Country music legend Naomi Judd died by suicide on April 30, 2022 after a public struggle to find relief from the deep distress and suicidal intensity that haunted her. Like the late actress Carrie Fisher, Judd had become an outspoken advocate of biopsychiatry, chronicling her experiences in a 2016 memoir River of Time: My Descent into Depression and How I Emerged with Hope. As a celebrity, she accessed the nation’s top psychiatric care centers, yet her pages tell of mostly failed interventions. While her death has been attributed to the “disease of mental illness,” her memoir reads like a saga of harm done in the name of help.

Among the array of treatments Judd documented in River of Time was electroconvulsive therapy (ECT). She was referred for ECT by Dr. Jerrold Rosenbaum, then-head of Massachusetts General’s Department of Psychiatry, after she hadn’t responded to antidepressants, which qualified her as having “treatment-resistant depression.” She writes that Rosenbaum, with whom she had a friendship, promised her that modern ECT was safe and effective, nothing like the film One Flew Over the Cuckoo’s Nest. This narrative, the one most frequently presented to the media and the public, seemed to overcome the singer’s initial reticence and fears of memory loss.

Unlike Fisher, Judd did not report a positive experience. After 24 sessions, she expressed doubts that the procedure was helping her, and quit. “About a month after the ECT treatments ended,” she wrote, “I could tell that I was slowly falling back into thoughts of suicide.”

Judd was one of thousands of Americans referred to ECT each year. While it was a male character receiving shock in One Flew Over the Cuckoo’s Nest, available data reveal a stark gender divide, both in the US and wherever else it’s administered. Today’s recipients are approximately two-thirds women, disproportionately between the ages of 60 and 65, and mostly white.

Proponents defend the statistics by pointing out that these demographics are more likely to seek and access care, and to receive a diagnosis of depression. University of East London psychology professor and ECT researcher John Read tells Mad in America, “Well, if that’s true, why are women more depressed? And how does electricity address those issues?”

New campaigns demand accountability

In the 1970s, protests against ECT gained some public attention. But since then, even while patient accounts have regularly told of harm done, their voices have been drowned out by the pro-ECT lobby.

ECT survivors and their allies have been calling for a ban for decades, even briefly achieving one in Berkeley, California in 1982. Their protests have featured a simple demand: “Stop shocking our mothers and grandmothers.” And today, 40 years later, the survivor literature is filled with accounts of permanent brain damage, erasure of identity-defining memories, loss of professional skills and livelihoods, and unrecognizable, ruined lives. Yet these voices have been largely silenced in the US.

Survivors like Disa Sacks, a New York physician who lost the ability to practice medicine after receiving ECT, are rarely heard in the public domain. She tells Mad in America of her experience undergoing the procedure in Florida: “It was done in your street clothes. Everyone’s lined up on these dirty gurneys, and then they wheel you into the ‘treatment room.’ They stick a piece of paper in your face with five emojis. ‘How do you feel today?’ You’re supposed to circle which emoji represents how you feel. That’s the extent of the assessment. And then they flip the switch on you.”

“I cannot believe my life,” she says. “I just can’t believe what’s happened to me. I can’t feel anything except anger.”

Protest sign, Coalition against Psychiatric Assault, 2017. Credit: Connie Neil.

“Anytime anyone gets upset or angry about what ECT has done to them, the psychiatrists and those listening blame it on their ‘mental illness,’” California-based survivor and activist Sarah Price Hancock tells Mad in America.

Critical researchers have been similarly smeared in the public sphere, accused of spreading “dangerous misinformation.”

“If you look at it from the psychiatrist’s benevolent perspective—that they are helping people for whom no other alternatives exist, then the psychiatrist will always win,” Hancock says. “Humans in general have this very high regard for physicians. That’s part and parcel for our culture.”

These longstanding cultural factors are among the many reasons that in 2019 Hancock began considering another strategy. “My father is an accountant and taught me, ‘If it’s not measured, it’s not valued.’ I needed to objectively look at numbers, to quantify the scope of the problem at every level, because data is the only thing that’s going to get people’s attention. So I started the #AuditECT campaign.”

She knew it would be a Herculean task to audit her own country with its patchwork, privatized healthcare system, writing in Mad in America in 2020: “It requires funding to submit a FOIA request to Medicare, State Medicaids, and all Private Insurances in every state.” The FDA had rejected her requests for data, as well as subsequent appeals. “Since we can’t get this information easily in America, let’s focus on quantifying where we can get data,” she says.

