Marcelo Leite

It took 107 days for the 34-year-old German to issue a full sentence: “erst mal moechte ich mich niels und seine birbaumer bedanken” (first I would like to thank niels and his birbaumer). A redemption, both for him and for the researcher who rescued him from the diving suit his body had become.

The young man born in 1985 was diagnosed in 2015 with a type of amyotrophic lateral sclerosis (ALS). The paralysis progressed rapidly, and communication devices stopped working when he lost control of his eyes, which he used to point out letters on a panel.

Unable to move any muscle, the most extreme form of incarceration syndrome set in. The patient, envisioning such an outcome, had authorized the family months earlier to seek help from the controversial scientist Niels Birbaumer.

In 2017, a previous article by Birbaumer’s team had been canceled by PLoS magazine. The study described how a cap with electrodes picked up enough neuronal signals from sufferers of the syndrome to choose letters and form words, but one whistleblower questioned the methods and results.

Birbaumer lost his reputation and his job. He sued the University of Tübingen, which eventually accepted a settlement. He now resurfaces with a work thoroughly documented in the periodical nature communications.

His group stuck two plates with 64 microelectrodes each into the patient’s motor cortex, which penetrated 1.5 mm into the brain tissue. A device on the surface of the skull recorded the electrical activity of neurons captured by the needles and sent the signals to a computer.

Training to produce “yes” and “no” answers took more than three months. The young man could hear the researchers, and was instructed to try to change the frequency of the beeps heard—faster, positive response; slower, negative.

No one knows how he managed it, but it was enough to go back to choosing lyrics presented, at the rate of 131 a day. The sentence that opens this column, for example, took almost an hour to form.

The article presents the results obtained over 107 days, of which the boy managed to produce intelligible sentences in only 44 days. In all, 5,747 letters were selected over 5,338 minutes in 135 message spelling sessions.

Many were instructions to increase her comfort, such as “mama kopfmassage” (mummy’s head massage) on the 247th day. Even beer and goulash the German ordered.

The most banal and moving were addressed to the 3-year-old son, as “moechtest du mit mir disneys die hexe und der zauberer anschauen auf amazona[?](Do you want to watch Disney’s ‘The Sword of the Law’ on Amazon?) Imagine this man’s joy and relief.

Birbaumer told STAT magazine: “We do these things because we want these people to be alive, even if society doesn’t want them that way.” The researcher attributes its cancellation to advocates of euthanasia, as his system rescues the dialogue with patients who need respirators to maintain their lives.

“This work has political implications against euthanasia laws,” he declared. “In Europe, there is a strong political force behind the liberalization of euthanasia laws, so this kind of research is very controversial.”

Before controversial: generous, compassionate, liberating. But care must be taken to obtain the consent of the prisoners, for one thing or another, before they are locked in the diving suit. Not everyone will want to continue living like this.

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