I’m happy to say our daughters prognosis has improved greatly since she started this treatment. Without SciHub she might not still be with us.

When my mom was diagnosed with breast cancer my dad poured over literally hundreds of medical papers to determine the best course of action. I believe he saved her life. Scihub was instrumental in that. I helped a little in checking and challenging his conclusions. I think it's unlikely she would have had as good an outcome if we'd just listened to the doctors.

My conclusion is if you want the best medical care be sure to do your own research and talk to many doctors about your findings and treatment options. Do not blindly trust the medical community. They are years behind the current state of knowledge in their field and just do not have the time and energy to spend per patient to get the best outcome.

I feel sort of sick remembering one meeting where they told us our daughter would get 24 hour nursing care covered by insurance if we got her a tracheotomy, what a weird carrot to dangle in front of a parent. I think they thought what they were suggesting was the best medical choice but a baby with a trach needs 24-hour care because it can’t even cry when the tube is in its throat.

Luckily I'm obstinate and finally saw a specialist who correctly identified it and treated it, but it's critically important to be very active in your own medical treatment. Get second (and third, and fourth..) opinions, raise lots of questions, push back (politely) against things that don't seem to make sense.

I would alter this slightly to "have a trusted advocate do research and talk to many doctors". The person with the life threatening diagnosis may not be in the right frame of mind to advocate for the best treatment. Should you ever find yourself in the hospital, having a capable ally alongside you can make a world of difference.

Could I connect you with some journalists? My contact info is in my profile.

SciHub gave me access to valuable information that helped me understand my condition and the right questions to ask my doctor next week.

https://www.youtube.com/watch?v=Yval98eOyZc

http://minikanren.org/workshop/2020/minikanren-2020-paper10....

Anybody who wants to take it down is declaring war on the sick and disabled. Shut down Elsevier instead because they're an organization of long corrupt middlemen.

There's a company that is not public but working in this space, I cannot recall it's name. They use NLP to diagnose patient condition by ingesting raw information/text from medical books/papers. You describe how you feel and any other information that you have in an article, and it gives out possible conditions and prescription.

AFAIK, they still recommended that you go to the doctor, but you could use it as an extra to check the diagnosis yourself.

But their point was they have all the data coming out in new papers, and the system studies it constantly and is always kept up.

We read about a surgery that could potentially help our daughter, which the head of neurosurgery declined to do. We then said we’d take her to another children’s hospital (it turns out our insurance actually wouldn’t have covered that, but we didn’t know we were bluffing) and he begrudgingly agreed to perform the surgery. Had to get the expert who is a professor at Washington University to give a second opinion recommending surgery before it happened.

Most of the doctors really didn’t like my wife, there are notes about her obstinance in our daughters file. But our daughter is doing well, and I’m glad I married someone so doggedly persistent.

Alexandra Elbakyan is a hero.

Because according to EBM nothing exists and nothing works unless it's proven with a big RCT.

Yes, it's ridiculous. Especially as in your case.

RCT: randomized controlled trial?

Were the other four too lazy/orthodox to read the papers you're referencing? Or they read the papers and still thought it wasn't a good idea? I'm going to presume that the former is the case, unfortunately.

The way we think about it is a doctor has what, 15 minutes (if that) to spare thinking about our daughter languishing in the NICU. My wife spent literally all day, all night, ruminating and worrying about her. I had just started a new job, (I was unemployed when she was born!) and honestly poured myself into that position, maybe as a way to avoid living at the hospital (I’m not proud of it but that’s what happened). But it is weird we had to get the pulmonologist to prescribe a medication that’s something the neurologist should probably be prescribing.

I have personal experience with this as a patient and a family member of physicians. I wish I didn't know what docs say and think about their patients. It's a really unfortunate characteristic of the US medical system.

There could be any number of reasons; without more details, I think it's quite a leap to immediately assume they're "lazy/orthodox to read the papers".

I get why it happens: they have to deal directly with patients who 99% of the time are not research capable and if they claim to be research capable what they really mean is that they've been sharing conspiracy theories on facebook. Doctors build defense mechanisms against the nonsense (authoritative tone, dismissive attitude) that grate on academic sensibilities. They can be slow to come around but eventually they usually do.

As the doctors cycled out though it sort of reverted to the mean, back to the authoritarian stance you expect from doctors, since NICU doctors were constantly rotating out.