Hancock exchanged ideas with a leading group of survivors, researchers and campaigners in the UK: Drs. John Read, Lucy Johnstone, Sue Cunliffe, and Peter Kinderman. The group’s cause had just been bolstered by a 2019 study previously covered by Mad in America, authored by Read, Dr. Laura Marshall (Open University) and leading placebo expert Dr. Irving Kirsch (Harvard University).

The study, published in Ethical Human Psychology and Psychiatry, was the first to rate the quality of all existing randomized double-blind research on ECT. The researchers found only eleven placebo-controlled studies; the most recent dated to 1985. None came close to meeting modern methodological standards. “This body of research is of the lowest quality of any I have seen in my 40-year career,” Read said in a press release.

Especially troubling were the findings regarding women and elders, the primary recipients. For both populations, there was almost no evidence that ECT beat placebo in the short term, and no evidence of long-term benefit. The implications are especially grave, given that women and older people are also particularly susceptible to memory loss caused by the procedure.

The researchers also found no evidence that ECT was beneficial to the three groups of people it is primarily recommended for: severely depressed people, suicidal people, and those said to have “treatment-resistant” depression. Given the well-documented risks of harm, the study’s authors called for an immediate suspension of its use until randomized, double-blind placebo-controlled studies could be conducted using today’s scientific standards.

Shock survivor Dorothy Dundas, center, protesting in New York City. Credit: Dorothy Dundas.
Progress across the pond

The UK campaign gained further momentum in July 2020, when the Cumberlege inquiry made headlines, exposing massive systemic failures in the regulation of drugs and medical devices—particularly those prescribed to women, such as pelvic mesh. The inquiry’s findings felt familiar to those who’d been trying to expose ECT’s harms, and the campaigners saw an opportunity.

A group of 40 recipients, caregivers, professionals, and researchers launched a renewed phase of the campaign. Cunliffe and Johnstone explained the rationale: “Many years of disquiet and protest about ECT has failed to bring about change, but the recent Cumberlege review…suggests a mechanism for by-passing denial and vested interests, bringing unacceptable practice to light, and offering acknowledgement and redress to victims.” The group wrote to their MPs and all relevant government officials asking for an independent review of ECT.

Over the last three years, their work has achieved some results. A number of MPs signed on to a petition. Mind, the UK’s equivalent of the National Alliance on Mental Illness, endorsed the review. Media coverage followed, with a spotlight on ECT’s use on women; Read had filed a Freedom of Information request and discovered that in 2019, two-thirds of the UK’s recipients were women, and 36% were involuntary patients.

And last month, lawmakers on both sides of the aisle went on record in the media supporting a review. MP Nadia Whittome told The Independent, “The fact that it is being used at times on women in a vulnerable position without their consent is particularly alarming.”

Former shadow secretary of state for women and equalities MP Marsha de Cordova said she found the disproportionate use on women “deeply worrying” and was concerned that patients are not being “appropriately warned about the side effects.”

Read expresses cautious optimism about the progress so far: “It might take another year or two, but we might well get a proper independent government inquiry. I think we’re building towards that.”

Cunliffe, speaking about the campaign on the Medical Error Interviews podcast, explained: “If nothing else, at least if patients are being consented properly and they’re monitored for brain damage—if that’s all we achieve, that is a big achievement.”

“The hope is,” she continued, “that if we can really bring changes over in the UK, that it will then enable people from America, Canada, and other countries…to hold their governments accountable.”

“Why don’t we know those answers here?”

Naomi Judd, appearing on Good Morning America in 2016, said, “What I’ve been through is extreme. My final diagnosis was severe depression—treatment-resistant, because they tried me on every single thing they had in their arsenal.”

Her experiences may not have been as unusual as she imagined. At least one-third of Americans who access care for a depression diagnosis are classified as “treatment-resistant,” and some unknown percentage of them are being referred to ECT. Hancock reports that the number of US facilities offering the procedure jumped by 34% following the FDA’s 2018 decision to reclassify it as a Class II device for “treatment-resistance” in adults and children over age 13.

But in the US, there’s no clear national picture of how many people are undergoing the procedure each year, let alone the number of involuntary recipients. “They know those answers in England. Why don’t we know those answers here?” Hancock asks. “We can say how many appendectomies are given at every hospital. We can say the same for any treatment using general anesthesia. But we can’t track ECT?”

