We can do better than that
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@boomzilla allowed Harrison Weber to say in We can do better than that:
The Chan Zuckerberg Initiative, a company created by Mark Zuckerberg and Priscilla Chan to "unlock human potential and promote equality,"
I'm beginning to notice a trend - whenever something's bad, it causes inequality; whenever something's good, it promotes equality.
The cause and effect used to be the other way 'round...
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@coldandtired said in We can do better than that:
healthcare.gov
I like how when you click another language you just get taken to a paragraph with a phone number.
Uh huh...
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@anotherusername said in We can do better than that:
@boomzilla eh, probably; I'm more inclined to think that he's not just in it for the money, though, given that he has so much already. If the returns mostly come in the form of actual progress rather than money, I think he'd be pretty satisfied. Plus publicity, of course, which I'm sure he also won't mind.
People who sponsor medical research usually have a lot of money themselves. People who do the actual research might not.
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@HardwareGeek said in We can do better than that:
@anotherusername said in We can do better than that:
As a pediatrician, I'd assume she probably knows a little about health care research.
I'd assume she knows a lot about sticking needles, thermometers, and such in kids. I wouldn't assume she knows anything much about research. Maybe, but not necessarily.
Maybe you're thinking of a pediatric nurse.
A pediatrician is a full-blown M.D. who then completes an additional 3 years of residency training as a pediatrician.
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move fast and break things
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@anotherusername said in We can do better than that:
I'm more inclined to think that he's not just in it for the money, though, given that he has so much already
The only thing the super rich lack is a way to avoid death
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@masonwheeler said in We can do better than that:
@Fox That's not flamewarring; that's just simple common sense.
Google: Don't be evil.
Facebook: Don't even bother pretending we're not evil.
Cable networks: be the ultimate evil
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@anotherusername said in We can do better than that:
Maybe you're thinking of a pediatric nurse.
No, I'm not. I am aware of the difference between a pediatric nurse and a pediatrician. By "sticking needles ... in kids," I mean that a pediatrician is very knowledgeable in the diagnosis and treatment of diseases and injuries in children. Medical research and practicing medicine are completely different things. There is no reason to assume a pediatrician would have significant expertise in researching those diseases or treatments even in children, much less in the general population.
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@boomzilla said in We can do better than that:
It's not a flamewar thread.
It is now, to the garage with it
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@Yamikuronue said in We can do better than that:
@dkf said in We can do better than that:
lots of medical research is shit and it's shit in ways that even a lay-person can figure out
Too true. I was just reading this today: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
Yeah, all the same with mental diseases too. Just in your head.
I'm willing to bet that there is a bias against telling someone that they need to rest more than others, and that too many have been misdiagnosed. For most people that don't have the illness, not getting exercise increases the symptoms of fatigue and lowers the quality of rest. So, it makes sense from a healthy perspective that exercise is the solution, but not from a diseased perspective.
Press reports also alleged that ME/CFS researchers had received death threats, and they lumped the PACE critics in with the purported crazies.
Hmm.... where have I seen that before.
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@xaade said in We can do better than that:
Yeah, all the same with mental diseases too. Just in your head.
What do you mean by that?
@xaade said in We can do better than that:
and that too many have been misdiagnosed
Given these diseases, including the one I have, are often dismissed as "bullshit" diseases (like being allergic to EMF waves), I'm not comfortable with your unsourced assumptions here.
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@Yamikuronue said in We can do better than that:
What do you mean by that?
I'm saying that, often, people with mental diseases have to face criticism that it's all in their head.
@Yamikuronue said in We can do better than that:
I'm not comfortable with your unsourced assumptions here.
You're misunderstanding me.
As far as comfortable goes.... . I never consider comfort to be a good measurement when I'm curious about the truth.
The point I was making is that, misdiagnosing could be contributing to the assumptions that simply exercising cures the disease. For many people with fatigue problems, exercise does help. But if exercise does help, then they don't have the disease.
In other words, the study appears to be driven by bias against the credibility of the disease.
They feign concern for the patients, but I'm doubting they really are.
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I get the feeling that I'm going to have to state pro/against before I make my posts, because you often attribute malice to them, even when I'm agreeing with you.
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@xaade said in We can do better than that:
you often attribute malice to them
The thing is, you keep doing this thing where you baldly state opinions that are uninformed and kind of offensive, like "It's all in your head", and then expect me to read that text in a sarcastic tone. But I don't know which lines are sarcastic and which ones aren't. I've actually been told that sort of thing before by people who weren't being sarcastic. So I figured I'd ask before attributing malice this time.
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Maybe you missed these?
