Using new technology, a completely paralyzed man is given the ability to communicate letter by letter, making words and sentences using thoughts alone. This is no crap shoot at an online casino – this is real science improving lives. This giant leap was made possible by researchers using auditory neurofeedback in an effort to help the patient in question manipulate his own brain. The patient suffers from amyotrophic lateral sclerosis (ALS).
Back in 2020, a biomedical engineer, Ujwal Chaudhary, at the University of Tubingen and the Wyss Center for Bio and Neuro-engineering in Geneva was excited to learn that an experiment that he had been working on for a number of years came to fruition. He was carrying out an experiment and watching a paralyzed patient lying in the laboratory whose head was connected to a computer via a cable and heard a synthetic voice say the letters E, A, D, in German.
Amyotrophic lateral sclerosis is a disease which leads to the gradual degeneration of brain cells controlling motion. This patient had been diagnosed several years earlier with this and was at the stage where he was no longer able to move his eyeballs so from a medical standpoint was in locked-in syndrome.
However, with Chaudry’s experiment it seemed that this was not the case. This man had somehow acquired the ability to visualize his eyes moving without them actually moving physically. The computer spoke out those chosen letters, forming words and sentences.
He went onto write: “Wegen essen da wird ich erst mal des curry mit kartoffeln haben und dann bologna und dann gefuellte und dann kartoffeln suppe – For food I want to have curry with potato then bologna and potato soup.” Dr Chaudhary was amazed and said “I myself could not believe that this is possible.” Dr Chaudharyha has since become managing director of a neurobiotechnology company in Germany called ‘ALS Voice aGmbH’.
Nature Communications recently published the study. Dr. Niels Birbaumer who led the study and was formerly a neuroscientist at the University of Tubingen says this was the first time a patient in a completely locked in state was able to communicate with those around him.
Two further experiments were conducted by Dr. Chaudhary and Dr. Birbaumer in 2017 and again in 2019 both on patients who were considered locked in and they reported that the results were the same as previously and that both were able to communicate. However, following an investigation carried out by the German Research Foundation, both studies were withdrawn. The investigation found that the researchers had not fully recorded the tests on video, nor had they included full details and some false statements had been made.
Dr. Birbaumer was found to have committed scientific misconduct and was subject to severe sanctions which included a 5- year ban disallowing him from submitting proposals and working as a reviewer at the foundation. Dr. Chaudhary was also found to have committed scientific misconduct and he received a 3- year ban. Both doctors refused to retract their papers when asked.
Martin Spuler, a researcher, was the person to raise concerns in 2018 which prompted the investigation to take place.
Dr. Birbaumer, standing by the conclusions of his study, initiated a lawsuit against The German Research Foundation, and the results of this legal action should be published very soon. Both Dr. Birbaumer and Dr. Chaudhary are confident that they will be successful.
A representative of Nature Communications, where the study was published said “We have rigorous policies to safeguard the integrity of the research we publish, including to ensure that research has been conducted to a high ethical standard and is reported transparently.”
Natalie Mrachacz-Kersting, a brain computer interface researcher at the University of Freiburg, who was not part of the study says “I would say it is a solid study.” But others have reservations.
A researcher at the University of California, Brendan Allison says “This work, like other work by Birbaumer, should be taken with a massive mountain of salt given his history.” He mentioned that his own team published a paper in 2017 where it was reported that communication with locked in patients resulted in simple responses of yes and no answers.
The results of the study could potentially improve the quality of life for patients in unresponsive situations and that figure is growing and by 2040 could reach 300,000.
For Steven Laureys, a neurologist and researcher, head of Coma Science Group in the University of Liege in Belgium “It’s a game-changer.” It can impact the whole question of euthanasia for patients in these unresponsive situations. Laurey goes on to say “It’s really great to see this moving forward, giving patients a voice in their own decisions.”
A multitude of methods have been used to communicate with locked in patients, from using basic pen and paper or someone pointing to or vocalizing the name of an item and then searching for any kind of response from the patient, like blinking, or finger twitching.
In recent years a new method has become the focus of much attention and many research organizations along with entrepreneurs like Elon Musk have invested huge amounts in the new technology. It is called brain-computer interface technologies whose goal it is to translate someone’s brain signals into commands. It has produced some interesting and exciting results: “patients moving prosthetic limbs using only their thoughts, and those with strokes, multiple sclerosis and other conditions communicating once again with loved ones.”
Until now, scientists have not been able to really communicate with really locked in patients. Prior to 2017 this particular patient had been able to communicate using eye movements but the situation was worsening. Seeking alternative ways to communicate the family contacted the two doctors who were working nearby and who were experts in the field of brain computer interface technology.
Dr. Jens Lehmberg, a neurosurgeon implanted two small electrodes into the patient’s brain that controls movement. For the following two months he was asked to imagine himself moving his body parts, including his tongue to see if this would create a brain signal. The result was not positive.
Auditory neurofeedback was suggested in an effort to get the patient to manipulate his own brain activity. Presented with a note, high or low, relating to yes or no. Then a second note, mapping the brain activity which the electrodes in his brain had detected. Imagining himself moving his eyes he was ultimately able to alter the pitch and thereby gain feedback and be able to raise or lower the pitch depending on whether he wanted to say yes or no.
Jonas Zimmerman, a neuroscientist at the Wyss Center and also on the study, said “That was when everything became consistent, and he could produce those patterns.” Over time the patient became more skilled and was able to produce words and sentences.
Dr. Mrachacz-Kersting suggested that it could be that “patients who keep their minds stimulated could experience longer, healthier lives.” However, she did point out that this study needed to be tested on many more people before truly accepting the findings. This was also reflected in the words of Neil Thakur of the ALS Association when he said “This approach is experimental, so there’s still a lot we need to learn.”