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The Completely Locked-In Can Tell Us How They Feel For the First Time
A new brain-to-computer interface lets completely locked-in patients tell us how they feel for the first time.
It's many people's idea of a nightmare: Being so paralyzed that you can no longer communicate at all. The closest most of us have come to understanding what this could even be like would be via Jean-Dominique Bauby's memoir and film, The Diving Bell and the Butterfly. Bauby was able to dictate his story by blinking his left eyelid, his one remaining movement — he died two days after the book's French publication. People in what's termed a “completely locked-in state" can't even blink.
For those of us used to being able to communicate our thoughts and feelings, it may seem impossible for someone in this state to be anything other than miserable. It's difficult for us to even imagine the experience. And until neuroscientist Adrian Owen detected blood-flow changes in key areas within these patients' brains in 2010, it had been largely assumed that completely locked-in patients were in a vegetative state. His startling findings suggested that they can be conscious and aware of their surroundings. Even so, they were still absolutely cut off from the rest of us. Until now.
Scientists at the Wyss Center for Bio and Neuroengineering in Geneva, Switzerland reported in PLOS Biology that they have for the first time successfully used a new brain-to-computer interface (BCI) to “interview" four completely locked-in patients. And it appears they're glad to be alive.
Researchers have been attempting to use BCIs with the completely locked-in for some time because these devices don't depend on muscle movement. Most of them record electrical activity in the brain using electroencephalography (EEG). Early attempts involved the surgical implantation of electrodes directly in the brain, while recent, more comfortable BCIs use electrodes on the scalp, but they don't work well with the completely locked-in.
The Wyss Center's BCI takes a different approach. Developed by a team led by neuroscientist Niels Birbaumer, it detects changes in the subject's blood flow using functional near-infrared spectroscopy (fNIRS).
Model wearing BCI (WYSS CENTER)
The “interview" process began with doctors asking four ALS patients to respond to yes/no questions for which the answers were known, such as: “Your husband's name is Joachim?"
With this setup, locked-in patients were able to respond to questions with a “yes" or “no" by focusing their attention in a specific way. The two possible answers produced two distinctly different changes in blood flow, and scientists were able over time to establish with a reasonable degree of certainty (70%) which one meant “yes" and which one meant “no."
According to Wyss's account:
In one case, a family requested that the researchers ask one of the participants whether he would agree for his daughter to marry her boyfriend 'Mario'. The answer was “No" nine times out of ten.
Three patients were questioned during 46 sessions. The fourth — whose emotional state was judged to be more fragile based on her family's advice — had 20, and she was asked less open-ended questions than the others.
Scientists were able to ask their subjects the Big Question: How do you feel about your life? Stunningly, three of the four subjects consistently responded “yes" to the question “Are you happy?" And when presented with the statement “I love my life," they responded in the affirmative. Life apparently remains worth living to them in spite of their ALS.
It's rare that a scientific result is emotionally moving like this. Imagine the relief of patients' family members who find out that their loved ones aren't consumed by suffering after all, and are living enjoyable lives. It's a happy ending to what otherwise must have been an endless nightmare.
Obviously, this represents breakthrough in our understanding of what life is like for completely locked-in people. More critically, it answers the nagging question of whether their quality of life justifies continued, often expensive medical support. As the Daily Beast puts it, “All four had accepted artificial ventilation in order to sustain their life when breathing became impossible so, in a sense, they had already chosen to live."
Birbaumer hopes to move beyond yes/no questions by further developing his BCI to allow subjects to form words by selecting letters. And the device can already be of use as a diagnostic tool for ascertaining whether ALS patients and others are in a truly vegetative state, or simply unable to communicate.
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Gender and sexual minority populations are experiencing rising anxiety and depression rates during the pandemic.
- Anxiety and depression rates are spiking in the LGBTQ+ community, and especially in individuals who hadn't struggled with those issues in the past.
- Overall, depression increased by an average PHQ-9 score of 1.21 and anxiety increased by an average GAD-7 score of 3.11.
- The researchers recommended that health care providers check in with LGBTQ+ patients about stress and screen for mood and anxiety disorders—even among those with no prior history of anxiety or depression.