For her part, Sacks, the physician who was greatly harmed by the procedure, agrees with the UK campaigners’ goals, and hopes their results can bolster similar efforts in her country. “ECT needs to be banned—until or unless they do real, decent studies that show that it’s both safe and effective. Which they won’t be able to do, because it’s neither.”

 

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

65 COMMENTS

  1. In my May 25, 2022, article in MIA, “The Shady World of Shock Treatment,” I concluded the number of those suffering memory loss and other long-term undesirable effects from ECT remains unknown after 80+ years of use in the U.S. I am glad that there is finally movement to do something about it in the UK. The Federal Drug Administration (FDA) has warned that: “…The long-term safety and effectiveness of ECT treatment has not been demonstrated” (21 CFR 882.5940 (b)(1)(ix)(G)). Yet, when ECT Psychiatrists approach prospective patients they no doubt deny or minimize the unknown risks involved to keep the cash flowing. Otherwise, more would reject this unproven procedure. Without knowing the risks involved to agree to it is contrary to common sense. Why can’t the FDA insist that ECT at least be proven safe before it allows it to be used?

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    • @Dorothy:

      There are people who say it works for them. I am not very well-versed in the subject because I’ve never had to have it. I understand why people want it banned. But when other people say it works for them, an outright ban on it will be something that removes a modality that is helping some people right?

      The harmed should speak out. They should not be silenced. They should get some sort of respite from what has taken place to them. However, the other group should not either.

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      • I also think we should remember that Vioxx, for instance, did provide pain relief for a lot of people. It also killed a certain small percentage of them, far from a majority, actually a very small minority. It was taken off the market. Because it killed people. But some people found it very helpful. The FDA decided it wasn’t OK to risk people dying, even a small percentage, in exchange for pain relief.

        It isn’t always OK to allow a potentially unsafe intervention even if some people do fine on it, especially when you have no way to determine a head of time whom you might accidentally kill or whose life you may accidentally ruin.

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  3. I am most interested in this being re reviewed by modern scientific standards
    I had it for treatment resistant depression and psychotic depression and it was life transforming
    I had temporary slight loss of some words and a few teicial memory losses
    I now woek in mental health and have been well for 5 years
    I am happy fulfilled and intellectually undamaged
    It saved my life
    We need to work out even it can help
    When it tragically,doesn’t
    In UK it is dine in the NHS in hygienic conditions with much support from nurse,anaesthetist,and psychiatrist too
    I was very lucky to be forced to have it

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    • If it has worked for you, that’s great. But not everyone’s happy to be “forced to have it”. If they were forced into it (especially for the wrong reasons) and it destroyed their cognition permanently, they have every right to speak out against it, just like you do about how it has worked for you.

      I do not think ECT should be banned completely because of those like yourself who benefit from it (but that may be because I’ve never had to have it). I also talk to people every now and then who talk about how it has helped them.

      What would a “modern” scientific analysis be? A journal paper that shows that ECT works for some people so that you have evidence that it has worked for you and others like you? You and many others describe their positive experiences with it and that’s enough if you basically want to say: “Look, it has worked for many of us and you have to consider the opposite side too”. No “modern” scientific analysis necessary.

      Also, it is interesting that I come across so many people who have taken mental health treatments end up working in mental health again. I don’t see as many people with dental problems end up working in dentistry again, or people who’ve had infectious diseases work in that field.

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    • I’m asking this, not to mock or insult you. Just for information.

      The way you have written (because some bits are a bit oddly/incorrectly written), does it have to do with English not being your native language, being busy at work, using a phone, simply not caring about writing well because you think it’s a waste of time or does it have anything possibly to do with the lingering effects of the ECT you’ve had? This is an important bit of information.

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  4. I’m an advocate for mental health and the treatments that work for individuals — with consent. For me and many others with treatment-resistant depression that treatment is ect. I was well consulted and informed at the hospital where I made the decision to pursue that route, as were all of the others I knew who followed suit. I do not think anyone should be forced into anything without their consent, but, if ect is what I or my peers want and need, good lord don’t take it away.

