Physician scientist here -- this is a unique and somewhat odd case where Martha prefers to use the iron lung over modern alternatives.
She would likely do fine with a modern non-invasive positive pressure ventilation (NIPPV) approach.
There are many patients with other illnesses (COPD, ALS, etc.) that depend on nocturnal ventilation -- most commonly nocturnal BiPAP (two pressure levels that support respiratory muscles).
I am sure she tried a CPAP or something better suited for her needs.
Maybe Sleeping with a mask on your face is more disturbing than sleeping neck high inside a machine. She definitely tried a face mask and determined this machine is better.
But most people on CPAP did not get the chance to try an iron lung.
So Maybe this is a chance to create a new product, any entrepreneurs here?
Personally I can't handle a regular CPAP mask. If I didn't figure out a way to make the nasal mask work for me, I'd probably end up ditching the CPAP altogether.
I wonder why this isn't mentioned anywhere? If she is worried about not having parts for the iron lung, it's more about her preference to use it than whether she can live or not, it would seem.
> "I've tried all the forms of ventilation, and the iron lung is the most efficient and the best and the most comfortable way," she told Radio Diaries.
At no point does it say that she can not use any alternative.
OTOH, it would be great if the journalist could take her experience and bounce it off an expert and report what they said. Otherwise it's just a biography.
Definitely. Imagine just trying to change how you sleep if you're a back or side or stomach sleeper. For most people that would be pretty difficult, I think. It seems like this is an even more dramatic change.
Difficult but hardly undoable. My dad didn't get a CPAP until he was in his 70s. Turned him into a believer, even though he had to relearn how to sleep. My father-in-law had to sleep in an easy chair after his bypass surgery, and then relearn how to sleep in a bed after that. So it may be difficult, but people do it all the time especially when it improves their quality of life.
I work in healthcare and see these machines all the time. They seem way less invasive then a giant metal lung and would not be hard to adjust to. I wish I had one for days when I am sick like with a flu they seem like they would make breathing much easier.
I have enough trouble with the face mask that I can appreciate how some people don't really adapt well to it. I can handle the nasal mask, but attempts to use the face have failed every time. They do help with colds, at least, they keep me from being stuffed up at night no matter what happens during the day.
Eh, there's a league of difference between "does fine" and "does well".
I'm willing to bet she's had many doctors suggest modern alternatives and that she's tried alternatives, not the least because iron lungs are generally not produced anymore so they're more difficult to maintain and can't easily be replaced.
However, if she truly prefers it and it's therapeutic and she's able to maintain the device... what's the problem? "This other thing is a newer treatment," isn't really a description of efficacy or appropriateness or therapeutic benefit or patient comfort or outcome.
Just because something is old doesn't mean it's bad. A treatment that's proven to be effective for 50+ years shouldn't be discarded out-of-hand because newer treatments exist.
Polio is one of those diseases that remind me we're not really taking SARS-2 seriously enough.
From Wikipedia's article on Polio:
> Up to 70 percent of those infected have no symptoms. Another 25 percent of people have minor symptoms such as fever and a sore throat, and up to 5 percent have headache, neck stiffness, and pains in the arms and legs. These people are usually back to normal within one or two weeks. Years after recovery, post-polio syndrome may occur, with a slow development of muscle weakness similar to that which the person had during the initial infection.
SARS-2 binds to ACE2 which is present everywhere in the body [1]. Loss of smell might apparently be a nervous system invasion. [2] Brain scans post COVID show brain matter reduction. [3] REM sleep seems to be disturbed in 4 of 11 long covid patients. [4]
We've stopped taking this thing seriously with potentially disastrous consequences
I won't argue you needn't worry about long term covid effects but I don't think comparison with polio does much to support that. Polio was known to cause paralysis in some patients since antiquity while covid is essentially a completely new disease that we just don't know that much about yet.
Considering the global reaction to Covid, it is extremely serious. Anymore and we’d all be living under Beijing style lockdown and traffic light system
Bars and clubs in many cities are open and basic infection control measures are not being taken or enforced by significant percentages of staff and patrons alike.
We enforce the laws against smoking indoors more diligently
and stringently than we do removal of masks in crowded areas.
If you take issue with this generalization, then you should also take issue with the parent comment's note that 'we' aren't taking it seriously enough.
Some people, cities, states, are being extremely cautious. Some are not. I moved from Bay Area California to bum fuck Florida during COVID, and it's like being in a different timeline.
There isn't a single country with 100% vaccination rate, I highly doubt there will ever be. Trusting that the definition of "public weal" won't change once given such power is naive. I wish it worked that way.
Again, what I'm telling you is that the government already has extraordinary power to take away your freedoms. Look into American incarceration rates for instance. The bad part of government power I'm supposed to be worried about is already here.
And Im in favor of banning video games, social media and pornography.
Btw, what do you plan to accomplish by assaulting people who don't want it?
The virus isnt going away no matter how draconian you get. Just for fun, imagine forcibly vaccinating Afghanistan. Or Central Africa. Not happening. Not without an army (one that can win wars, America’s doesn't count)
> And Im in favor of banning video games, social media and pornography.
Those are quite bad analogies you have there.
Playing video games, reading/posting to social media (assuming you're not posting content inciting violence etc) and watching pornography (or producing pornography, assuming consent of all involved) are not actions that have any significant potential to cause harm to others. I don't mind if somebody spends their entire day jerking off with their left hand while playing video games with their right, all the while posting to Twitter via Siri. I wouldn't personally want to be that person(or follow them on Twitter, for that matter), but it's their life and they're not hurting anybody.
Socializing without taking proper COVID precautions however puts other people at immediate risk. Getting vaccinated is one of the precautions we can take to avoid that, and it has been shown to be tremendously effective. It is also very quick, and very low risk for healthy adults. So it is our social responsibility to get vaccinated.
FWIW, I'm OK with people choosing to not get vaccinated for whatever batshit reason they may cite. Their body, their choice, right? But my body is not their choice. So if they choose to commit to endangering myself and other responsible people, and potentially contribute to overloading the health system we rely on, then I also expect them to accept the necessary consequences: minimizing social contact, getting COVID tests whenever they want to enter any establishment, potentially having to look for a new job that can be done 100% from home, and waiving their right to be treated for any COVID infection they may contract while unprotected.
Yeah, the only downside is increased death; continued disruption to the economy and everyday life for everyone, not just the refuseniks themselves; and continued strain on the medical system for no good reason. Otherwise, letting things run their course is just as good.
> Btw, what do you plan to accomplish by assaulting people who don't want it?
Endemic status of the disease, pretty obvious. It's still around but doesn't disrupt daily life that much, like other respiratory illnesses we've had to deal with all along. Curiously the people least willing to take the vaccine seem pretty confident in their ability to shut the border, but having a relatively porous border isn't actually that much of an issue with 100% vaccination.
