Simon Wessely: ‘ECT is in my own advance directive’

Inara said:
ECT is called electroshocks coloquially. To be very honest I am a bit shocked that electroshocks seem to be ok for some here. If people choose them voluntarily after they were informed about the mechanism, chances and risks - ok. People are free to choose. Unless, of course, they're incapacitated. Which, I think, will often be the case in these situations.
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I agree that, particularly in the past, ECT may have been used when it should not and with crude techniques. But surely whether or not we consider a treatment OK must be based on its true medical value and for ECT that is well established. I would say that people who receive ECT in the UK are not just incapacitated. They are not actually there. When my wife was ill I discovered what was meant by 'losing your mind'. My wife's body was not occupied by her but by a strange robot-like creature I have never met. There was no person there to choose a treatment. Only I could choose, and I was given detailed information on side effects.

The important thing for me is that it is very clear that in the UK at least psychiatrists use ECT less than they know they should in the patient's interest. All the psychiatrists I have met agree on this. When my wife had ECT it was explained that it would have been better to give it three months earlier, which would have avoided her three months in a psychiatric ward and three months of horror for me and my daughter. I was also told that if she had had it earlier she might well have recovered with one or two courses rather than needing three.

The reason why psychiatrists delay using ECT and it requires exhaustive explanations and countersigning by two specialists in the UK is because there has been so much antagonism to the treatment by the public on purely emotional grounds.

And here is where it is relevant to ME. Dr Wessely and Dr Sharpe are very happy for ME activists to complain bitterly about ECT on emotional grounds because that allows them to claim that all the objections to CBT are also merely emotional. Children are dying of measles because of the emotional objections to vaccines. People like my wife have to suffer in psychiatric wards for too long because of emotional objections to ECT. CBT is only going to be taken off the treatment list for ME when the medical establishment finally appreciate that objection to it is not the same - but is based on scientific argument.
 
Confession time - a relative of mine worked in a fairly notorious (locally anyway) psychiatric hospital in England in the 50s and 60s. They routinely dealt with high security patients, patients in padded rooms etc.. ETC was not part of their daily routine, but, on occasion, they were required to assist during ECT.

I think they were a bit traumatised by the experience themselves to be honest...

Many practices in the past were barbaric: as much because of the way they were carried out, were carried out on the wrong people, went too far. Sadly, it's by learning from these things that we hone and refine medicine further.

Sometimes, the unpalatable treatment is the best option for some.

I really appreciate your willingness to share details about what must have been extremely distressing times for you and your families @Jonathan Edwards and @Barry.
 
In the netherlands we have a saying: Zachte heelmeesters maken stinkende wonden.
Gentle healers make stinking wounds.

I think it comes from if not enough tissue is removed from a wound it will get worse.
 
Jonathan Edwards said:
But surely whether or not we consider a treatment OK must be based on its true medical value and for ECT that is well established.
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Thank you, @Jonathan Edwards, for sharing your experience.
Also thank you to @Barry and @Invisible Woman.

Since I heard in this thread for the first time that the efficacy of ECT is well-established, could you link to more information like publications?
 
Inara said:
Since I heard in this thread for the first time that the efficacy of ECT is well-established, could you link to more information like publications?
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The second article by Coyne quoted in message #5 gives a number of papers and general sources.

In his first article Coyne gives reasons why there does not appear to be a standard randomised controlled trial. I think his reasons are a bit doubtful but that does not really matter when he goes on to explain in the second article that plenty of useful trials have been done.

One of the things I think these trials indicate is that a standard randomised controlled trial is not actually the 'gold standard' so much as trials of dose response. In pharmacology we like to see a simple trial of drug against control but do not really believe it until we have seen that the effect is dose related. For ECT a lot of the studies are effectively dose response studies because it is hard to do absolutely nothing.

The other thing that makes a result convincing is a stereotyped response kinetic and again there are studies for ECT that show that.
 
Inara said:
This is just a very spontaneous thought: What about ECT in ME? Why - or why not?
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I think, partly from what JE wrote further up the thread, the question would be why?

If one believed the problem lay in the brain that might be a start, but I don't think (m)any of us believe that.

Also it sounds as if there are very tight criteria for trying ECT, so I doubt they'd just give it a go. Assuming we were willing to try it.

In addition it sounds as if you would need 2 specialists to sign off on it in the UK and, given many of us struggle to get even routine blood or other tests done, I doubt you'd find many docs willing to sign off on it.

If it came down to would I, personally, try it.....I would want plenty of sound evidence first.
 
Inara said:
This is just a very spontaneous thought: What about ECT in ME? Why - or why not?
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That is not such a silly question. However, ECT is directed at the cerebral cortex, which is where 'thinking' links sensations to actions. I think ME might be entirely a brain problem but if it is it looks much more like a brain stem or hypothalamic problem. ECT is unlikely to do any good there, I think.

ECT has been widely used in the past and if it was good for ME I think somebody would probably have noticed in the 1950s or some time thereabouts.
 