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    • @Ruth:

      Could you also be an advocate for the following?

      i.) Not forcibly psychiatrically categorising people with DSM categorisations (or perhaps “diagnosing”) who don’t want it. It’s not necessary. A person’s problems can be stated for what they are.

      ii.) Stopping psychiatrists from further psychiatrically categorising people with terms like “bipolar disorder” for psychosis and mania caused by psychiatric drugs (whatever the initial problems they were prescribed for may be).

      iii.) Talking about how psychiatry and psychiatric categorisations often become a weapon of gaslighting and blackmail, and their negative impacts on people. Numerous examples can be seen on social media, in court cases etc.

      People advocate for “mental health”, for “people having access to life saving medication” etc., but never those things. I agree that people suffer from all manner of problems and I don’t want to take away people’s pills or any of that. But all mental health advocates talk about is the aforementioned and psychiatrists just keep giving speeches on systematic reviews and clinical trials but not the practical problems of people which are right under their noses.

      Those who are harmed are trampled on by the new batch of suffering people that will always crop up. There is no respite for the damaged and no accountability from the side of psychiatry. New cases, transfers, retirement and death become convenient escapes for psychiatrists from mistakes and having to undo any damages.

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    • I was not informed of the risks. In fact, the psychiatrist who did the ECT based on his recommendation told me that he had never had a patient who had experienced memory loss from ECT, and he was the doctor in charge of the ECT clinic at the hospital. He had been there for decades.

      After the ECT, I returned to my secretarial job and faced humiliation on a daily basis because I could no longer take down messages, remember procedures, or do the basics of my job. I would have conversations with people that I would then completely forget. I couldn’t tell anyone that I had undergone ECT, or that the doctor had diagnosed me afterward with borderline personality. I did go to the employee support center but I honestly don’t remember what they did besides laugh at me. I’ve been disabled for over a decade. ECT wasn’t the worst thing psychiatrists did to me, but it opened the door for a lot more abuse.

      No one is going to take ECT away. Let’s be real. Maybe you just don’t like hearing from people who were harmed by it?

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      • Thanks for your comment, Katel, and so sorry for your coercive, humiliating and damaging experiences at the hands of psychiatry. What you’ve described hits the nail on the head with ECT, as I see it. Those pushing it exaggerate it’s benefit and will not acknowledge its harm. They trot out their success stories, but if you or your loved one is damaged by it, they claim “it’s the illness”. Both with ECT and the drugs, it is appalling how most people in the “mental health” system are in denial of the clear adverse effects of psych meds and brain shock!

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  5. I find this article to be unfortunate and biased. ECT is 70 to 80 percent effective in alleviating severe depression resistant to medication. The suicide rate for major depression is nearly 10 percent. ECT saves lives. Not to say it works for everyone and some have cognitive effects. 98 percent of subjects in an australian study stated they would have it again. You are doing people no service with this article. Howard K Weiner MD

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    • Can you please provide evidence for your claims? It’s easy to say things without providing the actual backup. I’ve heard and read statistics that are WILDLY different from what you are claiming, so I need to see where you’re getting this info to put it into any kind of perspective.

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    • Perhaps my negative opinion stems from the tragic fact that the dearest 17-year-old girl in the bed opposite me died from the ECT we were being forced to have. It was barbaric and totally traumatizing. I understand that a few say they were helped. They were the lucky ones. Let’s remember that it kills brain cells and leaves many with lifelong brain injuries.

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    • Dr. Weiner,

      Can you tell me one thing you have done to help a person, not from depression, but from the negative effects ECT has had on them when they’re from the “it doesn’t work for everyone and they have cognitive effects” group? When there is life ruining damage, what do you do to compensate/help the person? Not saying you haven’t helped anyone like that. But how did you do it? How do people from your profession do it?

      I am not against people having ECT if it is helpful to them. But that is something that I want to know.

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    • Howard, from what I have personally observed and read, I am very skeptical of the oft-cited terms used within the psychiatric establishment, “treatment resistant depression”, “treatment-resistant psychosis, “treatment-resistant [you name it]”. First of all, there is no clear biological basis for any of these “illnesses” listed in the latest version of the ever-changing DSM. Secondly, rather than these things being caused by a “brain chemistry imbalance”, there is more robust evidence emerging that tinkering with people’s neurotransmitters CREATES a chemical imbalance. So at least in some, and I suspect many cases, what is called “treatment resistant [whatever]” may actually be “treatment EXACERBATED [whatever]”.

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      • I second that!

