I suffered an incomplete (cervical) spinal cord injury years ago.
Through my 'medical journey' and many many months in the ICU before rehab I was placed on a variety of amnesiacs, as well as induced comas.
I remember a lot of things that I really shouldn't -- and I can corroborate the events with eyewitnesses who were otherwise healthy spectators.
I was terrified, unable to communicate, uncomfortable, and most of the time in pain.
When I was finally brought back to 'real' consciousness I had tubes in every orifice, a new tracheotomy, a new HALO drilled into my skull, the inability to speak and the inability to move my arms -- through no ones direct fault my only means of communication , my voice , was taken from me while I was pharmaceutically inebriated and unable to consent -- an emergency action that was medically required.
I eventually regained enough upper limb movement to communicate with a small whiteboard and soft erase markers while in the medical facilities. When the trach was finally removed I regained most of my voice within months of therapy, but the memories and experience still haunt me.
I sincerely hope that we learn enough about human consciousness at some point to allow us to better manage patient awareness and memory forming through trauma -- I think that the medical industry as a whole kind of pushes 'medical PTSD' out of the public arena of consideration as something that is 'required, known, but terrible.' -- but I hope we one day come up with real methods of reducing or preventing that kind of experience all together.
It feels that at this point we're much more adroit at healing bodies than psyches.
What you describe was pretty much my experience when, at 14 years of age, I had to endure brain surgery and spent the next 4 days in an induced coma. I remember everything and I thought I was never going to wake up. It was terrifying and I think I was a bit traumatised by the whole experience.
Jesus, that is truly horrific. I'm sorry you had to go through that not seeing light at the end of the tunnel. I hope they had enough sense to still give you proper anesthesia before plugging things into your body.
I'm not sure about the US, but in Canada, indigenous populations are vocally anti-vaccine specifically because of intergenerational trauma. The government and medical systems have treated them as subhuman for hundreds of years, recently enough that survivors of unethical research performed on residential schools are still alive today. There are certainly parallels with the treatment of black and indigenous people in the US, and I wouldn't be surprised if earned distrust is a driving force for a lot of people.
We have a lot of those same issues in the US and it is a well known driving force of "vaccine hesitancy". The problem is usually framed as "earned distrust of institutions", which is certainly a big part of the story. But "unhealed trauma from medical horrors" probably requires a different remedy than rebuilding trust in institutions, and it should at least be part of the story.
If I'm ever incapacitated, I know the doctors can't say "let's not save this one. we could keep them alive, but it's better for everyone to not do that". That is insane to me, and it makes me deeply distrustful of the whole institution.
To give non-Americans a sense of how things work here: if a doctor suggests that you have surgery and it's not an immediate need, you should seek the opinion of several other professionals to see if you really need the surgery or if the doctor just likes doing that one. Also quackery like homeopathy and chiropractory is allowed in the open.
Smart Americans learn early which parts of the medical system can be trusted and how to get maximum benefit out of them. But I can see how someone might not want to go through all that effort, tune the whole thing out, and tune out vaccinations along with it.
I see this as a trauma response to knowing how abusive the system can be unless it's handled very delicately.
> if a doctor suggests that you have surgery and it's not an immediate need, you should seek the opinion of several other professionals to see if you really need the surgery or if the doctor just likes doing that one.
In France too, that is absolutely what I recommend. Never undergo a non-emergency potentially life-altering medical procedure without getting the opinion of at least another specialist. And also that if you go see a surgeon, their recommendation would almost always be a surgery, even if there are others, less invasive path of treatments.
As the beloved doctor Gregory House put it, "tell a surgeon it’s okay to cut a leg off and he’s going to spend the night polishing his good hacksaw" (instead of looking for other solutions).
> I know the doctors can't say "let's not save this one. we could keep them alive, but it's better for everyone to not do that".
They absolutely can, if they know that that's what you would want and someone from your family isn't actively trying to stop them. That's why it's important for people to have DNRs and/or make their wishes known to multiple family members.
There are indeed some Chiropractors who are quacks, and there are elements of the practice that are not understood well or even contravene our traditional understanding of science and medicine - however, if not for Chiropractors I’d have suffered needlessly. Visiting a Chiropractor and getting adjusted after Airborne operations has brought me back to full operational form. I woke up unable to turn my head on multiple occasions, getting adjusted was the only relief I got after my PCP’s only help was painkillers or the referral to the “quack” (as you put it).
