Editorial Note: This post interrupts the Crusoe series.
The comments from Deirdre Oliver and “Truth” posted below assume Crusoe and I are one and in attacking me they risk derailing a position being laid out by Dr Crusoe. Dr Crusoe and I share some views or her posts would not feature here but while the issues about ECT have some relationship with the position she was staking out about drug regulation it seems better to separate out the attacks on me from the wider debate.
Anyone who wants to engage more fully should ideally read the attached chapters from the History of Shock Treatment – The Swinging Pendulum, A New Chapter? & Irrational Science. It is worth visiting Let Them Eat Prozac The Shock Controversy, where saving some items that might have been embarrassing to those attacking me, things that have come up before are posted. Also worth reading are Better to Die RxISKing it One and Two – the text of an address to ISEPP in Los Angeles last November. This talk was going to be posted by ISEPP – it is close in content to a talk given recently in Yale that has been posted.
So this post is responding to some of the comments that seem to come after it.
I am as constant as the Nothern Star
Caesar’s words that sealed his assassination – or words from Joni Mitchell. Take your pick.
The initial charge from Deirdre Oliver – see below – accused me of lacking consistency. She and many anti-ECT activists find it bewildering that I don’t call for ECT to be banned. It seems inconsistent to them to campaign against the toxic effects of drugs and not to call for ECT to be banned.
I have never called for a treatment to be banned – not SSRIs, not antipsychotics, not benzodiazepines, not psychosurgery and not any of the therapies that have been linked to a recovery of memories of abuse that never happened. My beef has been to get the hazards of treatment, whatever they are from whatever branch of medicine, put on the map so people can be better placed to decide whether or not to take the risks involved or to work out what has happened to them should treatment go wrong.
Getting to grips with the hazards should leave people better placed to decide if the primary problem was bad luck, a negligent therapist, or a systematic cover-up by an industry or other group promoting a treatment in a misleading way.
The cover up
Having gone into the background research, probably more than anyone else on earth, on what companies knew about the hazards of their drugs, and what those linked to ECT knew about the hazards of ECT, my view is that companies unquestionably engaged in and likely still engage in negligent and sometimes perhaps even fraudulent behavior when it comes to the hazards of drugs. Because drug treatments within mental health are used somewhere between 10,000 and 100,000 times more commonly than ECT, the consequences of this company behavior are far more devastating than any ECT cover-up could be – were there a cover-up.
I seem to be able to spot a cover up where others can’t. AllTrials for instance looks to me something that suits industry all too well. But there is no ECT cover-up that I can find.
Those who defend ECT can be wary and defensive. This is not surprising in the face of implacable hostility, and little support from the rest of medicine. Yet the person who most clearly put on the map the idea that ECT involves an organic insult was Max Fink, the person most excoriated by the critics of ECT. It has been very difficult to get clear-cut test evidence of enduring cognitive dysfunction on ECT; one of the few bits there is comes from Max Fink. D.O. below cites Charlie Kellner raising the possibility that the next generation of scanners may reveal harms on ECT. Kellner has been the editor of Convulsive Therapy, the lead investigator on the CORE ECT studies, and one of the major figures behind ECT. The fact that he thinks some scans might show something suggests an openness to the data here just not found among drug company apologists.
When I wrote a celebration of activist movements in ECT’s history (The Swinging Pendulum – above), and the efforts to use abuses linked to ECT to promote informed consent across all of medicine, I got a lot of my leads from Max Fink. When I supported the publication of Linda Andre’s Doctors of Deception (see comments), some of those concerned for the treatment weren’t enthusiastic because unlike D.O below they didn’t think it was meticulously researched, but no-one vilified me or ostracized me.
The research evidence
The critics cite evidence of brain damage in a paper by Hartelius and memory dysfunction in a paper by Janis – both dating back to the 1950s – or they invoke brain scans. The Hartelius’ study comes up again and again and came up a short while back in a set of exchanges on the Critical Psychiatry website between Barney Carroll and the CP network that more than fulfilled the English definition of fair play – at least 11 against 1 (as in cricket). Peter Breggin weighed in with the Hartelius paper. Carroll provided an analysis of this – attached here. This is a must read. Exchanges like this lead to silence on the CP site or to someone like Barney Carroll simply not having their contribution posted.
None of this is to say there isn’t brain damage on ECT. Poisons, poison. Mutilation, mutilates. And a convulsion is never a good thing. Some generation of scanner or other tests will reveal damage linked to ECT. But the same scanners will reveal as much or more damage linked to antipsychotics and antidepressants. What then?
In the meantime having worked with a variety of colleagues on scanning and cognitive testing protocols in an attempt to elucidate the harms ECT causes, I can report that with the best will in the world it isn’t easy to draw up a protocol that gets to where the critics seem to want to get. Their response is that the failure to come up with results that nails ECT points to a cover-up but what is being missed is that current scanners are pretty useless for anything fine-grained and cognitive function testing is little better.
ECT is linked to autobiographical memory problems – but so are the benzodiazepines. It’s easy to demonstrate this for the benzodiazepines but far more difficult in the case of ECT. There is nothing distinctive that ECT causes that drug treatments don’t cause in spades and no-one who gets ECT doesn’t get drugs also.
In terms of the severity of the conditions it treats, from resistant Parkinson’s disease, through Neuroleptic Malignant Syndrome and catatonia to psychotic depression, the benefit-risk ratio may be better for ECT than for anything else in psychiatry – when used for those conditions. This doesn’t mean it doesn’t cause problems. Unnecessary convulsions are never good.
Led the wrong way?