Thats not what endemic means. Endemic means regularly found. The virus is already endemic throughout the world.
Either way these vaccines will not accomplish your stated goal. The vaccines wear off too quickly. The virus bifurcates too quickly. With Pfizer talking about the need for quad shots, you cant manufacture enough vaccines for the world in the various variants present.
However, forcibly injecting people (legal assault) with the vaccines will create a very angry, motivated, minority. A recipe for a society to descend to hell.
If you're paying much attention, they're using "endemic to refer to a managed, "steady state" of the disease, comparable to other infectious diseases, as opposed to the current, crisis level it's at.
The claim about the vaccines "wearing off" does not seem to be true. Compelling immunization also does not, in my view, constitute "assault," and I don't care if it makes people upset, something you could say about almost any policy imaginable.
So they should use the word “managed”. Endemic has a very specific meaning.
If you haven't seen the push for boosters, seasonal shots, etc then you’re not paying attention.
As to assault, you’re right. Legally, the sovereign cannot assault (not even MBS in SA). that being said what the sovereign is doing easily falls into the common law definition of assault:
“An intentional act by one person that creates an apprehension in another of an imminent harmful or offensive contact”
Note the words “offensive”, “contact” and “apprehension”. As my lawyer friend once explained to me, merely touching someone’s arm who you know doesn't want to be touched is assault.
A vaccination necessarily requires that a needle purposely touches, pierces, and injects a foreign substance into another.
If unwanted it constitutes assault, except that the state (as the BLM folks, thankfully, explained last year) has sovereign immunity.
We shut down the economy, forced everyone to stay home, made everyone wear masks, warp speeded multiple vaccines, and still make people wear masks at the doctor and the post office. The world has to keep turning at some point.
People value things differently. There's people who bristle at the idea that the government should coerce them into getting unwanted medical procedures or restrict their movement. There's people who don't believe governments who have badly and repeatedly bungled the response to covid are a reliable or trustworthy authority on the matter.
Not everyone may take covid exactly as seriously as you would wish them to, but it doesn't mean they don't take it seriously just because they value other things more. People going out en masse to protest police brutality for example apparently understood the risks of covid but believed their cause and their right to protest it to be more important. Who are you to say they are wrong? People who understood the risks but believed border closures to be wrong or racist believed that cause was more serious than covid, again who are we to say that's wrong? Do we have some ivory tower of government experts who are there to provide us unthinking plebs with the canonical guide for ranking everything in seriousness and importance?
If we had the government telling us that driving automobiles causes a million deaths every year and the only way to solve it is for everyone to stop driving, but maybe we can start driving again after everyone's cars have been fitted with modifications to limit speed to 5mph which should be at least 90% effective at eliminating hospitalizations and deaths, then they're not exactly _wrong_, but of course people are going to protest it. If you drove anyway that does not mean you don't take automobile accidents seriously, that you're anti science, or that you're a grandma killer. You will certainly statistically increase the load on the hospital system if you drive, that choice does not make you responsible for possible deaths of other people who could not access sufficient medical treatment. Not even if you just went for a drive to the beach, up a mountain, or an aimless drive through the streets just because you enjoyed it.
It's 30-40,000 automobile deaths a year, which is bad enough.
If it were a million, I certainly hope the government would step in. And if you drove anyway, illegally, knowing that it caused a million deaths a year, it would reveal you to be an anti-science grandma killer, yes.
I was talking global but sure in USA 40,000 per year. So an ongoing disaster of a far larger magnitude than covid all told, which is only 20 years worth of automobile deaths so far.
So my point stands for USA as well. And we're generally not talking about crimes here, we're talking about people deciding not to wear masks, not to get vaccines, or to attend events or go about in public or go to work perhaps against advice of experts, but not breaking criminal laws.
And who are you to be the decider of what exact number is acceptable or not? Who are you to say 40k/yr is okay? Some people surely believe that's far too many, so are you an anti science grandma killer for driving? No. Neither is someone who doesn't get vaccinated, doesn't wear a mask in public, and doesn't shut themselves in their homes and avoid going out in public.
Can you not see that people can have different thoughts and values, assess risks differently, or have different opinions on the trustworthiness of government advice, without being evil boogymen?
"So an ongoing disaster of a far larger magnitude than covid all told, which is only 20 years worth of automobile deaths so far."
I'm sorry, this sentence makes no sense. 40k annual auto deaths is of larger magnitude than 400,000 annual covid deaths? Are you saying that auto deaths are a more serious phenomenon because covid is . . . new?
I certainly think 40,000 auto deaths is far too many. I would love to see the government step in with safety measures, as some levels of government have done for covid. We have indoor mask mandates where I live, as well as vaccine mandates for a number of public-facing job categories.
People certainly have different thoughts, and sometimes those thoughts are muddled.
No, I'm saying covid in the US has caused about 20 years worth of auto accidents, and with vaccinations and natural immunity and the pandemic running its course, it's not likely to reach the scale of the ongoing automobile disaster, which has been over 20k/yr for about 100 years and total might have killed about 3 million people and will continue to kill tens of thousands of people very year for many years to come.
If covid does somehow reach that scale, then automobile deaths is still a perfectly valid comparison to use.
And so my point stands. People aren't monsters, evil bigots, anti science or grandma killers for choosing to drive places, even though statistically that will result in increased deaths and increased load on the hospital system. They would also not be any of those things if they protested government bans on driving.
I'm repeating myself though. If you simply can't accept that anybody could reasonably have a different opinion about things than you without being anti-science or evil or stupid or bigoted, I don't think you'll be able to understand or accept my point.
I'm not sure driving is a great analogy to taking/not taking a vaccine or refusing to follow COVID restrictions, but if we do, we also need to consider this:
When driving, you can exercise caution and attempt to minimize the risk of an accident. I'm not from the US, but where I'm from you're also legally obligated to do so - if I drive and hit somebody, and it turns out I did so because I was going too fast or not paying proper attention to my surroundings, I will be held responsible for their injuries and damages.
Further, there are laws stipulating what safety requirements newly sold cars have to meet: again, this may vary by country/state etc, but fairly common requirements are having an air bag and seat belts (which you are legally obligated to wear where I'm from, and you will be fined if you do not).
I would say that the rules governing driving can be considered analogous to those governing social distancing, masking etc. And the safety guidelines for car manufacturers can correspond to vaccine mandates.
Of course you are free to refuse to follow driving rules, but the only legal way to do so is to refuse to drive a car entirely. Just as you can be responsible and stay at home and avoid contact with anybody as much as possible if you refuse to be vaccinated.
Driving is a fine analogy in my opinion. It doesn't have to be 100% exact identical to the other situation to be able to explore the idea and consider different perspectives on the argument.
