Electroconvulsive therapy (ECT): It’s Not Just the Memory Loss

Most people are aware that ECT causes memory problems; since 2018 it has been literally written on the ECT machine itself following FDA concerns. Our own survey found that most ECT recipients and their relatives reported memory loss. But do recipients report any other adverse effects from ECT? Little was known, as previous studies were mostly miniature (e.g. 11 of the 16 studies to date involved 20 or fewer people). To address this, our study (recently published) reports the experiences for the first time of nearly a thousand ECT recipients and their families, from 37 countries.

It turns out that wider adverse events are not rare; in fact, each of the 25 adverse effects we asked about met the “10%-of-people-get-it” criterion used by the European Medicines agency to classify side effects as “very common.” For each adverse effect the people with more severe problems had received more ECT (called a “dose response”, which usually indicates a causal link). Relatives and friends largely agreed with the patient’s own reports, so this cannot be dismissed as a sign of patients’ “mental illness” or bias.

The seven most frequently reported adverse effects were: Losing train of thought (87%), difficulty concentrating (86%), fatigue (80%), difficulty reading (78%), emotional blunting (76%), difficulty navigating (73%) and loss of vocabulary (72%). It is important to know that recipients were asked “Did you experience any of the following as a result of ECT, and if so how severe were they?” (with four options, “not at all,” “mild,” “moderate” and “severe”). After this, “Did you have any other side effects as a result of your ECT?” (where they could write their own text). So while it is true that most of these symptoms can often be found to some degree in depression or from psychiatric medication use, these recipients’ experiences of causality are that these adverse effects were much worse after ECT.

Do these symptoms say “head injury” to you? I worked (briefly) in a head injury unit, and they do to me. Difficulty navigating and loss of vocabulary are not at all common in depression, and losing train of thought is certainly not something that 87% of people with depression would endorse. From the seven problems, only two (fatigue and concentration problems) are in the diagnostic criteria for depression, but even these two symptoms are probably more central in head injury cases than they are to depression.

More than half of our respondents reported a further 10 of the 25 adverse effects we asked about. These included problems with day-to-day activities such as (difficulties) cooking, driving, using money or using a computer. There’s no reason depression alone would make it hard for someone to cook or drive. Loss of independence was endorsed by 67% (not surprising if they can no longer do important activities of daily living). Most poignantly, “Loss of job” (55%); these people’s experience was that ECT and the problems it caused them cost them their jobs.

There are further adverse events that 37-54% of people experienced, which seem to speak to a physical deterioration or impaired coordination: headaches, sensitivity to light, shaky hands, walking into things, falling over, slurred speech. These are not symptoms of depression. In my opinion, these may have more in common with injury to deeper brain structures like the basal ganglia or cerebellum (which controls physical motor abilities), like in Parkinson’s disease, or Alzheimer’s, although I am not a qualified neuropsychologist.

The rarest side-effects were also the scariest (and the most compelling argument against ECT): 23% of people reported ongoing heart problems—that’s nearly one in four—and 16% reported seizures or convulsions (beyond the ECT period). The official incidence in the literature for heart problems is 2.6% (or 6.7% depending on who you believe), but those ratings were made by the psychiatrists themselves, not the patients. Twenty-three percent is a hugely significant rate of dangerous adverse effects, and it is worth bearing in mind that ECT is a treatment which patients report doesn’t work for most (70-80%) people (and only 6-9% felt ECT helped for longer than a month or two).

What might surprise you is that researchers (and, apparently journal editors and reviewers) are in the habit of dismissing such significant rates of catastrophic injury as acceptable. In no other branch of medicine would such a debacle be allowed. You may be further surprised to read that most official information sheets for people considering ECT in the UK (usually based on the current Royal College of Psychiatrists’ information sheet) do not even mention heart problems or seizures. No one is told about potential cardiac events or ongoing seizures before they have ECT. They also aren’t warned about nearly all the other adverse events, like difficulty functioning or concentrating or walking into things; in fact, the only adverse effect mentioned is memory problems, described as affecting “a small number of patients.”