Indeed, I have chronic back pain due to years of computer work with bad posture. I used to go to a chiropractor and I can understand the purpose. There are times where my spine seems to get really out of whack. Maybe I will sleep on my side and my neck will be really tight on one side. What I now do is yoga to stretch and loosen the muscles around the affected area, and then through regular circular motion of the affected joints I will usually, after sometimes a couple of days of stretching, get the joint to "pop" (again, just from slow movement that eventually loosens things up) and I will feel relief.
It may be better to do the slow yoga approach, but there are times where I am in a lot of pain for days in a row. Having a trained professional to look at my body, find the tense areas and apply heat to loosen things up before giving it a good push seems like a valid mode of treatment for what can be debilitating pain. Similar results could probably be achieved from massage, but a masseuse will never give the joint a push to try to reset things, and in my non medical opinion it seems like that could be a useful treatment at times.
It might sometimes work, but chiropractic is still quackery. Let's say I notice that kicking someone in the kneecap seems to cure the cold. If I go around offering to kick people in the kneecaps and don't claim to know why - or even if - it helps that's fine. But once I start saying it optimises your body's energy flow which enlists white blood cells to fight disease, that's quackery.
The whole basis of chiropractic is pseudoscience at best or actively rejecting the scientific method at worst. Part of what they do is likely effective for some. Studies suggest it's about as effective as massage, physical therapy or exercise.
Now, there are absolutely some "good" people in the industry that know and accept that chiropractic orthodoxy is pseudoscience, but nevertheless feel that spinal manipulation helps with some conditions and don't make grand claims or claim to be able to treat non-MSK conditions. It is probably unfair to describe those individuals as quacks. But textbook definition chiropractic as an industry is absolute nonsense.
Let’s draw a line then between chiropractic “can cure stuff beyond muscles, bones, joins, and related pains” and actually useful chiropractor/physiotherapist/remedial massage work… because I utterly despise the quackery yet routinely take advantage of an excellent physiotherapist who basically does “adjustments”, 95% of the time not to my spine but she’s an absolute wizard when it comes to fixing the back pain from occasionally being hunched over on a project in intensive concentration for too long and only noticing after I’ve hurt something and begin feeling pain the next day.
I have no doubt that some of the techniques can help - but "chiropractic" is still pseudoscientific nonsense. Even excluding the outlandish claims that it can cure other conditions, they make unscientific claims about how manipulations help with MSK pain. Chiropractic vertebral subluxations don't exist, joints don't need to be realigned - and even if they did - an activator device wouldn't do it.
As I said, studies do show it is as effective as other forms of manual therapy for MSK pain, which is to say it can be fairly effective.
I think it's probably the case in the USA that people call themselves chiropractors who, in other countries, would refer to themselves as physical therapists, because people know what chiropractors are. Sort of like branding. I've read about US having "evidence based chiropractors" who are, in effect, what in the UK would be called osteopaths - which is still alternative medicine but with far less woo than chiropractic.
I have been to chiropractors, osteopaths and others and did find it effective, but then I also found massage and physical therapy effective. I think just having someone really get in there to give your muscles a rub and crack your joints makes you feel good for some currently not known reason.
Not sure why you were downvoted. Mistrust with medicine is widely documented as a key factor in the slow vaccine rollout for some groups in the US, particularly Black Americans [1][2]. There's a century-long history of bias, mistreatment, and systemic racism which led to mistrust in medicine [3][4]; vaccines are just the tip of the iceberg.
Thankfully the situation is slowly improving thanks to targeted work in specific communities [5], but still some work to do.
EDIT: sure, not directly related to parent's horrific experience, but similar theme: we've made great strides in the last few decades to treat the body, but still struggling to overcome the traumatic experiences some groups had in the recent past.
Your ambiguous phrasing suggests that your references provide "wide documentation" that "mistrust with medicine" is "a key factor" in black people not being vaccinated. Your references 2 and 3 say nothing of the sort. All they document is that blacks and latinos have lower vaccination rates - not the cause. After my random sampling of two of your citations, I assume that the others are similarly unsupportive.
Are the people in US more likely to go through major injuries or operations? If not, then no. Plus if anything, vaccinated people are less likely to have you on vents or on hospital.
When my grandma had a stroke, she wasn't able to do anything at all, no reactions to outside stimuli though brain was showing up alive in scans. As the family gathered around her, weeping and trying to say goodbye, I had an idea to give her a rosary to her hand so that she feels something familiar. To everyone's surprise, her hand started moving over beads in regular intervals as required by the prayer, and my wide family understood she's conscious but simply can't respond to anyone, which brought a bit of a relief and hope to this situation. She managed to be with us for another two months before her state deteriorated further. With the knowledge I have now I could have probably helped her to recover further, but at that time I could only do that for her.