Not wearing masks or shutting down the economy for the flu and common cold, obesity, driving cars, extreme sports, and more are all great analogies you can use to explore logical consequences of various measures or lack of measures being advocated for dealing with covid.
Maybe gun violence is the best analogy, as it is a situation where people's preferences and convenience are given priority over thousands of other people's lives.
Maybe. I think automobiles is better because preventing driving prevents automobile deaths, so there is a pretty reasonable case to make that it is a necessary and sufficient measure to end deaths from car crashes. Pretty hard to rebut the automobile analogy, isn't it?
Gun violence is illegal and quite significantly committed with illegally obtained guns and particularly pistols. So banning or increasing legal controls on rifles (for example) would not be an evidence based policy for reducing the largest sources of gun violence. Unless you are drawing parallels with the relatively low effectiveness of vaccines, but even then I don't think vaccines are quite that bad :)
Obesity too. As well as the injury to the sufferers, load they put on the hospital and healthcare system, and wider society is just staggering. Hundreds of billions, or about 20% of annual medical spending in the United States is due to obesity.
And yet I would never ever advocate for restaurants to demand BMI licenses for service, people denied jobs or freedom to travel or freedom to buy and eat the food they want to combat this, or forced gastric surgery "for the greater good". It would be horrific and inhumane.
If you could transfer your obesity and smoking habit to me by being too close to me at Target it would be a good comparison. Kill yourself however you please by all means.
Transmission according to the CDC involves prolonged close contact. Not very likely that you are going to catch it by a random choice encounter at target
No, obesity puts a huge load on the hospital system and therefore deprive others of health care. This is one of the arguments used to bully people who don't want to be vaccinated.
Yep, people seem to forget history. The polio vaccine had issues when it was rolled out in 1955. No one bats an eye taking it today because it saves lives.
I remember before covid, Marin county was the antivax central, with mostly wealthy hippies that refused to give smallpox and measles vaccines to their kids. They had measles, whooping cough, all those old diseases.
At Greenwood School in Mill Valley, 61 percent of the kindergartners are partially or completely unvaccinated, according to state figures. At San Geronimo Valley Elementary in San Geronimo, 58 percent of the kindergarten children are partially or completely unvaccinated. Half the children at the New Village School in Sausalito are in the same boat, according to the health department.
You've been breaking the site guidelines a ton - posting flamewar comments as well as routinely being snarky and aggressive. This is not ok on HN. I've banned your account until we get some indication that you intend to, and will, follow the site guidelines in the future. They're here: https://news.ycombinator.com/newsguidelines.html. If you review them and decide that you want to actually follow them, you're welcome to email us at hn@ycombinator.com.
I understand your sentiment, around people treating different diseases differently, but I am also not so sure that comparing polio and SARS-CoV-2 makes sense. Polio created a lot of psychological fear due to the graphic imagery of children dying or becoming permanently deformed. The WHO says (https://www.who.int/news-room/fact-sheets/detail/poliomyelit...) that 1 in 200 infected with polio experience irreversible paralysis (usually the legs), and 5-10% of those with paralysis die, meaning the IFR was 0.025%. The IFR for COVID-19 is incredibly low for those under 50, as most of the deaths impacted senior citizens. Even the CDC's conservative planning scenarios (https://www.cdc.gov/coronavirus/2019-ncov/hcp/planning-scena...) use a planning IFR for minors of 20 in 1M infections (0.002%) - which is an order of magnitude less than polio.
The side effects you called out (like loss of smell) are rare to begin with, subside over time for most people, and aren't as serious as having to live on an iron lung. Additionally, it isn't clear if "long COVID" is even a real thing or just a casual/imprecise term for the unknown. My speculation is that many illnesses like the common cold have similar side effects, but we're only now rigorously studying and measuring them because of the prominence of COVID-19 in the public's mind.
I would also point out that there are potential consequences from a lot of things we've done in response to COVID. Limiting social interaction, hiding faces/emotions, reducing oxygen intake via masks, normalizing government overreach, hurting the economy, keeping children out of schools, and so on can have impacts we don't yet understand. And then there's the potential for vaccines to have some kind of long-term side effect of their own. My sense of the probabilities and risks is that it is preferable to take the vaccine, implement some basic hygiene protocol, and avoid the worst of it. But I also feel there is a fairly wide spectrum of reasonable choices and policies in this situation.
I'm also not sure what you're expecting in terms of taking it "seriously". COVID is going to be endemic. Everyone will be exposed to it over time. In terms of government intervention, I don't think it ever made sense to do more than 'flattening the curve', and even that was perhaps a step too far since those who are healthy and under 50 can more or less treat COVID like any other common illness. It may have even been preferable for that group to simply contract it and build up antibodies so that others who are more vulnerable could re-enter society with a lesser chance of transmission.
Not sure if 20% (at least for the original strain) qualifies as rare. And, it doesn't matter if it goes away after months, the question is - is there long term neurological damage from that process.
> reducing oxygen intake via masks
This is not true. Breathing is more difficult but oxygen intake is the same. Especially for n95 designs which have really tiny volume
> I'm also not sure what you're expecting in terms of taking it "seriously"
I mean that there is real chance of serious brain damage and long term consequences due to neuroinvasion. Instead we're thinking of COVID as if its the flu or cold.
> My speculation is that many illnesses like the common cold have similar side effects, but we're only now rigorously studying and measuring them because of the prominence of COVID-19 in the public's mind.
And this is precisely what I mean - its in the general mindset to treat SARS-2 like the flu. We think flu, we think fatality rates etc - we dismiss long term consequences, we dismiss long covid brain fog as psychological. I think that's a fatal mistake. It may not be Polio exactly, but it should be placed at similar distance from the flu in our minds.
The writing is all over the wall, but we're in optimistic denial, trying to cope, grasping at any (sophisticated) potential straws.
We can split hairs about what constitutes "long-term" and what doesn't, but if I can't smell anything for a year - not knowing for sure if I ever again will be able to - I'd consider that pretty devastating.
The point is that there are basic steps (vaccination being one, but not the only) that too many people still refuse to follow that can spare many people from having to wonder if they will ever be able to smell again (or worse).
> We can split hairs about what constitutes "long-term" and what doesn't,
Pretty easy to define. Long-term = chronic illness. There are tons of such conditions around. Rheumatoid Arthritis, Psoriasis, or even viral infections with flares that never go away for the lack of good cures. 1 year is nothing.
> too many people still refuse to follow that can spare many people from having to wonder if they will ever be able to smell again (or worse).
What a ridiculous position to have. You also have a simple way to avoid STDs, is to never have sex in your life ever again. If you want to avoid risks at all costs, you don't have a life anymore.
> Pretty easy to define. Long-term = chronic illness.
Not that easy. If I'm unable to exercise for a year due to COVID complications, that is a major life changing event and has long-term impact. Does it have permanent impact on my health? Maybe, maybe not, but certainly enough that I want people to take this shit seriously.
