In 2020 Ujwal Chaudhary, a biomedical engineer at the University of Tübingen and the Wyss Center for Bio and Neuralengineering in Switzerland, watched his computer screen for the first time as he had spent years on an experiment. A man who was paralyzed lay on his back in a lab, his head connected to a computer. There is a synthetic voice in German.
A few years ago, the patient was diagnosed with amyotrophic lateral sclerosis, which leads to the progressive loss of brain cells involved in motion. The man had lost the ability to move his eyeballs and was completely unable to communicate; in medical terms, he was in a locked-in state.
It seemed like it. The man was able to select letters from a steady stream that the computer spoke aloud by imagining his eyes moving. He wrote a letter every minute or so.
He wrote at one point, "Wegen essen da ist mal des curry."
Dr. Chaudhary and his colleagues were dumbstruck.
The first example of a patient in a locked-in state communicating with the outside world was shown in the study.
Two similar experiments were conducted on patients who were locked in and were able to communicate. The German Research Foundation concluded that the researchers had only partially recorded the exams of their patients on video, had not appropriately shown details of their analyses and had made false statements. The German Research Foundation imposed some of its most severe sanctions, including a five-year ban on submitting proposals and serving as a reviewer.
The agency found that Dr. Chaudhary had also committed scientific misconduct and imposed the same sanctions for three years. Both he and Dr. Birbaumer refused to withdraw their papers.
Martin SpxFC;ler, a researcher, raised concerns about the two scientists.
The German Research Foundation was taken to court by Dr. Birerbaum. Marco Finetti said the results of the lawsuit would be published in the next two weeks. His lawyers expect to win the case.
The German Research Foundation has no knowledge of the current study and will investigate it in the coming months. A representative for Nature Communications who asked not to be named said that they have rigorous policies to safeguard the integrity of the research they publish.
Natalie Mrachacz-Kersting, a brain-computer interface researcher at the University of Freiburg in Germany, said it was a solid study. She was not involved in the study and was aware of the previously discredited papers.
Brendan Allison is a researcher at the University of California San Diego. He noted that in a paper published in 2017: his own team described being able to communicate with locked-in patients with basic answers.
The results hold promise for patients in similar unresponsive situations, including minimally conscious and comatose states, as well as the rising number of people diagnosed with the disease every year. The number is expected to reach 300,000 by the year 2040.
Steven Laureys, a neurologist and researcher who leads the Coma Science Group at the University of Lige in Belgium, was not involved in the study. It is great to see this technology moving forward and giving patients a voice in their own decisions.
Communication methods have been used to communicate with unresponsive patients. Basic pen-and-paper methods are used by some. In some cases, a caregivers points to or speaks the names of items and looks for microresponses from the patient.
Brain-Computer interface technologies aim to translate a person's brain signals into commands. Private companies and entrepreneurial billionaires have invested in the technology.
The results have been mixed but compelling, with patients moving their limbs using only their thoughts and those with strokes communicating with loved ones.
Scientists have been unable to communicate with people like the man in the new study, who had no movement at all.
The patient used eye movements to communicate with his family before he became locked-in. The family asked for an alternative communication system because they were worried that he would lose his ability.
Dr. Jens Lehmberg implanted two small wires in the man's brain to control his movement. For two months, the man was asked to imagine moving his hands, arms and tongue to see if it generated a signal in his brain. The effort yielded nothing reliable.
Dr. Birerbaum suggested that patients be trained to manipulate their own brain activity with the use of auditory neurofeedback. The man had to match the note he was presented with.
The second note mapped onto brain activity that had been detected. He was able to change the pitch of the second tone to match the first by concentrating and imagining moving his eyes. He was able to heighten the pitch when he wanted to say yes or no because of the real-time feedback he received.
Immediate results were seen by this approach. The man was able to change the second tone on his first day. He was able to match the second to the first.
The author of the study said that when everything became consistent, he could reproduce those patterns. When the patient was asked what he was imagining to do, he replied "eye movement."
The man applied this skill over the course of a year. When the patient could still move his eyes, the scientists used a communication strategy that he had used with his family.
The letters were grouped into five different colors. The man replied "yes" or "no" depending on whether the letter he wanted to select was in the set. Each letter was listed out by the voice in a similar fashion. He repeated the steps in order to articulate full sentences.
On the second day of his spelling endeavor, he wrote: "First I would like to thank Niels and his birbaumer."
He had instructions such as "everyone must use gel on my eyes more often" and "mom head massage".
A total of 44 intelligible sentences were produced by the man's spelling. He wrote at about one character per minute.
It blew my mind, said Dr. Mrachacz-Kersting. She thought that locked-in patients could experience a longer, healthier life.
The study was based on one patient and would need to be tested on many others.
Other researchers were cautious in embracing the findings.
The approach is experimental, so there is still a lot we need to learn.
The technology is too complex for patients and families to operate on. Making it more user-friendly and speeding up communication speed will be crucial. He said that a patient's relatives will probably be satisfied until then.
He said that there were two options: no communication or communication at one character per minute.
Time is the biggest concern. The implants were inserted in the patient's brain three years ago. His answers have become slower, less reliable and difficult to discern since then, said Dr. Zimmermann, who is now caring for the patient at the Wyss Center.
The cause of the decline is not known, but Dr. Zimmermann thought it was related to technical issues. The life expectancy of the electrodes is nearing the end. Replacing them now would be a bad idea.
The Wyss Center is developing wireless microelectrodes that are safer to use. The team is exploring other techniques that have been successful in previous studies on patients who are not locked-in.
Dr. Laureys of the Coma Science Group said there would be no value in fostering a sense of despair when there were viable innovations on the horizon.
He said that he was excited as a clinician and that he thought it was wonderful to offer new scientific insights and technology to very vulnerable and dramatic conditions.