When my grandmother had a stroke, she was unable to speak for multiple days. She was able to hear and understand me and she was able to answer my questions by squeezing her right hand once or twice.
It was an horrible situation. When it happens, you understand that someone you loves can understand everything you say but can’t inform you of anything they wish.
I could not imagine the horror if you can’t even answer with yes or no and being surrounded by people who don’t know that you are here.
Btw, that’s some important discovery that we can communicate via MRI. It must have been a relief for those patients to be able to communicate.
For anyone here caring for relatives with brain injury, PLEASE don’t underestimate or don’t forget to try the visual keyboard solution:
Just draw letters on a big board and let the patient point at them. When it’s a possible solution, it is surprisingly efficient as you can guess orally and he “thumbs up” so he doesn’t have to spell everything out, and after a few tries you can tell stories. You can add bonus pictograms for ideas that repeat.
Thoughts to a fiend I cared for, a few days per week during his last months. After one night playing guitar, he never woke up, and I realized he went to sleep while we were singing him his own songs. What an enemy he was during life, he would have killed me if he knew my political opinions, but once he became weak and harmless and alone, no-one deserves to go alone. If only such people didn’t fight so much against the white christian male ceo archetype during their life… I hate life.
Your point about the visual keyboard is important. As long as they have a repeatable 1 bit worth of output, you can extract any number of bytes. You can have a keyboard where they can see it, move your finger from one letter to the next, and then when they do their 1 bit of output (e.g. blink) that locks in the letter. For the film lovers out there, there's a great dramatization of this in the 2007 French movie The Diving Bell and the Butterfly. [1]
While it seems highly likely that at least some “minimally conscious” patients do, in fact, have much greater interior consciousness than we might have thought, I also think that these stories tend to underemphasize the potentially fragmentary nature of consciousness.
A patient who is able to respond to commands to “visualize playing tennis” may be fully and completely conscious, with only a motor defect—or they might be much less conscious than that, but nonetheless able to process spoken commands and trigger relevant neural activity in response. From the few cases I’ve read, it seems like the bandwidth (so to speak) of the “imagine this if yes, that if no” method of communicating via fMRI is far too limited to draw conclusions about exactly what the interior experience of the patient is.
Not to say this research isn’t interesting. It’s fascinating. But I do sometimes think it makes the same sort of mistakes Benjamin Libet famously did, in making assumptions about the indivisibility of consciousness.
What this kind of science desperately needs is double blind confirmatory evidence.
I suspect that the experiment is vulnerable to bias by an un-blinded scientist conducting the experiment. Almost all of these "veiled consciousness" and "assistive communication" reports are.
Not sure why this is being downvoted, as it’s a valid observation and probably prescient.
Consider that in most every dystopian sci-fi, there is always a faction somewhere - explicit or illicit - that refuses connection to the “net”. We have that even today with the Internet.
As people grow awareness of possible consciousness behind a “vegetative state” I wonder what lengths people will go to avoid the situation. It reminds me of live burial fears.
In the 19th century, master story teller Edgar Allen Poe exploited human fears in his stories, and the fear of being buried alive was no exception. In “Premature Burial," a short story first published in 1844, the narrator describes his struggle with things such as "attacks of the singular disorder which physicians have agreed to term catalepsy," an actual medical condition characterized by a death-like trance and rigidity to the body. The story focuses on the narrator’s fear of being buried alive and the corrective actions he takes to prevent it. He makes friends promise that they will not bury him prematurely, does not stray from his home, and builds a tomb with equipment allowing him to signal for help in case he should be buried alive only to wake from one of his episodes.
While my mother was still aphasic, I was exploring ways to communicate with her and then it occurred to me that she was literate and numerate. At the time, I began writing questions with possible answer choices on a scratch paper and had her read them and select the answer she wanted by tapping her fingers on it. This is how I got to know how she was feeling, what she wanted for a breakfast etc. By the way, she is a technophobe.
I wonder whether this could be a good early human application for Neurallink — with sufficient direct brain I/O we could interact with these patients in a metaverse setting!
Nobody is mentioning Zuckerberg but you and it's pretty worrying you'd rather patients have less options just because Facebook seperately works on related tech.
I keep seeing comments like this all the time—discussion on some solution that is evidently not ideal, but for some reason, the commenter is also very quick to settle for and defend the solution despite its non-negligible negative tradeoffs; as if it’s impossible for something better to be done, which in this case, is not true, because it is not difficult for a social media platform to choose not to track people in coma so that it can show them ads later. Is there a term for it yet? I can only think of reductionism but it doesn’t feel enough.