        One would think that the exposure of the truth about all of the psychopharmaceuticals that were touted as “safe and effective” when they were introduced (SSRIs, SNRIs, benzos, atypical antipsychotics and the like) — i.e. that they are neither safe nor effective, and they were marketed based on junk science like the “chemical imbalance” theory — that psychiatry would at the very least have the decency to do away with terms like “treatment resistant”.

        Psychiatry, your hubris is showing.

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    • It appears that you may perhaps have concealed conflicts of interest in that your affirmations appear to be without scientific grounding.
      My mother died of a brain hemorrage after ECT. And was severely disabled from the effects of the procedure.

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  6. ECT is one of many examples of how “psychiatry” qualifies as JUNK SCIENCE.

    Definition for Junk Science: untested or unproven theories presented as scientific fact; faulty scientific data and analysis used to advance special interests and hidden agendas

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    • Birdsong, I think psychiatry does see evil – in certain of their patients. The way psychiatrists speak of “borderlines” when they think no one except their colleagues are listening — quite chilling.
      Agreed that they don’t see evil in any of their treatments.

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  8. Anyone these days who takes psychiatry’s recommendations at face value must be living under a rock, as it’s become clear as day (thanks to the journalistic integrity of a brave few) that psychiatry’s endorsements need to be taken with a large grain of salt.

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  9. Dear Author,
    Every suicide is shocking and we psychiatrist are very sorry about those events but nothing always work in medicine treatments.
    The cited paper by Read J was quite controversial and flawed by many biases; John Read is a psychologist and not a MD and the Journal where he published accepted many antipsychiatric papers.
    What is real interesting is that there are many positive experience following Leah Harris criticism on this antipsychiatric site.
    Two statements:
    – ECT is effective and safe
    – Antipsychiatric movement is very dangerous: 7 days ago a paranoic patient, supported in symposia by antipsychiatric psychiatrists, killed a Colleague of mine in Italy.
    Psychiatry is not perfect. Medicine is not perfect.
    Psychiatric syndromes exist and patients suffer a lot.
    Every psychiatrist struggles against patients’ suffering trying to help them with every possible tool; from psychotherapy to ECT, the whole “arsenal” should be considered to help our patients.
    Please stop increasing the hate against psychiatrist and psychiatry.
    It will not help the patients at all.
    Regards

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    • Again, I think you are confusing efforts to help with effectiveness. Stating things like “ECT is effective and safe” is just as dangerous or moreso than saying, “ECT can have serious adverse effects which should be considered before undertaking such a course of action.” Are you seriously claiming that there are NO or MINIMAL adverse reactions to “ECT” despite all of the hard and soft data showing that the results for some people are devastating? You do realize that “ECT” is the intentional induction of a convulsive seizure (hence the name) and that under normal circumstances, such seizures are considered dangerous and people take drugs to avoid them because of potential brain damage? Why would an intentionally induced seizure NOT be likely to produce brain damage when a spontaneous one IS likely to produce such damage?

      My beef with psychiatry is mostly the blithe dismissal of very real concerns that exist, as you demonstrate in your comment. It is not HATEFUL toward psychiatry to report on actual events and studies that challenge the conventional wisdom. “Trust me” is a dangerous comment for ANY physician to make, but more particularly those working in psychiatry, where knowledge is scarce and speculative on the ground and no one really understands the exact cause of ANY “disorder,” or even if such a “disorder” syndrome is a legitimate entity for study rather than a broad collection of phenomena which have been cast together into a syndrome because we don’t understand them, purporting to “know all about it” is just a blatant deception.

      Psychiatry would be a lot better off as a medical specialty if it took a big dose of humility and started to understand that these bad results are very often NOT random or made up or the result of “lifestyle issues,” but are very real and potentially dangerous side effects of the “treatments” they are handing out. That way, at least some measure of “informed consent” can be practiced, rather than providing bland and scientifically empty reassurances such as “ECT is safe and effective.”

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    • “Antipsychiatry is dangerous”. The whole point it even exists is because of the damage your profession has done to other people’s lives. That is something you fail to consider.

      Also, the paranoid person who killed your colleague. Did he kill him out of paranoia or revenge against psychiatry for what it did to his life? You will take one example to brush people here with “antipsychiatry is dangerous”, but in the same way, one negative experience on our side becomes “anecdotal evidence”.

