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  • A newly published study in Nature Communications shows it may now be possible for people living in a completely locked-in state (CLIS) to communicate with the outside world.
  • Locked-in syndrome is also one potential consequence of amyotrophic lateral sclerosis (ALS), once called Lou Gehrig’s disease.
  • ALS is a rare, degenerative disease affecting the body’s nerves.

For decades physicians have been trying to find a way to help people with ‘locked in’ syndrome. This syndrome can occur due to certain illnesses and leads people to lose the ability to move any muscle in their body even as they remain fully conscious and aware of what’s going on.

Locked-in syndrome is also one consequence of the degenerative amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease after the famous baseball player.

People with ALS lose control over their bodies and eventually become unable to communicate.

But now, a recently published study in Nature Communications shows it could now be possible for people living in a completely locked-in state (CLIS) to communicate with the outside world.

Niels Birbaumer, PhD, leader of the study and a former neuroscientist at the University of Tübingen, told Healthline his goal was to demonstrate that people with CLIS can communicate, “and it worked.”

According to Birbaumer, people with CLIS are “virtually blind” and completely paralyzed. Still, he found a way for them to communicate by using their brain activity to select letters to formulate sentences.

The participant in this study is a man in his thirties with ALS who began working with Birbaumer and his team in 2018 when he could still communicate by moving his eyes.

He told them that he wanted an invasive implant to try to maintain communication with his family.

ALS is a rare, degenerative disease affecting the body’s nerves, According to the Centers for Disease Control and Prevention (CDC).

With ALS, nerve cells gradually lose the ability to trigger specific muscles, causing weakness that develops into paralysis – which in some eventually leads to CLIS.

While heredity and environmental factors have been investigated as possible causes of the condition, the CDC confirms that no definite cause has yet been found.

The participant in this study had microelectrode arrays implanted in two motor areas of his brain after researchers received written consent from the man’s family. The technology is called a brain-computer interface (BCI).

According to the study, the patient was instructed to try different techniques to generate a signal, but manipulating the pitch of a particular sound was the one that proved successful.

Using neural signals allowed the patient to communicate via the computer.

“The patient, who is in home care, then employed an auditory-guided neurofeedback-based strategy to modulate neural firing rates to select letters and to form words and sentences using custom software,” explained Birbaumer.

According to one researcher, it was thought people with complete paralysis might no longer be capable of communicating, even mentally.

“This study answers a long-standing question about whether people with complete locked-in syndrome (CLIS) – who have lost all voluntary muscle control, including movement of the eyes or mouth – also lose the ability of their brain to generate commands for communication,” Jonas Zimmermann, PhD, a study author and Senior Neuroscientist at the Wyss Center in Geneva, said in a statement.

He added that to his knowledge, this is the first study to achieve communication with someone who has no remaining voluntary movement and for whom a BCI is their only means of communication.

Paul Poulakos, DO, a board certified psychiatrist in Greenwich Village, New York, said being fully lucid while experiencing intense bodily changes such as losing voluntary muscle movement, or the ability to speak has psychological consequences.

“Communication is a primary means of connecting with others,” he pointed out. “Our ability to communicate allows us to relate, empathize, and grow.”

Poulakos noted that an inability to communicate limits how we connect with others.

“We are unable to describe our emotions or engage in back-and-forth communication that fosters learning,” which he added may be associated with a lower overall quality of life.

Poulakos considers these findings a “profound development” for the mental health of ALS patients.

“As it could facilitate their ability to communicate,” he said. “Communication in many ways is what sets us apart from other species. It is what allows us to connect to others.”

According to Poulakos, this development may lead to much-needed research highlighting the levels of mental health disorders such as depression or anxiety present in the ALS population or a spike in well-being after having access to this technology.

“In addition, it could assist these individuals in attending to their needs, such as seeking mental health care,” he said.

Asked about this technology’s potential and how he sees it developing in the future, Birbaumer said it must first be simplified.

“So that family members and caretakers can use it independently of experts,” he said.

Birbaumer expressed his hope that this technology helps people who may otherwise choose euthanasia due to intractable medical conditions that prevent communication.

“Then many people who now decide to die because of fear of [losing] social contact will live a decent life,” he said.

Birbaumer had conducted similar research in 2017 and 2019 on patients living with CLIS but was forced to retract his findings after an investigation by the German Research Foundation (DFG) due to whistleblower allegations of misconduct.

The allegations against Birbaumer and Chaudhary related to DFG-funded research work with critically ill patients who, due to a neurodegenerative disease, are in a state of complete paralysis and no longer able to communicate with the outside world,” read a translated version of the report.

The DFG imposed sanctions that included a five-year ban on submitting proposals or acting as a reviewer for the organization – along with retraction of the studies.

The editors of PLOS published a response to the retraction request. It clarified that DFG’s findings did not consider the researchers’ methodology and that Birbaumer and associates stand by their data, analyses, and conclusions.

An open letter to DFG on Birbaumer’s behalf claims that DFG didn’t treat the researcher fairly or present all the facts in this case.

Researchers discovered that using an electronic brain implant, a completely paralyzed person with degenerative nerve disease could communicate after years of being unable to do so.

Experts say this development has profound implications for the mental health of people with this condition.

They also say the technology needs to be simplified for wider use and that it has the potential to vastly improve the quality of life for those affected with complete paralysis.