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Why Sleep Apnea Patients Rely On a Lone, DRM-Breaking CPAP Machine Hacker (vice.com)
Jason Koebler writes: "SleepyHead" is a free, open-source, and definitely not FDA-approved piece of software for sleep apnea patients that is the product of thousands of hours of hacking and development by a lone Australian developer named Mark Watkins, who has helped thousands of sleep apnea patients take back control of their treatment from overburdened and underinvested doctors. The software gives patients access to the sleep data that is already being generated by their CPAP machines but generally remains inaccessible, hidden by DRM and proprietary data formats that can only be read by authorized users (doctors) on proprietary pieces of software that patients often can't buy or download. SleepyHead and community-run forums like CPAPtalk.com and ApneaBoard.com have allowed patients to circumvent medical device manufacturers, who would prefer that the software not exist at all. Medical device manufacturers fought in 2015 to prevent an exemption to the Digital Millennium Copyright Act to legalize hacking by patients who wanted to access their own data, but an exemption was granted, legalizing SleepyHead and software like it.
Christy Lynn was tired all the time, and, after months of trying to diagnose the problem, one of her doctors thought they’d figured out why.
“I didn’t fit any of the descriptions for sleep apnea,” she told me on a phone call. “I’m a woman, I wasn’t overweight. No one would have thought to test me, except I was seeing a doctor who had a similar medical history.”
Prediction for end of Universe #42: Fencepost error in Quantum_bogosort.cpp
or garage door openers their remote codes, the system should have switched to needing an exception to having to prove that it was legitimately copyright material.
But as I said elsewhere, I'll take "Evidence the USA is an Oligarchy" for $500
I've had a narrow naropharyngeal cavity my whole life. Great for holding your breath underwater, but terrible for breathing while laying down.
Or... you're an idiot who doesn't know anything about it? I'm 6' 3" and I weigh under 92kg. I constantly sleep with my mouth open because my nose is so badly blocked (most likely a deviated septum, which affects ~80% of the population) Sleep Apnea isn't always weight related and often has the same symptoms as ADHD.
I had a deviated septum. Spent most of my nights trying to transfer breathing between left and right nostrils. My wife finally convinced me to do the surgery. It wasn't pleasant, but it was life changing! I had never breathed through both nostrils at the same time before. For the last 20 years years now I still am so thankful for that surgery. DMJC, I encourage you to get it done.
The data from each CPAP manufacturer is locked-in to their ecosystem. Often the only way for users access their data is upload it to the manufacturer's system. This means that if you change manufacturer, then you can't take your old data with you. Even worse, sometimes the manufacturer also lock-in the user to their agent where the user needs to visit the agent to get a detailed report to provide to the sleep physician.
You break all the laws of physics and you seriously think there wouldn't be a price?
...and I've used Sleepyhead. I certainly appreciate it, but nobody "relies" on it - all the machine settings are available on the unit and Sleepyhead basically just displays info. It's very cool.
So for data nerds like me I like to dig into it, but the fact that I slept 7 hours 3 minutes last night with 4 wakeups vs 6 hours 52 minutes the night before with 6 wakeups really isn't critical information in any way.
And let's be honest: as much as I'm a tech-head, me "using the data" to fuck around with the settings on my machine is about as likely to kill me as NOT 'using the data" to fuck around with the settings on the machine.
-Styopa
Sleepyhead software is great. It allows you to view the medical data your CPAP machine tracks, but is not normally accessible to you, the patient. Did you get that? It's your medical records, they belong to you, but you are not normally allowed access to them. You need that information to track your progress and make informed decisions about your care. Without this software, if you want to view the data, you must request it from your doctor's office and they typically charge you a fee for copying it. Fuck that.
My view is that the patient is responsible for their own health and doctors should only act in an advisory capacity to make recommendations for improved health. Software like this gives you back control and that's why I think it is so important.
I prescribe CPAPs for a living as a licensed medical provider, and I also use a DreamStation as a CPAP user. Well, used. Once. And promptly decided it was so limited and user-focused as to be useless.