> You also have a simple way to avoid STDs, is to never have sex in your life ever again.
Fortunately I don't have to, because we have condoms. Do you see where I'm going with this?
The amount of insinuations, accusations and anti-American/tech/white/male/journalism sentiments packed into such a small thread is incredible.
It's a news story about a health patient, yet Naomi seems to expect NPR to act as Martha's personal insurer and care advocate. Would it have been better if NPR didn't publish it at all? Then Naomi would never have been given the chance to virtue signal for exposure. Lose-lose.
Naomi Wu has had poor experiences with western news outlets - Vice news outed her against her will in a piece they wrote on her, and she lives in a country that doesn't have an especially liberal attitude towards homosexuality. So there is understandably some salt on that basis, but also...
As far as "tech/white/male", you really only have to read the comments people post in any thread about her on Reddit to figure that one out. I can't even imagine what her inbox must look like.
Especially since for anyone reading the article it's clear why she's (rightfully) annoyed.
> She has only a handful of collars left. "I really am desperate," she says. "That's the most scary thing in my life right now — is not finding anybody that can make those collars."
Naomi does a lot of interesting work and is snubbed quite a lot. She made it quite public that this was happening and yet NPR still snubbed her.
She has the right to be annoyed with those that were supposed to deliver and test the collars, not with Martha Lillard or NPR.
From the point of view of M.L., she is maybe one of several that promised to help but could do it (not a fault of Naomi Wu of course, but of those that first contacted her for help and then left things unfinished), so it doesn't surprise me that she was not mentioned.
NPR asserted in their article that help was few and far in between when this wasn't the case. Naomi has certainly gone above and beyond in attempting to help. It should be noted that the difficulty is not in finding help, but in the logistics. It reads very much like a plea to emotion, how NPR worded it.
I mean there's also plenty of other options, like the parts didn't fundamentally work and it's easier to just forget about it and write a new article than risk another media blowup by bringing a Twitter personality into a story that's not really about her?
That makes absolutely no sense, Wu is in china so some back and forth in order to get the collars to fit correctly is to be expected. Following which you're done because the chinese shop can make the collars to order whenever that's needed.
> bringing a Twitter personality into a story that's not really about her?
Wu was already involved in this. Per her comments she'd already sent packages of collars to be tested and altered / fitted.
Hell, mentioning that there was a volunteer / grassroots effort to produce new collars would have been more honest than the article going "collars where?"
It's a light human interest story, not a comprehensive international assessment of iron lungs parts suppliers or formal inventory and provenance check of Martha's stock.
A brief retrospective of iron lungs and the technical difficulties faced by people who still prefer them is among the least sensationalist pieces of writing I can imagine. Where you normally get news that's so sedate by this standard?
That makes absolutely zero sense, though. She's also not a twitter personality. She's a full-blown engineer with a very popular Youtube channel and following and has done these sorts of things quite often.
A Professional Engineer certification can mean "We trust you to work on things where human lives may be at stake". Gatekeeping engineers use this to exclude everyone else. If your screw-up doesn't cost human lives then you're not a real engineer.
Please do not post in the flamewar style to HN, regardless of how bad another comment is or you feel it is. We've had to ask you this multiple times before. That's not cool.
We're trying to avoid this kind of thing here, so if you'd please review https://news.ycombinator.com/newsguidelines.html and take the intended spirit of the site more to heart, we'd be grateful.
That article is from a previous donation years ago. Naomi herself says her recent donation wasn't used[1].
Is NPR obligated to mention all failed attempts to acquire new collars? It seems unlikely they excluded this information because of Naomi's gender or race.
It's great that Naomi donated successfully before and has tried to again, but as you noted she's received plenty of positive media from her donations already.
Because real hackers are unwashed, unshaved and live in hoodies?
As a community we are not really a suit and tie sort of affair. Whether that means a bikini, a nice cotton henley or your favorite cyberpunk cosplay - who cares?
The comment that I replied to said that she has a valid point being anti-male because she receives so much unwanted attention. And my reply is that I believe the sexualized attention isn't unwanted but instead it's part of her marketing strategy which includes - among other things - the "sexy cyborg" branding and 18+ videos.
In a similar vein, if I wanted to make a YouTube channel that appeals to true hackers, I might stop shaving and showering for a few days and wear the hoodie. That sounds like a great marketing strategy to stand out from the boring suit & tie crowd ;)
"In general we need to take people at their word and not supply our own beliefs"
You will have a difficult time navigating the real world if you approach public personas with such a trusting approach.
"I just want you to know I’m not a pedophile" Jeffrey Epstein
"I did not have sexual relations with that woman" Bill Clinton
"I'm a benevolent dictator." Harvey Weinstein
In my opinion, Wu is a public persona, too, because the majority of her income directly depends on the public's perception of her. Also, her influencer marketing with the Creality printer brand is probably conditioned on her presenting in a certain way. So regardless of whether she dresses that way for guys or for girls, I'd argue that my point still stands: She made a calculated decision to publicly present herself in that way and given that she appears to be highly intelligent, she was probably aware of the consequences (including male attention) beforehand.
There's a reason I prefaced with the word "generally" but you can replace that with the longer "Lacking evidence to the contrary".
In case this hasn't been explained to you yet: Someones fashion choices are not an excuse to behave inappropriately or give them unwanted advances. If she wants to dress that way and someone behaves inappropriately towards her, the issue isn't with her.
Having that name and wearing the bikini means that much of her popularity will be because of sex appeal, with relatively little being because of the merits of her actions or her writings. As this is Hacker News, not Virtual Idol News, this absolutely means that anything about her that is related to her actions or her writings should be viewed with the utmost skepticism.
Also, calling herself sexy and wearing a bikini is specifically aimed at males, so no defense of her should include the phrase "white male". Of course most people paying attention to anything she does are male--she's doing that deliberately!
She’s explained many times how the gay and lesbian scene that she identifies with works in parts of Asia. I think she’s sincere as she’s mentioned her relationships on Twitter. She’s not appealing to males. She’s appealing to specific types of lesbians.
I think this part of her complaint with western media is legit. They all just assume that she’s doing it for the views. Ignore the gay and lesbian scene in Asia entirely to come up with a fake narrative. Completely ignore that she has done some good work just because of the way she looks. Then go on and on about inclusivity and LGBT rights.
Even Adam Savage’s Tested.com seems to have snubbed her. They requested a few CR-30s be sent over for review but then <some shenanigans> And the review never came and I guess they never sent them back to her.
Calling yourself "sexy" and dressing in a bikini appeals to males, and males greatly outnumber lesbians, and that will lead to lots of male twitter followers who would not follow her if all she had were her actions and words. She can't not know this stuff.