      You’re bothered by the death of your colleague because you’re a psychiatrist and it instills a hint of mortal fear in you that it could happen to you one day but not about the destroyed lives of many of the people who post here on these “big bad antipsychiatry” sites. Death is a lot better than the sort of ruination that comes from psychiatry (ranging from gaslighting, character assassination to physical disability). You do not have to face that. You face the problems that people come to you with, not those that people leave with or get stuck in.

      You want people to stop hating psychiatry and psychiatrists. Then start by acknowleding things like the damaging nature of psychiatric categorisations on people’s lives and characters, the practice of categorising people with further psychiatric categorisations for adverse reactions from psychiatric medication, the fact that sometimes abusive individuals use psychiatry as a tool of blackmail and gaslighting against their victims, the patient stories here etc.

      There is no initiative on your end, but you want people to stop despising your profession. Fat chance.

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    • Also, I don’t understand why Dr. Cattaneo has to explain to any of us here that people suffer from problems?

      I, and many others here, know people suffer from problems like depression, anxiety, intrusive thoughts, panic attacks, hallucinations, delusions, manic episodes, alcohol and drug abuse, family problems, sexual abuse and all kinds of odd problems which others find hard to understand. We don’t need to be convinced of the reality of suffering

      Talking about “the whole arsenal of treatments” i.e. pills (SSRIs, SNRIs, mood stabilisers, neuroleptics, benzodiazapenes etc.), listening and talking (CBT, DBT etc.), mindfulness, ECT/TMS…..all of this stuff which we already know exists, is pointless.

      It is what mental health workers have done to the suffering in the name of treatments and the problems they have caused them due to which people end up on sites like MIA. To reverse it around and act like a hero is astonishing. The people here who have written 1000s of articles cumulatively and have experienced decades of “psychiatric help” aren’t some 3-year old kids.

      Many mental health workers will attend some symposium about systematic reviews, changing DSM classifications etc., but the problems of the people on the ground (not the problems people come to you with but the ones they leave with from the way you help them) are not something you will consider worth your time. These things are probably for those little sideline speeches mental health workers might give with a title like “From Szasz to MadinAmerica: Past and Contemporary Critiques of Psychiatry”.

      As far as patients in psychiatry, some of them and their families are as (sometimes even more) awful as mental health workers because of how indoctrinated they get with psychiatric ideology. It is one thing to appreciate a human being, be it a psychiatrist or anyone else, for helping them. But some patients and families view psychiatrists as quasi-gods and help keep other patients “in-check”. Sorry, but that’s not happening here.

      Some guy who’s been depressed for 20 years with no solution and suddenly feels joyful from a nice, comforting pep-talk and some Sertraline you prescribe and raves about how great you psychiatry guys are doesn’t disqualify the experiences that people write about here. Even that guy down the line might change his views as a result of more experiences and then join the “big bad antipsychiatry group”.

      There are many many factors that go into why a person likes or dislikes psychiatry. And that like can turn to dislike pretty quick.

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    • All medical procedures have risks. Please reply with a peer reviewed article assessing the risk and benefits of ECT. Read and co did just that. If you cannot respond with statistics based on evidence then your response should be ignored by all those interested in forwarding science and the care of the severely distressed.

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      • The people who experience severe distress after undergoing ECT don’t need to read any “peer reviewed article” for evidence to know what caused their severe distress. So for them, the most reliable evidence IS THE STATISTIC OF ONE.

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  10. NOTICED visibly no before & after improvements for a Patient named Alan detained to ( SAXON WARD ) & brought minutes later from ( TAYLOR WARD ) electro shock room at NHS Pennine Care Foundation TRUST located in the town of ASHTON UNDER LYNE in the city of Manchester . UK . What I saw was a Patient rolling around on the laminated floor unable to speak near to the entry / exit door of the dining room / visitors room at SAXON WARD Staff looked at the Patient & said ” Your a grown Man get up of the floor ” THOUGH . the issues were the Staff seemed very uneducated about the consequences of electro shock & for some of these Staff are ( ONLY following orders ) what I also observed is a Man with loss of weight almost skeletal with degraded clothing & footwear in a NHS psychiatric ward costing at least ( £ 3003 . One Patient . One Week ) with no value for money & no genuine health care with no obvious results . All I was able to do was TRY & help first of all with issues of being electro shocked into a stupor where there was no emotion & no answer to questions . This was achievable with gradual two way conversation though when I stopped the Patient name of Alan then reverted into being frozen faced with lacking conversation . The Patient also TRIED to provide for self care with struggling to complete crossword puzzles & word search books . HOWEVER . it was a very difficult & pitiful sight . Staff ( ONLY following orders ) would often ignore Patient distress when seeing this with their own eyes & hearing the tragedies .

