

“My IQ level has dramatically declined, university graduate having to relearn basic English and math.” -25 f Australia

“Cannot think nor process information.” -57 m USA

“Debilitating loss in executive function, especially concentration.” -64 m USA

“Terrible and frequent migraines.” -46 f USA

“My PTSD got much worse.” -44 m Norway

“Retraumatised. Held down and body ‘done to’ against my will.” -50 f UK

“Fear and terror at having things done to me which reminded me of childhood assault and made my symptoms worse.” 36 non-binary Australia

“As someone with a history of childhood abuse and rape, knowing I was given ECT so many times without proper facts and other options for addressing the cause of my depression, self-harm and suicidality, feels like being raped all over again.” -42 f UK

“I felt violated in a way that shouldn’t be possible. Our memories should be inviolable. Over time I came to see that this was just another rape, but of my mind. Part of me was stolen, violently. ECT was abuse.” -35 f Australia

“I live in fear of this happening to me again. Just 2 years ago I narrowly missed being detained by psychiatry and my GP was saying she thought I should have ECT. I was terrified.” –31 f Australia

“Lost who I was and it affects all my relationships.” –36 f USA

“Even years later, I still cannot recognize people that I’ve known very well for years when I see them until they remind me of their name AND how we know each other.” –35 f USA

“Relationships are established by shared experiences, shared interests and shared memories–wipe the memories and the relationship no longer exists.” -34 f USA

“Inability to hold a job for two years.” –26 m Brazil

“Severe memory loss causing loss of job & career as health care professional.” -48 f Canada

“Loss of my career as a medical doctor.” –35 f Canada

“I had to teach myself how to learn new things again, which affected my work and university greatly. This caused huge career and financial effects.” -20 f Australia

“Confused.” –36 m N Zealand

“Inability to focus.” -40 f USA

“Struggle with emotional connection and maintaining healthy relationships.” -19 f UK

“Social stigma, feeling like a “freak” who had her brain fried.” –40 f USA

“Loss of trust in family and in almost any doctor.” –21 f USA

“I lost trust in my family and most people and of course the medical system.” –26 f Egypt

“Unable to experience any joy.” -38 f Canada

“Emotionally void for years afterwards.” –47 f UK

What stands out about the self-reporting negatives is the amount of consistency between individuals’ experiences. Most of the costs were lasting, life-altering consequences.

Open-ended statements allowed ECT recipients to define what they felt was evidence of their ECT experience. Data collected in the ECT recipients’ own words gives voice to their most pressing ECT benefits and costs—many of which had not previously been captured in large studies of ECT experiences. These open-ended questions captured how recipients felt ECT impacted their lives. The information was volunteered, uninfluenced by the research team. That said, in general, people are more likely to be candid with others who have similar experiences and the research team was very open about having three ECT recipients.

Yes, this is a convenience sample, gathered from English speaking ECT recipients worldwide. We didn’t have means to translate it. Some may be tempted to question whether ECT experiences in the words of those who had it are valid. Whose voices should be counted in ECT evidence? It’s the recipients not the providers that live with the procedures’ effects.

My co-author, Lisa Morrison, an ECT recipient, commented:

“Patients harmed by ECT have been ignored and silenced for decades. There is no monitoring of the effects beyond the end of treatment nor access to rehabilitation for debilitating and permanent life-altering consequences. Why are psychiatrists with the power and influence to change this, ignoring or undermining those of us harmed? Why do public regulatory bodies allow this to continue? These are human rights failings in plain sight.”

Another co-author, and former physician until ECT made it impossible for her to continue adds:

“This research acknowledges the lived reality of ECT patients by giving a voice to both the positive and negative experiences of patients. ECT psychiatrists repeatedly state that ECT cannot cause brain damage. But I was diagnosed by a neuropsychologist as having ECT brain injury.”

Lead author, Dr John Read, Professor of Clinical Psychology at the University of East London, commented:

“This overwhelmingly negative appraisal of ECT, by the largest international sample of patients to date, suggests that psychiatrists are misleading patients and relatives when they tell them it is safe and effective.

How is it possible to have such benefits versus costs disparities?

Historical ECT research demonstrated eight hospitals within the same geographic region had a spectrum of outcomes ranging from improved to grossly cognitively impaired six months after treatment course. A vast outcome spectrum for a procedure touted as “safe and effective.” What can we expect from a procedure without performance measure protocols?

At a minimum, these spontaneous self-reported effects should cause each member of the public to question what they’ve been told about electroconvulsive therapy. Who holds the authority of describing how ECT affects human lives? Those giving it, or those who received it?

These results humanize the real-world consequences of ECT in community settings, giving empirical weight to what I learned the hard way: ECT is neither reliably safe nor reliably effective—though our doctors promised it was. After nearly a century of ECT research, psychiatry has yet to determine a standardized approach that routinely optimizes clinical benefit while consistently limiting injury. While I celebrate the small percentage who feel they benefited, I intimately understand and mourn with those who reported devastating neurological consequences, breaking of familial and social relationships, career loss, and a litany of other grossly underestimated negative outcomes. I especially mourn with family members whose loved ones were killed. This study demonstrates a profound need for patient registries to track immediate and longer-term outcomes, comprehensive assessments, and appropriate rehabilitation intervention development to improve quality life after ECT. (Results reported in a separate article revealed almost half (49.1%) of respondents felt ECT worsened quality of life; some recipients said ECT made their life “much worse” (21.6%), others felt ECT made life “very much worse” (27.5%).

Now that ECT recipients have been given a voice, is the general public prepared to listen? Devastating costs and inconsistent, unreliable benefits lead me to wonder what must we do to protect vulnerable fellow humans desperate for “safe and effective” treatment because what was once considered a “gold-standard” now seems like pyrite.