You can argue that she isn't deliberately appealing to men, but at some point, "in the knowledge that" is indistinguishable from "deliberately" by anyone who can't read minds.
I’m sure she knows that her appearance has a massive overlap with male fantasies and that affects her followers.
But what does that have to do with the work she does? And why is that her problem?
Given the snubs she’s received, I’d argue that her appearance actually costs her. If she looked more like the western ideal of a female lesbian hacker she’d get more work and sponsorships.
>But what does that have to do with the work she does?
She's doing something that makes it look like she's gaining fans for reasons unrelated to the quality of her work. People will be skeptical of the work of a person who trades on something other than her work.
Skepticism is one thing. But it certainly appears that she continually gets snubbed.
After all this time the media, popular personalities, maker communities that espouse inclusivity didn’t once look at her work? Got the first mass produced Infinite Z printer to market - still skeptical? Got Chinese companies to comply to open source licenses - still skeptical? Makes a bunch of stuff - still skeptical?
Naomi certainly does seem right that all these communities are judging her on her appearance.
> Also, calling herself sexy and wearing a bikini is specifically aimed at males
Women who are attracted to women exist. It's possible to think that yourself is sexy without desiring external attention. What you're doing here is projecting and victim-blaming.
> Having that name and wearing the bikini means that much of her popularity will be because of sex appeal, with relatively little being because of the merits of her actions or her writings.
I think that honestly underestimates the amount of work that goes into being a consistently successful tech-themed content creator: Wearing a bikini isn't enough to brave competition and short-lived attention spans in that space. Being attractive helps in media, for sure, but you can't go on without putting work into the essential content for very long.
Last time I wore a bikini I was at an all-women's conference. I thought I was wearing it because it was hot, I was in Palm Springs, and I was at the pool. Thank you for telling me I have been doing it wrong. No wonder I was underpaid at the time....
GP: "The amount of [..] anti-[..]white/male sentiments packed into such a small thread is incredible"
P: "you really only have to read the comments in pretty much every thread about her to figure that one out. I can't even imagine what her inbox must look like."
And to P I'd like to reply that I agree with GP: It appears to me that she has voluntarily joined fighting the anti- white/male fight.
> yet Naomi seems to expect NPR to act as Martha's personal insurer and care advocate.
No. She expects a reputable news outlet to fact check their own story, especially since they covered most of the same information the Wired article did 4 years ago - which, naturally, mentioned Wu.
Fact check doesn't seem to the right phrase here. Naomi donated collars years ago. Each collar lasts "a few months". Martha has a "handful left". Martha hasn't been able to find additional collars. What facts did NPR get wrong in the article?
There could be all sorts of reasons NPR didn't mention Naomi. How did Martha get the collars before Naomi's donation? How many years of collar donations/purchases is NPR obligated to mention in their article? Is there anyone else outraged they didn't get mentioned for providing collars years ago?
> It's a news story about a health patient, yet Naomi seems to expect NPR to act as Martha's personal insurer and care advocate.
No I think Wu just expects [0] NPR not to ignore relevant facts to construct a misleading narrative.
> Then Naomi would never have been given the chance to virtue signal for exposure.
Naomi Wu is hardly lacking in exposure opportunities or the ability to exploit them, so even if the basic false dichotomy you propose wasn't false, it wouldn't really be lose-lose for NPR and Wu. (NPR and Martha maybe, since the exposure, even starting in the misleading form NPR presented it, does probably make it more likely that her issue gets resolved, but that's where the false dilemma comes into play, since the story didn't actually have to be misleading.)
[0] in the normative, but emphatically not the predictive, sense of the word.
Naomi Wu really hates western journalists and tech-bros, and justifiably so. She's been doxxed, accused of being fake (they think her partner does all the work and she's just his model/actress), etc.
So yeah, she has a humongous chip on her shoulder, and maybe she gets carried away with that anger, but the chip on her shoulder comes from some legitimate grievances.
Regardless, she has a lot of respect in the maker space because she's one of the few people who says "oh yeah, we can jump in and come up with help for this medical/prosthetic problem" and doesn't half-ass it. She's very specific about that - this is one of those cases where Minimum Viable Product is unacceptable, these items need to stand up to real life and 24/7 contact with human skin.
> And of course- when someone does something, but they aren't the right kind of someone let's pretend her name did not come up at the top of the search when you fact-checked this story right @NPRHealth
? Just say you want a straight white American tech bro to do it.
NPR is rife with bias, if you know how to look for it. I recommend reading Propaganda by Ed Bernays & then thinking about why the people who make huge donations to NPR make those donations (IMO, it's because NPR largely exists to reinforce the existing social structure).
You're making sweeping general claims about the media which I agree with, but I'm asking specifically about this story. To the extent I would classify NPR as propaganda, it's (currently) for a particular half-progressive/half-third-way American liberalism that would love to have a story about a scrappy DIY global supply chain saving someone in Oklahoma.
ETA (since I'm rate-limited...):
> Do tell us more about NPR's liberal bias.
Sure. By telling these kind of fables about how global capitalism is actually good for everybody, they're trying to prevent growing class consciousness that would eventually force fundamental, revolutionary change to how we allocate resources.
Oh wait, you thought I was to the right of NPR? Sorry, no, that probability distribution is barely distinguishable from Nazism at this point. Also no one to the right of NPR would ever use the term "third-way" in criticism of it.
>Sure. By telling these kind of fables about how global capitalism is actually good for everybody, they're trying to prevent growing class consciousness that would eventually force fundamental, revolutionary change to how we allocate resources.
YES. I love NPR as a news source, because of the oddball stories they cover. But they are solidly, solidly in the 'bootlicker' camp when it comes to how great and exceptional international businesses are at solving humanities problems.
I like NPR as much as the next person, but it is often used as a propaganda tool, so I think it's valid to question the underlying reasons behind publishing stories and the slants they take.
Given this, I think it's fair for Ms. Wu to have a hot take on this.
Highly recommend reading Propaganda by Ed Bernays. I saw it recommended on HN years ago, so I bought and read it -- it really helped make me a smarter consumer of news.
> She has only a handful of collars left. "I really am desperate," she says. "That's the most scary thing in my life right now — is not finding anybody that can make those collars."
How do you fact check whether someone can find something?
Their inability to find something doesn’t mean it doesn’t exist. It just means that she personally can’t find them.
And the collars didn’t necessarily work either. They were shipped, not installed/tested. So the problem doesn’t seem to have been solved.
> How do you fact check whether someone can find something?
Looking at the top google hits and previous stories on your subject[0] seems like the bare minimum fact checking to do?
> And the collars didn’t necessarily work either. They were shipped, not installed/tested. So the problem doesn’t seem to have been solved.
Seems pretty logical that they'd have to be refined given they're made and shipped from china with no access to the iron lung or ability to travel back and forth personally. That's something the NPR journo could actually have assisted with.