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  11. Thank you for this very well written article, Leah. I am glad to see the discussion, pro and con, especially from people on both sides of this issue who have “skin in the game”. I too have skin in the game, and it’s on the very negative side. My older daughter was alternately sweet talked or pressured and even threatened with ECT for “refractory mania” in two different psychiatric hospitalizations. In one of those, they almost killed her near the beginning with NMS (neuroleptic malignant syndrome) because of hitting her hard with a medication she’d never had before, Haldol, and then they exacerbated her mania by insisting on pushing ahead with Risperdal, to which she had previously had a paradoxical reaction (activating)–and we, her parents, informed them of that. They said that ECT was “the only thing left”, but both times she recovered fully without it; in the first instance, after they finally discontinued the Risperdal; in the second, it seems the mania just ran its course and subsided.

    With my younger daughter, the story did not have such a “happy ending” (not to minimize my older daughter’s trauma). Her story was published here at MIA on the first anniversary of her death, and here’s the link if you care to read it:
    https://www.madinamerica.com/2022/07/catherines-story-a-child-lost-to-psychiatry/
    She had ECT without her consent or ours (her parents) through a very duplicitous, coercive kangaroo court process. We saw no benefit from it whatsoever, and it was very traumatic and damaging to her relationship with and trust of us.

    I also have a friend in his 60s who’s been in the mental health system since his teens. He got in a very bad way about 10 years ago and ended up having several courses of ECT–I’m not sure if it was completely involuntary, but if there was consent I seriously doubt that it was informed consent. Initially he did come back to a much more functional state, but after the last course he literally lost memory of about 5 years of his life.

    I am very glad to see from this article that the downside of ECT is being seriously looked at in the UK. Despite the very bad experiences with my own daughters, I do not believe it should be banned. The reason for that is because of people like those who have commented above. I cannot substitute my judgment for those who say they went into it with their eyes open and it was life-saving for them.

    But I do think involuntary ECT should be banned, and that it should only be done with truly fully informed consent, which I believe is not usually the case. And I also agree that it should be subjected to much more rigorous and careful study, and used much more sparingly, even with informed consent. While according to this article 36% of ECT in the UK is done without consent, if that were expanded to “without informed consent” I believe the percentage would be much higher.

    Thanks again for this article, Leah, and the many other good ones you’ve written. I believe the picture you included is from that “Occupy the APA”/”Free Justina” rally in New York City that we both attended back in 2014, correct? It would be nice to hear from you again, if you have the time and inclination. We need to have a “big tent” in this movement, don’t you think?

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  12. Worth adding that the shadow Minister for Mental Health, Dr Rosena Allin Khan, has asked 2 questions in the UK Houses of Parliament about the regulation – or lack of – of ECT: https://questions-statements.parliament.uk/written-questions?SearchTerm=electroconvulsive+&DateFrom=19%2F12%2F2019&DateTo=31%2F03%2F2021&AnsweredFrom=&AnsweredTo=&House=Commons&MemberId=4573&Answered=Any&Expanded=True
    We have 25 MPs from across the political spectrum supporting our call for tighter regulation. The Care Quality Commission, which inspects all hospitals in England, did not routinely include ECT in its visits until our campaign forced them to change this. The Green Party as well as the Labour Party are actively aware of and concerned about this issue.

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  13. We have collectively authored a large number of publications showing, for example, that the (minimal) practice standards for ECT are routinely ignored, and that ECT usage varies 47-fold in different parts of England – not something you would expect from an evidence-based practice. Sue Cunliffe has negotiated directly with the former President of the Royal College of Psychiatrists to enhance practice standards. We have exposed the fact that it is legal in the UK for ECT clinics to operate without even being a member of the relevant accreditation body – in other words, anything at all could be happening. We have named and shamed some of these clinics, which are now accredited. However, the situation remains dire, and we have encountered a massive backlash, including vicious social media attacks on harmed patients. Calling for proper evidence and better regulation is a strategy which makes our campaign message acceptable whatever your stance on ECT. Surely even supporters want it to be used safely? However, it is our belief that an unbiased look at the evidence will show (as Read and Bentall’s 2019 review suggested) that the harms massively outweigh the benefits.