I don't. If facebook works on VR, that just gives a general push in that area in my opinion. It would be really sad, if fb will be the only option, but I doubt that. In either case, a "coma" patient not being able to move, would be probably thankful for any option.
I don't know about that. Nobody was talking about the metaverse in earnest until FB went and rebranded themselves to it.
Before then, it was some fictional concept in a dystopian sci-fi novel. Now it's got Facebook--I mean Meta--all over it. So it's reasonable to bring this up when someone imagines the potential of neuralinking someone to the metaverse. It almost feels like the suggestion is making Zuckerberg's dream come true for him.
That's not really true. It was a real trend on which Facebook jumped on[0] but yes their involvement overshadowed that. And at any rate clearly the poster here used it in a general sense of a VR Environment rather than meaning Facebook's specific implementation.
> with sufficient direct brain I/O we could interact with these patients in a metaverse setting
I feel like the complexity behind this idea is often lost in optimism about our current capabilities.
While Neuralink and other brain/computer interfaces should be developed (ideally in a non-invasive mode of operation) and have a wide range of possible uses in the future, i think that we're still decades if not centuries away from something like a "metaverse" of any kind.
Instead, currently instead of a simulated room (a la VRChat), it would probably be more like getting direct access to the spindles of a HDD and not really knowing much about the file system or the data on the drive, being able to write/read some arbitrary data and hope for the best.
If it were at all viable at the moment, you could probably communicate in a basic manner (e.g. morse code or yes/no) with someone who cannot utilize their muscles for whatever reason. This is still immensely useful, for example, in the cases as described in the article, but is still far off from immersive environments.
Or maybe my knowledge is out of date and there is promising research out there? Has anyone directly streamed video/3D environments or even pictures to someone's brain, maybe through the optical nerve? What about creating body sensations or interacting with one's sense of balance, or even smell/hearing?
Video has been done, and been around for a while, but IIRC the main barrier to long-term success has been the tendency of scar tissue to form around implanted electrodes (this is not my wheelhouse at all though, someone else can probably offer much more detail).
That's a pretty impressive technology, but isn't it primarily used on blind people, instead of someone who'd need to experience images/video by alternate means temporarily?
It's probably still a viable approach, it's just that care should be taken to not disrupt the functionality of one's eyes whilst adding the necessary implant, which may or may not be doable, depending on the method.
Of course, the point about scar tissue is also a valid one.
It's not exactly photorealistic. most of those in the linked article are <2000 (monochrome) pixels total. Better than totally blind, but still legally blind.
use transient gene therapy to mutate a light sensitive channel into the relevant neurons, guide an optical fiber to the area and trigger via light coupled into the fiber.That is as precise as we can make the targeting of the mutation, and does not cause scaring. Even if some of the vector goes where it is not supppsed to there is litte light inside a skull...
The biggest problem is neural rewiring as response to the unnatural stimulus and ethics comitees.
The technology of brain links is well established. Many people have received surgeries that allow them control things (e.g. robot arms) and feel things (e.g. force feedback on said robot arms). However, these systems require a ton of training and feedback to use. It’s not clear how someone could learn to use the system if they can’t talk. And once you have a chip in someone’s brain, they’re never getting an MRI again.
Neurallink is a fantasy in terms of form factor, ease of use, and that specific teams ability to make something like this. The underlying technology exists but probably isn’t going to be ready for an application like this.
In the article, they mention that these patients can understand verbal commands being given to them. It is also non-trivial to communicate with apes, as they have successfully demonstrated on neuralink.
Even using the basics of left arm and right arm broadly you can establish communication by using dichotomous questioning.
I'd stay away from a corporation attempting to mess with my brain. Especially Elon Musk's corporation. The guy shows tyrant tendencies, made people pay monthly for unfinished software in upfront-paid "self driving" cars, exploits and endangers his employees for profit and is a COVID-downplaying dick using his influencing potential to endanger even more people.
I consider Elon Musk too unstable and unethical sociopath to trust that Neuralink would be used to better mankind, not just Elon Musk. The dude wants power.
I will say no to any kind of direct neural interface run by anyone with any kind of connection to “the cloud.” I must have absolute control over it or absolutely not. The only exception would be something used by a proper doctor to treat an actual medical condition.
A neural link could be thousands of times worse in terms of privacy invasion, addiction, and “rabbit hole effect” brainwashing than anything we have now. Phones and home assistants are invasive but they are not merging with our biology. One can put them down or disconnect them.
History has shown that overt malice or ill intent is not required for things to go evil either. All you need is perverse economic incentives and/or feedback loops leading to destructive emergent behaviors.