> That's something the NPR journo could actually have assisted with.
That's not the job of the journalist! Are we to expect our journalists to solve the problems they report on? Should every story also turn the journalist into an advocate - be it legal, healthcare, employment, etc. - that works on their behalf?
I think there's room for critique here though the "assumption of bad faith" runs rampant in this discourse already. Yet critiquing the reporter for not acting as their personal local news network "Problem Solvers" segment isn't the real issue here.
I disagree. That Twitter thread is a terrible look for the people participating, but NPR comes out of it looking fine. They reported the situation from Martha’s perspective. If Martha is worried about being able to find collars why would it matter that some completely unrelated people on Twitter think they already solved the problem? Makes no sense.
The textilist seems to be accusing NPR of not mentioning her, but Martha herself said she couldn't find anyone to make them. Was @RealSexyCyborg in contact with NPR? Or Martha? If anything, it seems the article itself is meant to encourage someone to provide the help that @RealSexyCyborg admits she needed someone else to do. How many others were contacted by Martha but couldn't produce the product at the end? Does each require an explicit mention?
Then the accusation that this effort was omitted because she wasn't a white tech bro is out of left field and frankly, very unlikely. NPR regularly goes out of its way to provide viewpoints and credit well outside the "white tech bro" sphere.
I don't know what research was done but it looks like @RealSexyCyborg had made some and shipped them in 2019... as well as making a YouTube video about it.
Seeing as this is a 2021 story, either Martha did not receive the parts, the parts needed a revision or they did no research.
If the parts needed a revision, you would expect the story to say something like 'an entrepreneur has been working with Martha to create replacements but they are having trouble with final fitment.'
The article:
She has only a handful of collars left. "I really am desperate," she says. "That's the most scary thing in my life right now — is not finding anybody that can make those collars."
Makes it sound like noone has tried to do anything. So that leaves someone who has tried to help with the feeling that they are being ignored either by malicious or incompetent.
I don't think that Twitter thread presents a good look for anyone.
There is no timeline or context given here. So I don't know who this person is, and what direct interaction they have or haven't had with person in that article. All I can see is that this is a YouTuber, with ~2k Twitter followers and the tagline "It's all about merit until merit has tits". Who is "working on it", but hasn't shipped the parts yet. And who feels that NPR (who probably doesn't know she exists) deliberately cut her out because she's "not a straight white American tech bro".
To me, that thread is Twitter in a nutshell. Off the charts narcism and self-promotion, revolving around race/gender-charged drama. There may be some information that I'm missing here. But if you're starting from a place of NPR being too right-wing or bigoted, then I've seen enough.
Twitter is a shifty way to present information and to talk.I looked around and found out that she sent some collars in 2019. She also made a YouTube video of what she was doing at the time https://youtu.be/4VKZTmTP7oY the video shows up if you search 'Martha Iron Lung' so it's not like it is hidden...
You nailed it. Twitter is filled with a lot of interesting content, but the dominant "trending" topics are basically navel-gazing activists masquerading as journalists obsessing about their own identity (if they are in a favored group) or desperately using some sacred cow identity group as a tool to gain status with their peers.
I deleted my account after I simply asked a question one day in a thread with a prominent startup founder who happened to be a Black woman. Someone else on her thread had stated that she was worried about encouraging her daughter to learn to code because she felt that nobody would hire her "due to the extreme racism that was obviously prevalent in tech." I simply stated that my company was trying hard to hire folks like her daughter, and asked what we could do to make people like her feel welcome and understand that it wasn't a problem at our company. Then the veil was pulled back on the performance. The questioner didn't really have a question. She simply posed it as a performance, and then I was mobbed with statements telling me that I needed to "Listen and let Black women speak." These narcissists aren't interested in solutions, only in gaining status in their silly, secular imitation of evangelical fundamentalist churches. Replace "Satan" with "toxic whiteness" and you have Dana Carvey's church lady on SNL in the 90's.
> But if you're starting from a place of NPR being too right-wing or bigoted, then I've seen enough.
I agree with your assessment of Twitter being mostly self-promotion and race/gender-charged drama, but no-one said "right-wing." I don't think an accusation that any media outlet cuts out facts that don't fit their narrative can be dismissed out of hand these days, unfortunately. I don't have a strong opinion about NPR, but I can see how Naomi _might_ not fit in the narratives they try to push. But I acknowledge that I'm being a bit intellectually dishonest, I'm not bringing any evidence to bear here either.
Here's a fascinating and inspiring article about a man who is confined to an iron lung who is an attorney and uses his computer while in his iron lung:
Sadly I don't think facts help these people change their minds. The opposition is rooted generally in perception and not truths. Anything can be rejected this way.
My grandfathers brother had polio and was crippled for life.
I always remember how my grandparents talked of vaccines having seen the effects of polio and smallpox when they where growing up. They considered vaccines a modern miracle and could not imagine not getting them.
I’ve heard the theory that people are much more hesitant to get vaccines now because they’ve never seen the terrible diseases due to the success of vaccines in the past. Sort of tragedy due to success.
Thats my take too just based on talking to my grandparents vs anti-vax friends.
The anti-vaxxers just have never experienced the direct impact of a crippling but now easily preventable disease and what life was like before modern vaccines.
However they are looking to blame something for an autism spectrum kid ignoring the obvious which increased and broader diagnosis along with having kids older than previous generations.
No one wants to blame themselves understandably, so vaccines are a good scapegoat and not getting them is less risky now days due to the diseases being nearly eliminated so it all works until these old diseases come back, which they have.
Interesting. The vaccines got us to a world where it's rare that bad things happen - to the point that we kind of think that nothing bad should ever happen. But when something bad happens (autism), they blame the thing that got us to the point where bad things are as rare as they are.
In the case of Polio there is actually Vaccine derived poliovirus VDPV[2], the person getting the vaccine is immune, however he can transmit it to un-vaccinated people for the OPV version which was administered in the U.S. till 2000
OPV is known to cause paralytic poliomyelitis(polio) in 3 cases per million doses given [3]
If they weren't shielded from liability, would there be any company willing to take on the risk of administering the vaccines to 92%+ of the population (US polio vaccine numbers via CDC)?
They're shielded from liability because we as a society have determined that the benefits outweigh the risks with all the currently recommended vaccines, and that the companies that develop these vaccines shouldn't be punished for creating a massively net-good for society.
> If they weren't shielded from liability, would there be any company willing to take on the risk of administering the vaccines to 92%+ of the population
Absolutely yes. Every other industry is exposed to the risk created by their products - including makers of cars, heavy machinery, drugs, food, beverages, and airplanes - and continues to sell their products. There's no airliner deficit because the major companies are scared of the potential liability resulting from a crash, or beer deficit because major breweries are averse to the risk of a bad batch poisoning hundreds of people.
