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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
OP alluded to that individual as being a "Fatty Fatty McFat". The chosen quote stands as direct contradiction to OP's worthless drivel. Nothing more needed to be said...
And then, YOU, opened your mouth. *shakes head*
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
Normal would be straight and in alignment.
and the people without issues would have the deviated septum.
I have a deviated septum (discovered due to a completely unrelated problem for which I was getting a CT scan). I have no issues relating to sleep apena or breathing.
It is most definitely possible for a large portion of a population to have a medical condition that is completely irrelevant to their lives. As usual it's the really severe issues that actually present some symptoms or require some treatment.
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 ]
But it's not theirs. It's yours. You rent it for a year and you own it after that. Or your insurance pays outright for it when you get it, depending on the type of insurance you have. But it is definitely yours, not theirs.
-- You are in a maze of little, twisty passages, all different... --
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.
Access to one's own medical records in full should be a basic right for us all. In line with this, all treatment machine records should be accessible by the patient. That most patients have no ability to make use of all this information is true but beside the point. That's what we hire medical experts to do.
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.
The invisible hand of the market will fix it; if too many planes crash, customers will switch to competing airlines. It seems to be working for Malaysia Airlines.
One of the reasons you hold this view is that you're looking at sleep medicine through the narrowest possible end of the telescope. Apnea has the thinnest etiology of all major sleep problems. The dimensionality is low enough that it almost becomes possible (even preferable) to delegate micro-management of the therapeutic parameters to your amazingly convenient (and under-worked) sleep specialist.
But in sleep medicine, that's only true in apnea.
I've had sighted-N24 for thirty years. Melatonin wasn't even legal in Canada during the 1990s, so I didn't get onto the melatonin train until 2005. Using off-the-shelf melatonin available to me then, I managed to reduce an 85 minute daily drift to a 10 minute daily drift, and while mostly better, and extremely encouraging at first, this did not prove to be a great life. I still had to discontinue melatonin once a month, progress through night mode (advancing 1.5 hours per day) until I realigned again at the early AM. There was intense daily fatigue in the later afternoon, and sometimes an associated emotional roller coaster, and the part of my life I could carve out free from all this nonsense was sufficient to work only; I was living to work, and barely coping the rest of the time. I don't think my quality of life was much better than a normal person assigned to a multiyear stint on the DEW Line, functional enough to remain employed, with nothing but SAD as your reward between the end of the work shift and finally hitting the hay, day after day after day. I cracked after struggling with this for about three years.
Then I tried formally free-running for about three years, during which time I was unemployable. I went around the clock every 16.5 calendar days (15.5 personal days). Out of that 2.25 week cycle, I would have three spectacularly good days, three good days, three mediocre days, three nightmare days, and three wildly unstable days. And then the cycle would repeat. Even within those parameters, I could have made this work if only the cycle hadn't so insanely brisk. Each of those changes takes about a day to accommodate (this after three years experience singularly devoted to riding the irregular surf). I had access to my best self—able to constructively direct that energy—for two day chunks, twice a month.
Then I found sustained release melatonin and with that I managed to reduce my drift to zero minutes per day, under absolutely maximal adherence, with narrow tolerances on the dose taken and the precise time of administration. One time, for three months, I managed -1 minutes per day, my best result ever. This was in advance of setting up shop for a week in a major city for my wife to undergo major elective surgery, where I needed to be on regulation day-mode like never before. I managed to roll my 09:30 wake up time back to about 08:00—after three months of flawless adherence—which was good enough.
I can adjust my wake-up time in the forward direction by 2 hours in one day by taking melatonin at bedtime (just a little longer than my natural drift). I can adjust my wake-up time backwards by an hour in a month or two by fanatical devotion to my medication regime.
The older, simpler model of the circadian clock doesn't explain my structural depression and my cognitive irregularities as I cycled through my free-running sleep pattern (which, I might add, was as stable as a metronome, despite being slightly eccentric in how fast I advanced during the daylight/darkness portions of the cycle—effectively, there would be an extra four hour jump during the "wildly unstable" three days before the next cycle began again at the 00:00 early AM).
If I can fiddle my blood level melatonin profile just a little bit more, maybe I can
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.
If it effected 80% of the population...
Wow, I guess I have some pretty major misunderstands of the reproductive system.