But if the choice is that or be a vegetable for a few weeks before my family decide to pull the plug on me, I'll take musk/zuckerbergs brain implant, as I suspect many people would.
It's not clear to me that the doctor established as good a baseline with Carol as the other patient, but at any rate, seems easy enough to seek out a binary response signal provable on known facts for each patient to determine their responsiveness, and then develop a battery of yes/no questions that test all of their non-motor conscious thought processes.
> By changing his pattern of brain activity in the scanner to indicate a ‘yes’ or a ‘no’, Scott was able to tell us that he knew where he was, how long he’d been there, what he enjoyed watching on TV, and whether or not he was in any pain (he wasn’t).
These questions are very open ended and it's difficult to guess how they were made. Is there a link to the paper? Did the person asking the questions know the correct answer? Did the person asking managing the fMRI know the correct answer? Did the person looking at the patterns know the correct answer?
This is not exactly neural imaging, but hey, it was written in 1844.
The Count of Monte Cristo features an old man who can only communicate via eye blinks. At one point, he "spells" out words letter by letter by blinking a "Yes."
So, as lr4444lr implies, you could easily have someone "spell" out their birthplace. How does statistical reasoning enter into that?
> Some people like to use the salmon study as proof that fMRI is woo, but this isn't the case, it's actually a study to show the importance of correcting your stats.
And
> The original poster almost didn't make it to a conference, but when it did, it made a major splash, and reactions were very positive.
And
> The authors note that at the time the poster was presented, between 25-40% of studies on fMRI being published were NOT using the corrected comparisons. But by the time this group won the Ignobel last week, that number had dropped to 10%. And who knows, it might, in part, be due to a dead fish.
Sounds like the salmon study is evidence of a field with a healthy attitude and improving statistical techniques rather than one that should be seen as discredited.
Did you read your link?
I quote: "Some people like to use the salmon study as proof that fMRI is woo, but this isn't the case, it's actually a study to show the importance of correcting your stats."
Stories I can find about using fMRI to test for consciousness all have the same theme that it's promising, but that there are false positives and no definitive test that tells you for sure.
I'm also skeptical of the salmon study, and I would love to see replication results, because another alternative explanation is that, even after clinical death, the brain tissue may still weakly react to stimulis: the "fresh" fish would have been kept in ice due to chain-of-cold requirements (and humans can survive for 30 minute in hypoxia, and recover: https://abcnews.go.com/Health/hypothermia-save-boy-trapped-i..., turtles up to 6 month https://www.openaccessgovernment.org/survive-without-oxygen/...) and other tissues have shown similar feats (heart tissue in the same article)
Actually, it'd be sad, because for all we know, dead people could have this limited consciousness without being able to communicate, just like the coma patients!
> no one knows exactly how many vegetative-state patients there are in the world (in the United States, it has been estimated that there are between 15,000 and 40,000)
Last I read, Medicare would pay for this -- perhaps at the request of relatives in denial? And so there's a "ventilator farm" industry, one that maintains a very low public profile.
Anyone with current inside knowledge here to clue in the rest of us?
Louis Theroux has a documentary on it - Edge of Life I believe it is called (although Google says that’s about cedars Sinai so possibly not, but there is an episode he does that predominantly features room after room of ventilated patients)
I suffered an incomplete (cervical) spinal cord injury years ago.
Through my 'medical journey' and many many months in the ICU before rehab I was placed on a variety of amnesiacs, as well as induced comas.
I remember a lot of things that I really shouldn't -- and I can corroborate the events with eyewitnesses who were otherwise healthy spectators.
I was terrified, unable to communicate, uncomfortable, and most of the time in pain.
When I was finally brought back to 'real' consciousness I had tubes in every orifice, a new tracheotomy, a new HALO drilled into my skull, the inability to speak and the inability to move my arms -- through no ones direct fault my only means of communication , my voice , was taken from me while I was pharmaceutically inebriated and unable to consent -- an emergency action that was medically required.
I eventually regained enough upper limb movement to communicate with a small whiteboard and soft erase markers while in the medical facilities. When the trach was finally removed I regained most of my voice within months of therapy, but the memories and experience still haunt me.
I sincerely hope that we learn enough about human consciousness at some point to allow us to better manage patient awareness and memory forming through trauma -- I think that the medical industry as a whole kind of pushes 'medical PTSD' out of the public arena of consideration as something that is 'required, known, but terrible.' -- but I hope we one day come up with real methods of reducing or preventing that kind of experience all together.
It feels that at this point we're much more adroit at healing bodies than psyches.