The claim that vaccine companies are somehow different than car companies, or drug-makers (who you can argue have also "created a massive net-good for society" - which is also a bad argument), or every other industry, is extraordinary, and requires extraordinary evidence.
> we as a society have determined
Objectively false. There has been no general vote on this issue, there have been no politicians that ran on platforms around this issue, and most of the individuals that I know do not support this decision - in fact, as far as I know, the only inputs into the legislation were from pharmaceutical companies, which is the opposite of "society". This claim is absolutely absurd, and equivalent to arguing that "we as a society have decided that personal data mining for the purposes of advertising is OK" just because that's the way the legal system is currently set up.
> the companies that develop these vaccines shouldn't be punished for creating a massively net-good for society
This is a snuck premise. This is no "punishment" at all for developing vaccines, and no one is forcing these companies to create or sell them; this is forcing them to ensure that their products are as safe as humanly possible by providing financial incentives to do so, which not only happens with every other industry, but is the only sane thing to do - if you sell something that people put into their bodies, there is no argument that you can make that you shouldn't also be liable for any negative consequences that happen as a result.
You can make an argument that cars, or antibiotics, or phones, or cheap+healthy+readily-available food have all been beneficial for "society" - and yet, the makers of all those things are equally liable for bodily harm arising from (proper) use of their products.
Moreover, forcing manufacturers to be liable for their products has been a net good for society, as its forced them to invest significant resources in ensuring that the things that they build are safe. Consider the high standards for food safety that we have now, and the incredible amounts of testing and safety engineering that go into building automobiles and airplanes - if manufacturers weren't liable, none of that would have happened. More concretely, if vaccine manufacturers were forced to take responsibility for their products, and there were actually high numbers of long-term side effects - the manufacturers would do research into understanding their interactions with the body better, and they would get safer.
But, of course, vaccine side-effect incident rate is extremely rare, because they're completely safe, so manufacturers would rarely have to pay out in the first place, right?
I suppose that I asked "why do people think that it's a good idea" not "is this reasonable/just/excusable", and so your comment was an answer to that - but it definitely doesn't seem like this is something you can actually justify.
Also, I'm curious: if the manufacturers aren't liable for injury or death from their products, then who do you think is?
I think you don't realize how unattractive vaccines are as a product. How many manufacturers make a product that they know each customer will buy only once and cheap? And also take full legal responsibility for health and condition of a person that used your product, not only at the time of use but many years or decades later.
There were cases where companies folded a working and safe vaccine due to PR problems and very limited liability. Read about Lyme disease vaccine.
How long Mc Donalds and Coca-cola would stay in business if you held them liable for most cases of health service costs that resulted from obesity?
Even with exemption from liability, vaccines are such a bad business that we managed to develop just a handful only for most serious infectuous diseases.
When Moderna pivoted from gene therapies to vaccines investors were extremely concerned because vaccines are industry loss leaders.
"Society decided that vaccines are beneficial enough to give companies immunity from prosecution" is a shorthand for competent people in the society decided, it this case competent people being epidemiologists and politicians. Democracy is not about all people making decision. Even if a party has some program and gets support and gets elected on that program it doesn't mean in will realize it or it will implement laws supported by their voters. It has no obligation to and might stay in power (and almost always does) regardless. In American democracy goverment only implements laws that have a support of the richest Americans. So us having vaccines is a result of richest people thinking it's good idea to exempt companies from liability over vaccines they develop. And even if you think it's a bad idea you have no saying over this, not today, not during election, because you are not a member of those elites whose opinion on laws actually matters and even if you were, majority of them doesn't share your views.
Besides manufacturers of vaccines are still liable if they make a bad batch. They are just not responsible for things nobody can know. Like if thoroughly scientifically researched vaccine might have some unforseen consequences in the far future. Because noone knows that. And if you agree to be liable for random future events you have no way of predicting you are not the sharpest tool in the shed.
> I think you don't realize how unattractive vaccines are as a product.
You haven't provided evidence for how unattractive vaccines are as a product. Meanwhile, I can provide counter-evidence: even with all of the liability falling on them, over 150 million people in the United States alone got the vaccine, even before it started to be required by any companies.
Now, that said - your suggestion to research the Lyme disease vaccine vaccine was a good one, and I was really taken aback by how the public reacted - I'll continue thinking about this. However, how then do you explain the literal millions of people who have taken the vaccine even without manufacturer liability? I don't see any way to read this other than a suggestion that there's high demand for it.
> How long Mc Donalds and Coca-cola would stay in business if you held them liable for most cases of health service costs that resulted from obesity?
Bad comparison - those companies are liable if their products cause you to get sick from, say, food poisoning, or a bad batch, or if they include a specific chemical that's toxic. Moreover, you can eat a burger without instantly getting fat, and it takes a lot of burgers to get fat, and you can get fat without eating a burger or drinking a soda - you would have to stretch very far to try to make that comparison, because McDonald's and Cocacola are not selling literally the only thing that would cause the adverse effect.
A valid comparison would be the opioids sold by the McKinsey family, because the opioids really were directly responsible for the drug overdoses - they are liable for that, and should be held accountable (but aren't, due to political corruption). Meanwhile, the topic under discussion is liability for the direct effects of a vaccine - your comparison is completely irrelevant.
> Even with exemption from liability, vaccines are such a bad business that we managed to develop just a handful only for most serious infectuous diseases.
The business argument is not a valid one. "Manufacturers might go out of business" is never a good reason to allow a bad thing to continue. Unless you think that it's ok to keep burning oil in order to keep big oil companies afloat?
Moreover, all it takes is a single vaccine manufacturer to continue producing them, and after mRNA is thoroughly tested (you can't test for decade-long side effects with a single year of testing, by definition), then we'll be able to build them extremely easily and cheaply.
> "Society decided that vaccines are beneficial enough to give companies immunity from prosecution" is a shorthand for competent people in the society decided
No, you don't get to redefine "society" to be "competent" people, or a group of elites. It's either the entire democracy, or you can use a different word.
> competent people being epidemiologists and politicians
I can guarantee you that no epidemiologists were involved - just politicians, who are notoriously corrupt, and not competent in the area of epidemiology (or any health-related field) in the general case.
> Democracy is not about all people making decision.
No, but the only alternative valid kind of democracy is where representatives are elected (which is what happened in the US) who, you know, represent the interests of their constituents - which never happened in this area. Again, there was no debate, no polling, no mention of this in debates - just politicians going off and doing their own thing, without any representation of the actual citizens.
> It has no obligation to and might stay in power (and almost always does) regardless. In American democracy goverment only implements laws that have a support of the richest Americans. So us having vaccines is a result of richest people thinking it's good idea to exempt companies from liability over vaccines they develop. And even if you think it's a bad idea you have no saying over this, not today, not during election, because you are not a member of those elites whose opinion on laws actually matters and even if you were, majority of them doesn't share your views.