The consumer view of the CPAP data is limited, trivial, and summary only. It doesn't show 1/10th of the things that I get from the proprietary software, that actually shows me *when* and *where* things are happening. For example, I can look, per night, at when the pressures on an AutoCPAP (yes, "AutoCPAP" sounds like an oxymoron. It's actually not) go up or down, and how the respiratory events changed on that basis. If a patient usually takes off his or her mask when the AutoCPAP pressure goes above 10 cm H2O, that tells me something very different than if they keep the mask on at that pressure, but that the pressure changes don't seem to be reducing apnea events,
I get the rationale: patients, given unlimited access to medical data, might be inclined to fiddle with settings based on it, which then complicates the actual treatment. But the fact is it's trivial to find out how to change the pressure settings on any ?PAP machine (CPAP, BiPAP, etc.) by either fiddling or Googling, so there's really no prevention of patient meddling, just *informed* patient meddling.
Oh, and I can't even give my patients their own data. I can give them summary printouts, and do on a regular basis, but that's not the raw data, suitable for further manipulation, it's a PDF that's pretty to print and look at, that has all the appropriate, reasonable, and customary summaries and common methods of displaying the data... but has no interface for someone else to go in and slice and dice it differently.
Of all the problems in the sleep medicine world, I think the biggest is patient ignorance ("it's just snoring") and underscreening. Data obscurity isn't in the top 5, in my book, but I still understand the right to obtain one's own data.
If it effected 80% of the population, it would be a normal septum and the people without issues would have the deviated septum.
In this context, it's the original word meaning. It's not meant as in "their nasal septum is different from normal population", it simply means "their nasal septum isn't straight but is curved".
It's indeed extremely frequent in the population.
But whether it impacts health is an entire different problem.
A non straight wall in your nose doesn't automatically causes apnea, it merely increases the risk.
There are no 80% of over population with apnea.
"Sufficiently advanced satire is indistinguishable from reality." - [Tips: 1DrYakQDKCQ6y52z6QbnkxHXAocMZJE61o ]
There is no need to eliminate the FDA, because specifying and managing the testing of compounds is a vital function that would have to be introduced anyway. Instead, I would strip it of its power to keep products off the market. This is the power so often abused by well-connected corporations. Preventing generic anaphylactic shock inhalers that are available on the world market from competing with Mylan is a prime example.
Let doctors and medical payers keep using "approved by the FDA" as a gold standard while at the same time having the option of importing and using a products that has passed similar regulatory regimes in other major nations when it becomes general knowledge that the fix is in.
The FDA should also be required to show its work in full when it renders an opinion. This is information that doctors and payees may need when evaluating the quality of its recommendations.
I hope you are not a doctor (but you could be).
However While Obesity can be a factor in sleep apnea, it isn't the only one. They are some very Obese people without it, and some skinny people with it.
Now Obesity is a more complex issue to treat then just Eat Less, exercise more Calories in is less then calories out...
If you try to starve yourself, your body will burn less calories, as well you will have less energy in exercising. If you just going crazy with exercising, you can injure your self then put yourself in a condition where you cannot exercise for an extended period of time. Also as you start exercising more, you will need to eat more, if you don't then you put yourself in the starvation mode.
Diet fads are always changing, and it is difficult to find the good ones vs the fad of the week.
Now if Sleep Apnea is a complication related to obesity. a CPAP machine which helps them get a good night sleep, is the first phase to help them loose weight. Having a full night sleep gives them more energy during the day. To Exercise and also exhaustion from lack of sleep will tend to make you want to eat more because it is your body saying I need more energy! So a good night sleep and feeling more refreshed means you don't need to eat as much during the day.
We have all made poor life choices in the past. And there is always something better we should be doing. But we can't start judging people from every bad choice they made, and punishing them further beyond the natural consequences of such actions.
If something is so important that you feel the need to post it on the internet... It probably isn't that important.
Reworded:
1. Eliminate oversight and quality control.
2. Eliminate oversight and quality control
3. Remove the ability of people to pay for healthcare with the exception of the very lowest, cheapest, part of the system. Eliminate access to hospitals and emergency care for everyone except the super rich.
4. Remove all privacy controls and ensure your private healthcare information is available to anyone who wants it, from employers to banks to marketing firms.
5. Only require that people be told the costs of their procedures immediately before the procedure is due to happen. Make no attempt to ensure costs are managable, affordable, or clear.
6. Reduce the costs of procedures by 1-2% by ensuring that anyone injured as a result of a doctor making a mistake has no recourse.
I'm not sure that "Removing access to" is the same thing as "Fix", but if that's your definition, then sure, yeah, your six points will do that.
Alternative idea: we copy the British NHS. Costs 1/3 per person of the American system, much more effective. The NHS has its faults, but note that the British system doesn't ban private healthcare, it just makes it mostly unnecessary.
You are not alone. This is not normal. None of this is normal.