@xaade said in We can do better than that:
I'm willing to bet that there is a bias against telling someone that they need to rest more than others
@xaade said in We can do better than that:
So, it makes sense from a healthy perspective that exercise is the solution, but not from a diseased perspective.
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@xaade said in We can do better than that:
I'm willing to bet that there is a bias against telling someone that they need to rest more than others
I'm not sure what that sentence means. Who is biased? What someone? What others?
@xaade said in We can do better than that:
So, it makes sense from a healthy perspective that exercise is the solution, but not from a diseased perspective.
I'm not sure that's not sarcasm either. I mean, I am now, but I wasn't.
Also:
@xaade said in We can do better than that:
I never consider comfort to be a good measurement when I'm curious about the truth.
Okay, but sources are important when talking about "the truth". Making random assumptions isn't credible.
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What if we lived in a world without disease?
What if we could cure literally everything. Everything. Even though viruses, diseases, bacteria and prions are all different things, coming through different vectors, acting on the human body in different ways, using unknown and unknowable methods, mutating on a whim and possibly in some way vital to the Earth's ecosystem. So what I'm saying is I want a single method that will solve downtown traffic congestion, commuter airplane routes across India, improve the taste of food on a train, and also brush the hair of donkeys used to traverse the Grand Canyon. Because these are all THE SAME PROBLEM with the SAME SOLUTION, apparently.
And what if we could do this all with an amount of money per year that is less than what's handed out to Powerball winners. I mean, sure, that sounds like a lowball. A suspiciously low ball figure. Like-- okay, I know it sounds like a pittance that is probably actually a money laundering scheme or a tax-dodge or something-- but no, really. What if we could do this?
And what if we could apply the REVOLUTIONARY methods we use to create Facebook, literally the biggest and most complex website in the entire history of computers (according to me). We don't do QA on Facebook; bypass FDA trials! We are first to market with new features, so rush those cures to production! Who needs long term data on results and impact. Did the cure accidentally kill everyone with a certain gene expression? Bitch, please-- it works well on my genome. You're doing it wrong. If it gets too bad, we can always rollback the production, and send out a press release with "oops". Or maybe it was your fault the cure didn't work. Upgrade to a newer body. Or maybe you're just too old, and it's better if you were retired from society.
And what if we could do this all in an impossibly short timespan. So that our kids can grow up in a disease-free world? Who is "us" and how do I define "children"? That's an interesting question. Let me answer it by discussing the shades of blue that the cure's cardboard box will be available in.
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@Yamikuronue said in We can do better than that:
Okay, but sources are important when talking about "the truth".
Yes, but you are often motivated by your comfort level, and that's why it's frustrating...
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@xaade Everyone's motivated by their comfort level. I'm just honest about it. What is frustration besides a type of discomfort?
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@Lorne-Kates said in We can do better than that:
it works well on my genome. You're doing it wrong
JeffCare
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@Yamikuronue said in We can do better than that:
Given these diseases, including the one I have, are often dismissed as "bullshit" diseases (like being allergic to EMF waves), I'm not comfortable with your unsourced assumptions here.
Sorry, but every reputable, well-run study on the subject--performed using a mixed group of test subjects who do and do not self-report as EM sensitive, with the test run "blind", the administrators not knowing who is EM sensitive and who is not among the test group and the test subjects not knowing when they're actually being subjected to EM radiation and when they aren't--comes to the same conclusion: exposure to EM radiation does not cause increased suffering in individuals who self-report as EM sensitive.
Which is not to say the suffering is not real, of course. But the accused cause thereof is pure nonsense; more in-depth studies generally show it's strongly correlated with stress, and has zero correlation with EM exposure.
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@masonwheeler said in We can do better than that:
exposure to EM radiation does not cause increased suffering in individuals who self-report as EM sensitive.
yes, exactly. EM sensitivity is a bullshit disease. Chronic Fatigue is often lumped in with it. But Chronic Fatigue is only a bullshit label; ME and Fibro are diagnosable, recognized, and measurable, but both are often called "Chronic Fatigue" in everyday conversation despite being distinct from each other.
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@Yamikuronue Oh, I see. I misread, and thought you were claiming to have EM allergy and were grousing about people dismissing it as a nonexistent condition.
My mom's been diagnosed with fibromyalgia, so I know a little bit about that one. The problem there is that it seems to be the medical equivalent of ¯_(ツ)_/¯, like "this person is experiencing chronic pain and we have no idea what's causing it, but we don't want people to think we have no clue, so we'll give it a very impressive medical-sounding name to make it appear we know what we're talking about."
And as a professional developer whose job frequently involves being given a problem, figuring out what causes it, and repairing it, that bugs me on a very fundamental level.