This isn't an argument - you're just pointing out the state of the world.
Moreover, the views of politicians or rich elites, or even "competent people" in any case, aren't representative of either "society" or democracy as a whole.
> Besides manufacturers of vaccines are still liable if they make a bad batch. They are just not responsible for things nobody can know.
Irrelevant - the lack of knowledge about interactions with the human body is a direct result of lack of research, not because it's fundamentally not understandable.
These "random future events you have no way of predicting" you're talking about do not exist, because they're not "random" - they're the result of concrete mechanisms in the body that the pharma companies just haven't bothered to understand.
I don't think that most of your arguments hold up, but I'm grateful to you for engaging honestly with this, and for your reference to the Lyme disease vaccine issue, which I'm going to continue to read and think about. Also interesting is the Wikipedia page on the NCVIA itself[1], which has given me more food for thought.
have to remember that for polio vaccine the regime is 3-4 doses. So it increases to 3 per 250,000 people.
Going by typical financial calculations in the US judicial system for permanent career ending injuries damages per case could be in the low millions, excluding punitive damages a jury can award and lawyer costs etc .
If manufacturers (many times only licensing the vaccine) held liability their per dose cost of liability would be $1-10 range, the current price of OPV vaccine is much lower than that
What does that mean? The polio vaccine is considered 100% effective at 4 doses while 90% at 2. Does a vaccine have to hit 100% effectiveness at some number of doses to be considered a cure?
Polio vaccines are not a cure. They do not treat the infection nor the after-effects.
Also, people who have been vaccinated can still, in principle, contract polio. Like people with immunity from previous infection, generally they get a very mild and asymptomatic case that clears almost immediately.
You're arguing semantics when you knew what I meant. Polio vaccines have all but eliminated the virus in the wild (33 cases worldwide as of 2018). It's more effective in every way shape or form when compared to Covid-19 vaccines, which makes the comparison invalid.
Polio took 50 years to wipe out with aggressive vaccination programs approaching 100% in some populations.
If we reach comparable levels of immunization for polio with the COVID-19 vaccine we may yet see that, too.
Where I live with ~90% of adults immunized for COVID, the number of infections and % testing positive continues to fall over the last few months, even as we get more social. I hold out with some cautious optimism?
Perhaps a dumb question but I Googled and looked in the article. Do people spend 24/7 in iron lungs or simply do "sessions" or sleep in them? It was unclear to me how they actually function.
An iron lung works by lowering the pressure around your body, while keeping the pressure around your head at atmospheric pressure. That gradient pushes air into your lungs, and then the iron lung raises pressure around your body to squeeze out that air.
People who have had polio may lose function in their diaphragm muscles and require ventilation at all times. An iron lung user may exit the iron lung temporarily and use some other kind of ventilator, and some people have learned to force air into their lungs using the muscles in their mouth and throat without any machine. As you can imagine the latter can be tiring:
Depends on the patient and the cause. Some require them 24/7.
In the case of polio, the nerves controlling the diaphragm are sometimes affected. This can be partial, with a reduced but present breathing, or completely absent.
In either case, but especially when only partial, people can often adapt when conscious and upright. Other muscles may not be affected, and they can use non-diaphragm muscles to expand/contract the rib cage. In mild cases this is just an assist and provides the extra ventilation for strenuous activity. In serious cases it's required to keep them conscious.
While such adaption becomes an unconscious reflex, it's still largely suppressed when asleep.
There are some parallels to how people with obstructive sleep apnea adapt. They may be able to breathe (e.g. through their mouth) during the day but at night, the instinctive breathing process isn't working quite right.
The result is usually some kind of sleep apnea. Waking up feeling suffocated and having to will yourself to breathe. In the extreme, if that reflex doesn't kick in either, it could cause a hypoxic event, that inhibits breathing even more, and that's potentially fatal.
It may seem strange for younger HN readers to see an iron lung. When I was growing up they were common. I can remember going to the Dayton Hamvention, the annual largest gathering of ham radio operators, and seeing a couple dozen folks in iron lungs being wheeled past the exhibits. There was no disease more terrifying to parents than polio.
I was so young I don't remember getting the shot. My late father said the polio vaccine was right up there with going to the moon for scientific accomplishments in his lifetime.
I saw one in person at a medical museum a few years ago. Terrifying device when you know the history behind it.
I’m way too young for all this stuff first hand, but I’ve seen the pictures of polio wards and documentaries about how bad/scary it was. Glad I missed it.
I hope this isn't a situation where she can't hire someone to make new collars, for example, because they couldn't be "certified" soemhow.
I'm sure there's all sorts of subtleties and issues with keeping this machine running that aren't apparent at first thought (or even glance).
It doesn't seem beyond the bounds of what home brew hardware hacking can do, even without the lovely set of pre-made suitable parts the dysfunctional machine is.
First, there has to be meaningful enforcement against abusive pages that deny users a meaningful choice (e.g. by requiring extra clicks or waits to say no). noyb.eu is working on that (and accepts donations).
Once that is done and the popups offer a meaningful single-click yes/no choice, users have to learn that the "no" button now actually works instead of leading to a labyrinth that wastes your time.
Once that has happened, it's likely that the consent rate will be very low, at which point sites may start not showing those popups and simply assuming a no, which they're allowed to do already, they just prefer to try for the quick yes...
I know some Philips Healthcare Executives. Tomorrow I will write an email. It would be great if they could help. Most likely I will get a "we'll see what we can do" and nothing happens. But you never know.
My son is just about to turn 5. Martha's story makes me so sad, I find no words.
But hey, she's now "naturally immune" to it, which is equivalent to having been vaccinated for it, right? Right? /sarcasm
The "natural immunity" I gained by suffering through chickenpox before that vaccine was available now means I risk getting shingles at some point in the future
Sometimes if you can discover what motivates a person then expose it to then, in the light of day it loses it's power. A lot of arguments in couple's counselling resolve this way.
But that requires listening to them, as people, not dismissing them. See what what it's really about
> But that requires listening to them, as people, not dismissing them. See what what it's really about
You cannot listen to someone if they do not do the same back. From my own experience, questions are always deflected, even simple ones. I want to learn how and why they think, however, when I propose questions to do exactly that, it is taken as a personal insult rather than curiosity.
This depends on the basic goodwill to listen and a desire to reconcile, which usually exists between couples but does not exist in this case. In my experience the antivaxxers are utterly entrenched and view the other side as "the enemy," and even more so since Trump made it a part of the hyper-partisan divide.
She would likely do fine with a modern non-invasive positive pressure ventilation (NIPPV) approach.
There are many patients with other illnesses (COPD, ALS, etc.) that depend on nocturnal ventilation -- most commonly nocturnal BiPAP (two pressure levels that support respiratory muscles).