Jonathan Edwards said:
The important thing for me is that it is very clear that in the UK at least psychiatrists use ECT less than they know they should in the patient's interest. All the psychiatrists I have met agree on this.
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Of course they do, it would be like asking PACE pushers if they agree about prescribing CBT/GET to ME/CFS patients. They will certainly agree.

Jonathan Edwards said:
And here is where it is relevant to ME. Dr Wessely and Dr Sharpe are very happy for ME activists to complain bitterly about ECT on emotional grounds because that allows them to claim that all the objections to CBT are also merely emotional.
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Indeed
https://www.nature.com/articles/35002188
 
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Jonathan Edwards said:
The cortex is close under the electrodes and voltages across the electrodes are likely to activate the cortical cells. The hypothalamus is about as deep down as you can get - several inches. I doubt that there would be much voltage across it at doses safe for the cortex.
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You could use needles/electrodes?
 
I have looked at Coyne's blog about ECT. I didn't analyze the papers he cited. A very spontaneous thought was: Why should I trust any papers produced by psychologists/psychiatrists, knowing they cheat at least 90% of the time (at least in this area)? The PACE trial is a very prominent example. It showed no effect of CBT/GET. But they let it look like CBT/GET are wonderful, and they still promote that. Why is ECT different?

I think part of my problem is to see ECT in the wrong hands. Indeed, it can be possible that electroshocks can be helpful for some. But I want to see proper research into this. I want to understand what electroshocks do (it is not understood today). I want to know that electroshocks are performed by trustworthy people, and for me most of psychiatry is not trustworthy, and it doesn't produce good research.

Edit: And above all if ECT could be a treatment option for ME, at least in principle, and maybe with needles (?).
 
Invisible Woman said:
Confession time - a relative of mine worked in a fairly notorious (locally anyway) psychiatric hospital in England in the 50s and 60s. They routinely dealt with high security patients, patients in padded rooms etc.. ETC was not part of their daily routine, but, on occasion, they were required to assist during ECT.

I think they were a bit traumatised by the experience themselves to be honest...

Many practices in the past were barbaric: as much because of the way they were carried out, were carried out on the wrong people, went too far. Sadly, it's by learning from these things that we hone and refine medicine further.

Sometimes, the unpalatable treatment is the best option for some.

I really appreciate your willingness to share details about what must have been extremely distressing times for you and your families @Jonathan Edwards and @Barry.
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“Unmodified” ECT is the 1950s was nothing like it is today with general anaesthesia and muscle relaxant. Patients seem far less distressed than going to the dentist tbh.
 
Jonathan Edwards said:
The cortex is close under the electrodes and voltages across the electrodes are likely to activate the cortical cells. The hypothalamus is about as deep down as you can get - several inches. I doubt that there would be much voltage across it at doses safe for the cortex.
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Direct stimulation of cortical areas through which the electrical current passes seems more linked to side effects than efficacy of ECT provided you have achieved a generalised seizure which is of course the goal of every treatment session. This is the reasoning behind using right unilateral electrode placement. By avoiding directly passing the current through the left temporal lobe, the memory side effects are somewhat lessened but it still works to clear the depression. Interestingly, there is a clear dose-response relationship with efficacy of right unilateral ECT where you have to use a much higher dose relative to the patient’s seizure threshold than in bilateral ECT which works at a low dose. So, a generalised seizure is a necessary but not sufficient condition for efficacy.

Whilst you’re not directly stimulating the hypothalamus, the seizure activity does spread throughout the brain (we have neuroimaging studies) and ECT’s effects on the hypothalamic pituitary axis are widespread with documented effects on ACTH, cortisol, vasopressin, prolactin etc. It also alters autonomic function so the brain stem gets it too.

I agree that if it worked for ME/CFS this would have been noticed long ago, though to be fair this diagnosis is not recognised or used in mainstream psychiatry. But it’s been commented for decades that ECT works for ‘endogenous depression’, especially in psychotic and geriatric patients, and does not work well for ‘neurotic’ or ‘psychosomatic’ pts which is the sort of terminology they use for us.
 
Alvin said:
Indeed
https://www.nature.com/articles/35002188
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I had a look at this linked document. It is a short letter criticising ECT in response to a book review which presumably supported ECT, but is inaccessible.

The only reference quoted in support of the argument in the letter is an article from 1950, which, while of historical interest, does not seem to contribute anything useful to the discussion here about current use of ECT which, as has been explained, is very different from what it was nearly 70 years ago.
 
Trish said:
I had a look at this linked document. It is a short letter criticising ECT in response to a book review which presumably supported ECT, but is inaccessible.

The only reference quoted in support of the argument in the letter is an article from 1950, which, while of historical interest, does not seem to contribute anything useful to the discussion here about current use of ECT which, as has been explained, is very different from what it was nearly 70 years ago.
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It's one zealot's opinion piece. Modern neuroimaging studies not only don't show brain damage but in fact show increased hippocampal neurogenesis after the treatment.
 
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