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A $250 Biohack That’s Revolutionizing Life with Diabetes

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Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#131
post #112
post #110

Earlier quoted context omitted.

Old way: you repeat the measurement nothing is in your body. and you konw di you feel e.g. hypo. New way: the sensor needle is simply a little off (in stays sticked). You don’t know, the software doesn’t know. The sensor is not magic that works 100% of the time, it ends in a needle sticked in your body, many ways to go wrong, even if it worked a while. And the danger of “fully automatic” is there.

Just to clarify, we were only discussing monitoring and sensors in this subthread. Not closed loop pump systems. A sensor failure in closed loop is dangerous. I do not know how the control software detects and deals with this. I have no experience with them.

Thanks. Readers should also note that the main topic is about the closed loop apparent "revolution." In reality it really can be dangerous, exactly because of the explained sensor problems which are real. To clarify to those that don't know:

The sensors are big things with the needle permanently in your body. You don't want three needles permanently to be sure that at least 2 from 3 work. If you have only one, you have a real problem if you trust it blindly.

Yes, it's good that some people try. But there are real risks, due to the current limitations as explained.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#132
post #116

Earlier quoted context omitted.

When you say OpenAPS "works much better", while I believe that in general is probably true, how exactly do you know? Is somebody monitoring the OpenAPS fleet and its users? If something did go wrong, would you be able to recover the decision process that led to the incorrect dosing?

Deep understanding of the system, plus personal experience. There is a repository of OpenAPS users' logs, accessible to a small pool of researchers, but (for medical privacy reasons) there isn't any central fleet monitoring. Each user has detailed logs of what their own install saw and did and why, and is expected to monitor it closely. (And we do in fact monitor them--not just as a precaution, but as a necessary par…

When you say The worst-case scenario is quite well understood: excess insulin, up to a configured dosage limit.

Is the configuration software controlled? IE, if you had a bug in your configuration or in your microcontroller, could that bug lead to exceeding the configured dosage limit? Or is there a hard limiter (fixed amount of insulin, a physical limit switch, etc) that prevents that.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#133
post #51

How much are the continuous glucose monitors alone now? You could use it for dieting.

No, it's not usable for dieting for healthy (non-diabetic) individuals because the pancreas will adjust glucose/insulin levels to a pretty flat level. When a non-diabetic person says "I need some blood sugar" when they're hungry and cranky, their actual glucose levels are pretty much at the same levels as usual.

So what is happening when you stand up quickly and your vision goes slightly black when you haven't eaten for a while?

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#134
post #11

Why exactly is a phone app involved? If I were designing this thing, DIY or otherwise, the CGM would talk to a dedicated micro controller, which would in turn talk to the pump. A phone, if used at all, would get an extremely limited API to read the glucose level, see the pump history, and perhaps change the control parameters within a narrow range. The point would be that no input from the phone should be able to kil…

The latest medtronic offering (mentioned in the article) does this. The microcontroller and pump are integrated and there's no communication to an app.

The lack of communication is a bit of a downside for people who are used to monitoring their levels on smartwatch, but overall the auto-mode features more than make up for that.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#135

Earlier quoted context omitted.

> The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blamed if something goes wrong No, they're optimized for reducing risk as much as possible. The amount of scrutiny on a commercial product from a Fortune 200 company is about 2 orders of magnitude more than any DIY project would ever get.

It's the difference between risk of death, and risk of getting sued. The DIY project has a much lower risk of death, but (if a corporation were to do the same thing) a much higher risk of getting sued.

I disagree those two are decoupled. The DIY project has a much lower risk of getting sued, true. But lower of risk of death is highly dependent on edge cases and corner cases, and I'd challenge you to produce evidence that there is an overall lower risk of death.

None of this is to say I'm against any effort to develop an artificial pancreas. I used to work at Medtronic Diabetes. The slothful pace with which this endeavor is proceeding, despite the mountains of money behind it and the obvious and profound unmet clinical need, pains all of us. But "why was it taken so long?" is a question to which there is no simple answer. And though FDA is very much in the corner of "let's get it done" now, that was not always so.

For instance, the quote from the director at FDA re: "you can do everything but manage diabetes on your phone, you should be able to do that as well" masks the history of the med device industry for years trying to get applications on the iPhone approved by FDA and not being able to do so because you couldn't lock the iPhone down (i.e. prevent programmatically anyone from running any other program).

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#136
post #93
post #24

Earlier quoted context omitted.