I think you’re absolutely correct about having dozens of other patients. My wife wrote a long email, that was forwarded to the doctors, citing various articles with links to the medical journals and the doctors couldn’t thank her enough for it. It wasn’t until that happened that someone prescribed the medication for her.

For instance, I have a background in biochemical engineering, my fiancée is a cancer surgeon, 4 cousins are doctors, and another 3 cousins married doctors. Yet the entire family collectively believes in homeopathy, unani medicine (Greek medicine) and other hogwash like cupping therapy, save for a select few. The last time I visited one of my relatives, they were ingesting some ayurvedic (Indian medicine) concoction that was later found to contain arsenic. One of my friends is daughter to two doctors, yet her Dad (a former Indian Army doctor, so not the run-of-the-mill kind) still spouted nonsense on Facebook like "burning Turmeric powder and inhaling it would prevent COVID".

It's easy to understand, after all this, why doctors tend to be generally skeptical of laymen bringing them some new "breakthrough". Not much to do with personality than with what they see as a daily occurrence. Of course, one way to sift the chaff away from the grain would be to demand that patients bring in scientifically published papers, at which point most patients would scoff at you for not supporting their viewpoint.

This kind of bullshit is too prevalent around here, sadly. And telling that ayurveda is pseudoscience instantly makes you "anti-national" and what not.

The difference is, the journal publisher groups realised they can continue charging extortionary prices and get rid of the competition of "free" paper websites by suing everything that moved.

Academics, generally getting slightly-less-than-free copies of the papers at their institutions and generally being apathetic about their universities being extorted, created a gulf and precluded any kind of pirate culture.

But publishers have since become emboldened, prices have risen, the inequality access has been increasingly advocated for and brought to light, and the open access journals had a bit of momentum for moment.

Honestly, if you ask me, the solution here is pretty simple (at least in some fields). Negotiate (if it's not already granted) the permission to publish manuscripts and pre-prints. Submit them to ArXiV or Bio/MedRxiv, or whatever repository.

This doesn't tackle the issue of academics paying publishers to send emails to other academics who in turn work for free to review papers, but one battle at a time.

Edit: Actually I usually sent emails even when we did have a hard copy but no online access. Just because I couldn't be bothered to find the physical copy

If a paper becomes prominent and many people want to read it, is it reasonable for the authors to be inundated with hundreds of requests for a copy?

What is the point of journals if we rely on word of mouth interactions to share information?

"We think there is a fundamental misconception about piracy. Piracy is almost always a service problem and not a pricing problem," he said. "If a pirate offers a product anywhere in the world, 24 x 7, purchasable from the convenience of your personal computer, and the legal provider says the product is region-locked, will come to your country 3 months after the US release, and can only be purchased at a brick and mortar store, then the pirate's service is more valuable."

Microsoft office is ~$1000, which is 2x higher than average month salary in Thailand/Vietnam.

A CD album is $10(?), which is equivalent to 10 meals. A cassette is $3, which is 3 meals.

Pirate is the only way to access these things. It's a pricing problem.

Maybe I'm just older and have less free time, but public trackers seem less and less useful every year. And private trackers have a huge barrier to entry.

Maybe, but part of the reason content creators will keep getting screwed is that there’s no way to pay them equitably with $5/mo subscriptions. Prices would have to rise. So it seems that the market alternative to piracy is gross exploitation.

I don't accept as a given that my $10 a month subscription that I use to stream as few hours of music can't be fairly split with the publisher and the creator.

I can write a song, make a movie, and take photographs all from a pocket computer and publish globally instantly.

I hope it's not too tangential, but I think of economics and politics the same way:

XYZ-ism is good you say? ABC-ism is bad? Sure, grow your XYZ-ism naturally, go for the bootstraps. If it's more awesome it should be more efficient and productive, people should choose it naturally, happily, and calmly in their own best interest without coercion or propaganda. But, of course, that never happens.

(I'm also not sure that awesome == efficient + productive, but that's a different issue).

if awesome = neither effective nor productive then we're going to get mass starvation and mass death, or at the very least feudalism, and that doesn't sound nice

I know of no competitive natural system that's more wasteful than its competitors

laisez faire is no way to solve the tragedy of the commons

A monopoly is MAGLIGNANT FUCKING TERATOMA!

Excuse my emphasis and emotion, but that's the best analogy I can come up with.

Unless of course you want an economic or dictionary definition, but I don't think that's what you were asking.