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  15. As an elderly woman and one who experienced electroshock as a young woman just 3 days after childbirth with years of hindsight, I can tell you that electroshock does cause serious harm. People talk about evidence but do we talk about common sense? Is it common sense to damage the most complicated organ ever created to make it better? Is it common sense for doctors to try to prevent seizures for some to cause them for others? Is it common sense to use mind-altering drugs with many sessions of electroshock? Anyone who has seen a person unfortunate enough to experience even one grand mal seizure would not want to have another. Seizures can kill.
    Then we all know that so-called evidence can be created by those who have a vested interest in the business of electroshock. These people have much more power in the countries where electroshock is available. Why are elderly women the targets of this type of iatrogenic harm? Many if not all of them could have been on psychotropic drugs for years. When people are under the influence of mind-altering drugs it is impossible to make an informed decision. I know what it is like to be out of control on prescription drugs. I was spellbound then and could have said that black was white!!
    In Ireland, the two private Dublin psychiatric institutions in the entire country provide the most electroshock for its citizens. Cork is the second biggest city and thankfully very few people have received it in our rebel county. MindFreedom Ireland was founded in Cork in 2003. This year is our 20th anniversary In 2007 we had our first shock protest with the heading ‘Stop Shocking Our Mothers and Grandmothers’. We were inspired by the Coalition Against Psychiatric Assault and with them and others have had electroshock protests ever since. Jim and I while on a holiday to Canada proudly took our place with many other survivors of electroshock. The protests gave us an opportunity to talk to some of the public on the streets of Cork. The common response was one of surprise that this barbaric ‘treatment’ is still practised in Irish psychiatric institutions. Some politicians have supported us and we helped to have the subjects debated by a government group called the Seanead in Dublin.
    This year, on Sunday, May 28th our electroshock protest will take place in Dublin outside the General Post Office a place where many people died fighting for Irish freedom in 1916.
    When speaking about the work done on the other side of the pond we would like if our work from a small country with a small population was also recognised.
    http://www.mindfreedomireland.com

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  17. I witnessed first-hand, and with helplessness, my sister being coerced into ECT by her doctor and husband.
    She was very depressed, in a MH facility (for the first time in her life) and had not even completed a single course of antidepressants.
    Yes, she “consented” – but in her state, and with the pressure being placed on her, what choice did she have.
    She was reassured again and again that ECT was necessary, safe, and her path back to normal life.
    She had faced a very stressful period in her life, and needed time to recover.
    Up until that point, she had led a very successful and happy life – professionally and privately.
    Instead of time, she was pressured into the “quick-fix” of ECT.
    She committed suicide a month later.

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  18. MIA readers commented both “pro” and “con” on ECT. How many would fall in each category would be hard to say for the population at large scientific survey data. Yet this still does not exist despite ECT being in use for over 80-years in the United States and the many who complained.
    The only large study I know of that speaks at al to the question was conducted by the FDA in conjunction with the re-classification of ECT in 2011 (“Executive Summary, Prepared for the January 27-28, 2011, Meeting of the Neurological Devices Panel to Discuss the Classification of Electroshock/ECT Devices”). I downloaded the FDA’s Executive Committee report years ago, but it is no longer available on-line.
    Included were public comments on the re-classification of ECT devices, then classified as high-risk to a lower risk medical device, which would make it more available. Responses totaled 3,045. The majority expressed an opinion against re-classification and mentioned an adverse event following ECT. The most common adverse event was memory loss (529 reports), followed by other cognitive complaints (413), brain damage (298 reports), and death (103 reports). The FDA, however, did not consider the public response in its determination because it did not represent a random sample. You might think that such a large negative response would prompt a scientific survey study of ECT survivors. But it did not.
    It is not only the lack of good data on the number reporting adverse outcomes that have led to questions about the wisdom of FDA’s final decision to lower the risk classification of ECT devices, but several outstanding issues. In my MIA article, “The Shady World of Shock Treatment” (May 24, 2022), I discuss the lack of consensus among Advisory Committee members, the lack of transparency in the FDA final report (“Neurological Devices: Reclassification of Electroconvulsive Therapy Devices,” Food and Drug Administration, Dec. 26, 2018), and suspicions of the undue influence of the Shock Industry.
    It would be in the best interest of the public to reconsider the FDA’s decision as soon as possible. I am glad that efforts in the UK are now in progress.

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