Study findings<p>For the study, <a href="https://link.springer.com/article/10.1007/s11606-020-05970-4" target="_blank">published in the Journal of General Internal Medicine</a><em>, </em>Flentje and her team evaluated survey responses from nearly 2,300 individuals who identified as being in the lesbian, gay, bisexual, transgender, and queer (LGBTQ+) community. Most of the participants were white, while nearly 19 percent identified as a racial or ethnic minority. Multiple genders were represented with cisgender women (27.2 percent) and men (24.6 percent) making up a majority of the participants. Sixty-three percent had been assigned female at birth. For the most part, participants identified their sexual orientations as queer (40.3 percent), gay (36.5 percent), and bisexual (30.3 percent).</p><p>The JGIM study participants were recruited from the 18,000-participant <a href="https://pridestudy.org/" target="_blank">PRIDE Study</a> (Population Research in Identity and Disparities for Equality), which is the first large-scale, long-term national study focusing on American adults who identify as LGBTQ+. It conducts annual questionnaires to understand factors related to health and disease in this population. </p><p>Participants filled out an annual questionnaire (starting in June 2019) and a COVID-19 impact survey this past spring. Flentje noted that on an individual level, some people may not have experienced a big change in anxiety or depression levels, but for others there was. Overall, depression increased by a <a href="https://patient.info/doctor/patient-health-questionnaire-phq-9" target="_blank">PHQ-9 score</a> of 1.21, putting it at 8.31 on average. Anxiety went up by a <a href="https://www.mdcalc.com/gad-7-general-anxiety-disorder-7" target="_blank">GAD-7</a> score of 3.11 to an average of 8.89. Interestingly, the average PHQ-9 scores for those who screened positive for depression at the first 2019 survey decreased by 1.08. Those who screened negative for depression saw their PHQ-9 scores increase by 2.17 on average. As for anxiety, researchers detected no GAD-7 change among the study participants who screened positive for anxiety in the first survey, but did see an overall increase of 3.93 among those who had initially been evaluated as negative for the disorder. </p>
Risks among gender and sexual minorities<span style="display:block;position:relative;padding-top:56.25%;" class="rm-shortcode" data-rm-shortcode-id="fc3fd1ae68b77bbbf58a6995638d6d65"><iframe type="lazy-iframe" data-runner-src="https://www.youtube.com/embed/EnUqDjCqg0A?rel=0" width="100%" height="auto" frameborder="0" scrolling="no" style="position:absolute;top:0;left:0;width:100%;height:100%;"></iframe></span><p>The LGBTQ+ community is a vulnerable population to mental health concerns because of their fear of stigmatization and previous discriminatory experiences.</p> <p>Previous research by the Human Rights Campaign has found "that LGBTQ Americans are more likely than the <a href="https://medicalxpress.com/tags/general+population/" target="_blank">general population</a> to live in poverty and lack access to adequate medical care, paid <a href="https://medicalxpress.com/tags/medical+leave/" target="_blank">medical leave</a>, and basic necessities during the pandemic," said researcher Tari Hanneman, director of the health and aging program at the campaign.</p> <p>"Therefore, it is not surprising to see this increase in anxiety and depression among this population," Hanneman said in the release. "This study highlights the need for <a href="https://medicalxpress.com/tags/health+care+professionals/" target="_blank">health care professionals</a> to support, affirm and provide <a href="https://medicalxpress.com/tags/critical+care/" target="_blank">critical care</a> for the LGBTQ community to manage and maintain their mental health, as well as their physical health, during this pandemic."</p>
What should health care providers do?<p>The authors of the study recommend that health care providers check in with LGBTQ+ patients about stress and screen for mood and anxiety disorders in members of that community—even among those with no prior history of anxiety or depression.</p><p>As cases of COVID-19 continue to mount, the sustained social distancing, potential isolation, economic precariousness, and personal illness, grief, and loss are bound to have increased and varied impacts on mental health. Effective treatments may include individual therapy and medications as well as more large-scale coronavirus support programs like peer-led groups and mindfulness practices. </p><p>"It will be important to find out what happens over time and to identify who is most at risk, so we can be sure to roll out public health interventions to support the mental health of our communities in the best and most effective ways," said Flentje.</p>
What we know about black holes is both fascinating and scary.
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- A black hole is so massive that light (and anything else it swallows) can't escape, says Bill Nye. You can't see a black hole, theoretical physicists Michio Kaku and Christophe Galfard explain, because it is too dark. What you can see, however, is the distortion of light around it caused by its extreme gravity.
- Explaining one unsettling concept from astrophysics called spaghettification, astronomer Michelle Thaller says that "If you got close to a black hole there would be tides over your body that small that would rip you apart into basically a strand of spaghetti that would fall down the black hole."