Someone should issue a challenge to hotz et al. My guess is that this the intersection between diabetics and reverse engineering hackers is only a very small number of people, so this kind of device or impact it could have on people might not even be generally known in the community

As a "reverse engineering hacker" who is a diabetic with one of these pumps (The 670G to be specific) I have black boxed the shit out of it, but because it is doing a good job of keeping me alive and the cost of a new one is high I have yet to disassemble it and do a thorough RE of it. In ~4 years when the warranty is up an insurance is willing to replace it then I will be disassembling it and hacking the shit out of…

What happens to all the pumps that break? Chances are that the mechanics break before the electrics, so there will be a bunch of broken pumps with intact electronics somewhere in the wild. Can they be had as freebies for reverse engineering? Many would get returned to Medtronic under warranty, but there would be exceptions?

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#137
post #72
post #30

Earlier quoted context omitted.

Does the G6 interface with OmniPod at all or do you just use it like a continuous finger-prick test? My youngest (now nearly 16 years old) was diagnosed about two years ago. She's currently on Medtronic's closed loop system (860), but honestly it's so finicky I'm starting to look at switching systems. My daughter is basically at the point of burnout and sees the whole thing as nothing more than a major annoyance. She…

Yes, the OmniPod has no direct connection to the Dexcom CGM, I have to observe BG moving up and enter the number into the OmniPod for it to calculate a correction dose. So, for example, overnight this could still mean programming multiple corrections throughout the night after a slow-carb hard-to-dose meal. For the last year we’ve been going to Clara Barton camp which is for kids with T1D. Most of the counselors are…

Wow. Thank you so much for this perspective. My youngest has another issue where her uncorrected vision is incredibly bad, so I think at times she just feels like her body is trying to punish her.

I had never considered a camp. It looks like the Clara Barton program has wrapped for the summer but it or something like it might be just what she needs. Will continue to look at options like that.

I can see the weary in her eyes when things get out of hand and know she's at that point you describe. I like the idea of not being able to 'fix' it but to overcome it, and will start incorporating that. I've definitely backed off of handling things as much and am finding that I only have the 3 hr sleep cycle about once a week now rather than every day.

I'll also talk to her about moving back to MDI for a little while. We discussed it previously and she wasn't super game, but it might not be a bad option. Someone a while back said that they were surprised how much the fact that they were tied to a little device by a tube made them feel infirm, so going old-school for a week might help in a few different ways (will definitely have to work with our endo on that though)

Again, thank you so much for your words. They have been immensely helpful.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#138
post #51

Earlier quoted context omitted.

No, it's not usable for dieting for healthy (non-diabetic) individuals because the pancreas will adjust glucose/insulin levels to a pretty flat level. When a non-diabetic person says "I need some blood sugar" when they're hungry and cranky, their actual glucose levels are pretty much at the same levels as usual.

So what is happening when you stand up quickly and your vision goes slightly black when you haven't eaten for a while?

I don't know. Sounds like something related to blood pressure. Hunger affects hormones and that affects lots of things.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#139
post #116

Earlier quoted context omitted.

When you say OpenAPS "works much better", while I believe that in general is probably true, how exactly do you know? Is somebody monitoring the OpenAPS fleet and its users? If something did go wrong, would you be able to recover the decision process that led to the incorrect dosing?

Deep understanding of the system, plus personal experience. There is a repository of OpenAPS users' logs, accessible to a small pool of researchers, but (for medical privacy reasons) there isn't any central fleet monitoring. Each user has detailed logs of what their own install saw and did and why, and is expected to monitor it closely. (And we do in fact monitor them--not just as a precaution, but as a necessary par…

Chiming in to say that some data is available to the public as well, as these Open Humans users have shared their Nightscout data publicly: https://www.openhumans.org/api/public-data/?source=direct-sh...

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#140
post #12

Reading around, it's the controller software that is DIY, and it's grown to the point where a DIY device has been built to run the controller software. The sensor and pump/actuator are proprietary Medtronic devices, connected to the controller via wireless links. The DIY controller came about because Medtronic didn't secure their wireless traffic and the protocol was reverse egnineered. New units now come with a secu…

Near the end of the article: > A European team recently created an app for Android phones and cracked the code in a popular pump from Roche Holding AG So even if they don't find a partner, they'll probably find pumps they can use.

I'm currently using the AndroidAPS and it works great. Roche has said the warranty is off if you use the Combo pump for looping, but the maker of the other supported pumps DanaR and DanaRS said that looping is OK.

Right now I'd recommend getting the newer DanaRS and a Dexcom G6 for the best possible support.

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