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@masonwheeler This applies to most things categorised as syndromes. It basically means there's no detectable cause but it looks like these other cases so lets assume they're the same thing. Often later research sheds some light on some sufferers but not all, because there are multiple causes
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@Lorne-Kates said in We can do better than that:
it works well on my genome
"Hello, genomic support here, how can I help you?"
"Yes, I took one of those new pills that were supposed to give me super strength and they just made my penis fall off"
"That's weird, they worked on my body. Have you scanned your DNA for unauthorised modifications?"
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@Yamikuronue said in We can do better than that:
@masonwheeler said in We can do better than that:
exposure to EM radiation does not cause increased suffering in individuals who self-report as EM sensitive.
yes, exactly. EM sensitivity is a bullshit disease. Chronic Fatigue is often lumped in with it. But Chronic Fatigue is only a bullshit label; ME and Fibro are diagnosable, recognized, and measurable, but both are often called "Chronic Fatigue" in everyday conversation despite being distinct from each other.
Ok, so I did a little digging, and there's an inherent problem with Chronic Fatigue that leads to bias against the disease.
Which leads to this correlation.
http://www.jpsychores.com/article/S0022-3999(08)00113-X/abstract?cc=y=
The problem is that these studies are partially derived from the study you linked, so they have inherent bias. However, they point to a symptom of the disease that I think is causing an emotional bias against the disease, leading to a dismissive solution. People with CFS tend to give more negative attention to illness, and that causes a feedback effect on their fatigue. That's not to say that behavior therapy would cure CFS, but it may be possible to prevent the feedback and alleviate the severity.
It's not surprising that mental illness can be linked to a disease that causes fatigue.
You also have this problem
http://www.cfidsreport.com/Articles/NIH/NIH_CFS_4.htm
The disease hits women the hardest.
So, it's not hard for me to imagine the following.
In comes a woman, who is highly emotional (because of the fatigue), is almost hypochondriac about the various symptoms, seems to be suffering from anxiety that increases the level of fatigue due to emotional exhaustion.
The first thing a family doctor would do is get them to visit a psychiatrist, and they're going to say, let's give you some antidepressants.
Add to that, we're in America, and exercise is probably going to be a recommendation.
Someone works backwards from that and decides to do a study to see if that help, overexaggerates the correlation to the feedback effects, and thinks they have a cure.
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@xaade said in We can do better than that:
Add to that, we're in America, and exercise is probably going to be a recommendation.
Also drugs. The more expensive, the better.
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So, I was wrong about misdiagnosis.
It appears it goes the other way.
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@Jaloopa I guess I just kind of wonder how hard can it really be to debug something like chronic pain.
We know what causes the sensation of pain: nerves firing, sending pain signals. We have machines that can observe nerves "lighting up" in a patient in real time. Why not trace what's causing all the pain nerves to go off, or at least trace where they're going off and then take a very close look at those places in the body and compare against a healthy person with a similar body and see what stands out?
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@masonwheeler said in We can do better than that:
see what stands out?
A fucked up spine.
But you know, too many quacks, so let's ignore that.
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@Lorne-Kates said in We can do better than that:
So that our kids can grow up in a disease-free world? Who is "us" and how do I define "children"? That's an interesting question.
People tell me that I'm the cure-meister. I don't say it about myself, but people say it.
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@Lorne-Kates said in We can do better than that:
Because these are all THE SAME PROBLEM with the SAME SOLUTION, apparently.
Yep.
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@Lorne-Kates said in We can do better than that:
What if we lived in a world without disease?
What if we could cure literally everything. Everything. Even though viruses, diseases, bacteria and prions are all different things, coming through different vectors, acting on the human body in different ways, using unknown and unknowable methods, mutating on a whim and possibly in some way vital to the Earth's ecosystem.
That would actually cause a whole lot of misery. The immune system is the most dysfunctionally bureaucratic military organization the world has ever seen. When it doesn't have a legitimate enemy to fight, it goes out and finds something to justify its own existence, and that's where allergies and a lot of the nastier autoimmune disorders come from.
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@anonymous234 said in We can do better than that:
and they just made my penis fall off"
"Oh, you're using FireFucks 22. That isn't supported."
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@masonwheeler said in We can do better than that:
We have machines that can observe nerves "lighting up" in a patient in real time. Why not trace what's causing all the pain nerves to go off,
That's called “connectomics” (hate the name) and it's really difficult, cutting edge science still. We're still years off that sort of thing hitting the clinic.
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@dkf Do we need it to hit the clinic.
Just get some legit trials in there and be able to make the connections * between symptoms and the nerve tracing we did.