This brings us to legal actions. On the drug side, the actions that I have been involved in have never been against doctors. They have been directed at companies. These actions have brought a huge amount of material about the sequestration of trial data, ghostwriting of articles and public relations sponsored harassment of people trying to raise the hazards of treatment into the public domain. When juries have convicted in cases of birth defects, or suicide or dependence linked to antidepressants, it has been on the question of whether companies had good cause to warn and failed to do so. It has not been about getting treatments banned.
I have found it difficult to be party to legal actions against doctors in circumstances where drug treatments have been involved as it has seemed to me difficult to hold them responsible for the air they breathe. It is not unreasonable for them to depend on the literature that appears in respectable journals like BMJ and NEJM, although we may be nearing a point when juries decide otherwise.
A possibly even greater problem in medicine that RxISK.org seeks to address is the often abusive treatment that many of us receive that is made possible by a power-imbalance between doctors and the rest of us.
If not broken, the mental health system is wobbling badly, and there are an increasing number of people trapped within it, the learning disabled, the elderly and anyone who has an adverse response to a drug, who are at increasing risk of being treated for the consequences of prior treatment, and whose lives are being blighted and shortened as a result. I’ve been writing about this for nearly two decades – see Foreword: Dying for a Cure – and spent a good deal of the last two years working on a way to formulate the issues that might provide a platform for anyone having unnecessary treatment inflicted on them whether ECT or drugs, in community or inpatient settings, to escape from under the juggernaut.
How do we tackle being powered out? This happens across medicine – its not just a mental health issue but mental health activists are more aware of the issues than anyone else. Diverting them into calls for getting treatments banned is a great way to prevent them bringing a revolution in all of healthcare. Success in getting ECT banned might also be a good way to make a market for the next pro-convulsant treatment – Ketamine analogues.
Having at one point researched most of the major ECT legal cases for The Swinging Pendulum chapter above, the difference between ECT and pharmaceutical cases is striking. The ECT cases should be about medical negligence but time and again plaintiffs have ended up with experts on a mission to get ECT banned completely, when it might have been better to seek out an expert who concedes that ECT may be helpful but in their case was used abusively. And the plaintiffs have lost.
The call to ban ECT is linked to ideas that mental illness doesn’t exist – and indeed that disease doesn’t exist given the benefits ECT can produce in NMS and Parkinson’s disease. There is a romance to the idea that disease doesn’t exist but ninety-nine percent of the population just ain’t going to go there.
Romance might sound pejorative. I was going to say ethical nobility. When anesthesia was developed in the nineteenth century, it led some, who could not accept the idea of benefiting the many at the expense of the few, to agonies. There was an ethical nobility to such agonies in 1860, but most of us would regard their rehearsal now as romantic. Some of us split the difference and regard the bargain medicine has made as Faustian, but when it comes to the crunch of cancer or the maelstrom of melancholia we take the bargain and opt for anesthesia or ECT.
See Sherwin Nuland’s extraordinary TED talk on ECT. But for every Nuland who gets the call right, the Devil probably wins in having ECT inflicted on someone who shouldn’t have it – but s/he wins even more comfortably when it comes to drugs.
At the end of the day, I don’t see it as my role to decide for anyone what treatments they should or shouldn’t have. The message that the benefits you can get from me are linked to poisons, mutilations and shocks would reduce the use of all treatments across medicine, however anyone thinks they help, but they would still be given by some doctors to more than those who stand to benefit, or be demanded by some who don’t figure on meeting Dirty Harry.
The resistance to the message that medicines are poisons is not confined to mental health. Delivered at a recent event at the Hay-on-Wye HowTheLightGetsIn Festival, the message was not well received but it’s difficult in any other area of medicine to imagine hostility of the type that the critics of ECT mount, unless orchestrated by the pharmaceutical industry.
ECT is the most disputed treatment in all of medicine. This hostility was once actively fed by Pharma with adverts for chlorpromazine and other psychotropic drugs portraying a switch to their medicine as a way to eliminate Cuckoo Nest scenarios. Pharma have done some brilliant things in the mental health domain. One was their linking of concerns about the risks of suicide on SSRIs to Scientology. This was doctor Rope-a-Doping. The same has been done to ECT. From the 1960s onwards Pharma influence has made it steadily more difficult and its now close to impossible to get symposia on ECT into APA or other mainstream psychiatry meetings – this is activist Rope-a-Doping.
A true story
In one of the comments below, Johanna Ryan notes the mystique ECT has among some doctors. I’ve never really noticed it. It’s difficult to believe any doctors see ECT as anything other than Shocking. It would be great if they saw drugs as poisons in the same way. Some say they’d have ECT themselves if they ever became melancholic but an increasing number of them have never used it or seen it used. The only person recorded as seeing ECT as anything other than shocking was Ken Kesey, the author of One Flew over the Cuckoo’s Nest, who rigged an apparatus up in his garage thinking it might offer something similar to an LSD trip.
But ECT is iconic in other ways. Clint Eastwood’s movie The Changeling opens with the line – This is a True Story. Not based on a True Story but an actual True Story. The Changeling portrays the horrors of psychiatry as they have been since One Flew over the Cuckoo’s Nest – through involuntary ECT, The problem is the heroine’s incarceration happened 10 years before ECT was invented. There is something about ECT that all but compels people to use it as a symbol of the horrors of mental health systems. There is something about health which means we ignore where the real problems are coming from when ECT and anything else is used.
The people most likely to profit out of Dirty Harry turning into a pussycat or talking to an empty chair are Lilly, GSK and Pfizer. Sorting out the honchos who make the treatments that cause the most damage would take care of the problems linked to ECT en passant, but we’ll be a long time waiting for Harry to tell a drug company executive to make his day.
Meanwhile in another part of town….