If you have just read the official RCP information sheet, you are probably reeling from the completely different picture painted of ECT there. You may be thinking “ECT has been used for getting on for 100 years; how can it possibly have such adverse events? Is it at all likely that psychiatrists would have carried on anyway, despite widespread reports of ex-patients reporting seizures and heart problems (160 or so people in our study). But patients haven’t been properly asked before, and still haven’t really been properly assessed; even our study is just a cross-sectional survey with some sampling issues, and not a randomised controlled trial.

You will notice this in future debate stimulated by our paper, which is likely to generate a lot of media attention, as previous ones have. Good journalists like to give a balanced position, so will include views of people who support ECT. Their arguments will seem to be answering a different question: “Does anyone feel they benefited from ECT?” To illustrate this, they will give one or two examples of people who speak positively about ECT. But pro-ECT psychiatrists can’t answer questions about what long term impairments and adversities ECT causes because they don’t have any data. Because they haven’t asked. The best they can say is “no one has complained to me”—which reflects that ECT is a specialist silo, and the people who give it generally have no input beyond the treatment period.

In NHS trusts I have worked in, ECT is a two-day-a-week part of a job that tended to be taken by exhausted psychiatrists who might otherwise retire, having had enough of the horror of NHS community (severe) mental health teams, and the never-ending overwork of unsolvable social problems. (Our survey also showed that weirdly, ECT psychiatrists are usually male, while ECT recipients are predominantly female). Patients are referred to them for a course of ECT and they deliver it the same way the doctor at the “clozapine clinic” takes blood; affably, but mechanically, with limited obligation to listen to or fully assess the patient. After all, that is the responsibility of the referring teams and psychiatrists.

The whole point of the ECT job is that you just do it, and don’t have to get involved with the person or the reasons they are depressed in the first place. Whether it works or not is someone else’s problem, although you want to produce some token outcome data to prove the clinic is needed, so you don’t lose your perk. (Ideally as brief and general as possible, rated by yourself.) Referring clinicians get the relief of at least “doing something” with a difficult client, so the pressure to help is relieved for a month or three. The literature for ECT is dense and boring and clinicians understandably haven’t got the time or energy to pore over it; instead, they are happy to be reassured by the few self-proclaimed experts in ECT—who are still chanting the mantra “ECT is safe and effective, it works for most people without serious side-effects”—which, as I have written about elsewhere, is based on nothing other than wishful thinking, according to national independent research-evaluation bodies such as NICE and FDA and Cochrane.

The outcry from recipients in our survey has persuaded nearly every national newspaper in the UK to report on the problems with ECT recently, reflecting that the general public are rightly concerned. We have also raised our concerns with every UK body that conceivably might protect the public: the Care Quality Commission, NICE, and the government have all told us (I paraphrase) “It isn’t really our remit,” and “We defer to the Royal College of Psychiatrists’ ECT special interest group ‘ECTAS’ (a voluntary accreditation system).” Pro-ECT people, it seems, are not answerable to anyone, least of all the public and patients.

Bear in mind that the World Health Organisation and the United Nations stated in 2023: “People being offered ECT should be made aware of all its risks and potential short- and long-term harmful effects, such as memory loss and brain damage.” Nope, just not happening.

In that case, what evidence would pro-ECT people need to see to disconfirm their own position that ECT is a safe and effective treatment? For instance, would they reconsider the idea that provoking seizures repeatedly is good for someone’s brain’s health (which is how ECT is supposed to “work”) if perhaps the American Journal of Neuroradiology published an editorial subtitled “Seizures are bad for your brain’s health,” noting “A number of experimental animal and clinical studies imaging studies confirm the idea that seizures by themselves cause brain damage”? Or would it give them pause for thought if a government enquiry into medical scandals (1.18) was scathing about “an institutional and professional resistance to changing practice even in the face of mounting safety concerns. There can be a culture of dismissive and arrogant attitudes that only serve to intimidate and confuse”?

My guess is that psychiatrists will not voluntarily reconsider, so ECT is here to stay—no matter how many ex-patients or other colleagues protest. (Unless perhaps there is some sort of huge lawsuit.)