* bad pun
I mean, it would be helpful on a specific basis when relating to a pinched nerve.
But at least getting some of these phantom conditions down, when we can't see a collapsed disc or some other skeletal or physical cause on a catscan / xray, would be helpful.
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@masonwheeler said in We can do better than that:
Why not trace what's causing all the pain nerves to go off, or at least trace where they're going off and then take a very close look at those places in the body and compare against a healthy person with a similar body and see what stands out?
Because it's not in the body.
Fibromyalgia-style chronic pain is caused by neurological changes that cause the brain to become more sensitive to signals from ordinary neurons. The actual determination of what is pressure, tickling, or pain occurs in the brain; it's only recently that we've understood that the sensitivity to pain fluctuates in an ordinary person based on the situation. Sometimes the brain gets "stuck" in a high-sensitivity mode that reads everything as pain even when it's just normal body functioning. We didn't have the tools to diagnose that condition until very recently, so it was dismissed as "that can't possibly hurt so you're a hypochondriac".
I'm not sure about the root causes of ME, but it's different, it's often linked to devestating childhood illnesses. Fibro is often caused by psychiatric or physical trauma; if it's the former, it can be comorbid with depression, anxiety, or whatnot, and if it's the latter, it can be comorbid with whatever's causing the pain, lingering after the root cause is solved and the patient should recover.
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Also:
@masonwheeler said in We can do better than that:
Why not trace what's causing all the pain nerves to go off, or at least trace where they're going off and then take a very close look at those places in the body and compare against a healthy person with a similar body and see what stands out?
That's exactly what medical researchers hate about software developers, we assume you can just run a diagnostic, find the source of the problem, tweak the code a bit, and solve all problems ever XD
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@Yamikuronue said in We can do better than that:
That's exactly what medical researchers hate about software developers, we assume you can just run a diagnostic, find the source of the problem, tweak the code a bit, and solve all problems ever
Let me introduce you to...NodeBB.
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@Yamikuronue said in We can do better than that:
That's exactly what medical researchers hate about software developers, we assume you can just run a diagnostic, find the source of the problem, tweak the code a bit, and solve all problems ever XD
One of my coworkers at a former job had a sign he hung on the wall next to his desk:
LIFE WOULD BE SO MUCH EASIER IF WE ONLY HAD THE SOURCE CODE
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@anonymous234 said in We can do better than that:
@Lorne-Kates said in We can do better than that:
it works well on my genome
"Hello, genomic support here, how can I help you?"
"Yes, I took one of those new pills that were supposed to give me super strength and they just made my penis fall off"
"That's weird, they worked on my body. Have you scanned your DNA for unauthorised modifications?""Please rebirth as a clone and see if that helps"
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@masonwheeler We don't need the source code, just the decompiler.
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@masonwheeler Pretty convinced life's source code has a line that says, "if xaade, then cause everyone to misunderstand him."
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@masonwheeler said in We can do better than that:
@Yamikuronue said in We can do better than that:
That's exactly what medical researchers hate about software developers, we assume you can just run a diagnostic, find the source of the problem, tweak the code a bit, and solve all problems ever XD
One of my coworkers at a former job had a sign he hung on the wall next to his desk:
LIFE WOULD BE SO MUCH EASIER IF WE ONLY HAD THE SOURCE CODE
Let me introduce you to...SSDS.
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@Yamikuronue said in We can do better than that:
Also:
@masonwheeler said in We can do better than that:
Why not trace what's causing all the pain nerves to go off, or at least trace where they're going off and then take a very close look at those places in the body and compare against a healthy person with a similar body and see what stands out?
That's exactly what medical researchers hate about software developers, we assume you can just run a diagnostic, find the source of the problem, tweak the code a bit, and solve all problems ever XD
It's more similar than they realize.
The difference is that medical researchers have the code in a foreign language, they have a +/- on the exact line causing the problem, they using copied lines of code to solve the problem, and regression testing is always done in production.
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@boomzilla said in We can do better than that:
@masonwheeler said in We can do better than that:
@Yamikuronue said in We can do better than that:
That's exactly what medical researchers hate about software developers, we assume you can just run a diagnostic, find the source of the problem, tweak the code a bit, and solve all problems ever XD
One of my coworkers at a former job had a sign he hung on the wall next to his desk:
LIFE WOULD BE SO MUCH EASIER IF WE ONLY HAD THE SOURCE CODE
Let me introduce you to...SSDS.
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I know someone with post-polio syndrome. Ain't nobody gonna research that.
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@xaade said in We can do better than that:
and regression testing is always done in production
So no different from the forums we've used, right?
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@Greybeard my dead uncle had that.