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Context: I am a type 1 diabetic. As far as doctors are concerned I am an exemplary patient who has shown blood glucose controls as good as they come (A1C of le

Context: I am a type 1 diabetic. As far as doctors are concerned I am an exemplary patient who has shown blood glucose controls as good as they come (A1C of less than 6.5 for more than a decade now for those that know what it means). I regularly hear from "concerned" people how they know someone else who's blood control isn't as good and they should do better, etc..., etc... I have personally used some of these DIY products and so I want to be very clear; the difference between "somewhat poorly controlled blood sugar" and just one really bad mistake in "tightly/ best-controlled blood sugar" is this 1) Poorly controlled - in a decade I will start to have some additional health problems (vision impairment/neuropathy/etc) 2) Tightly controlled w/dosing mistake - Coma/Brain Dead/Dead There is a good reason to test this equipment and take a conservative approach. Physical activity level and how much active or "on board" insulin you need when you are being active vs inactive can vary by 10x. As an example of this; before I do cardio workouts I intentionally do a carb load and let my blood sugar raise before starting to counter the effect the exercise will have on my blood sugar. Despite this on two occasions during running I have experienced double drops (super fast blood sugar drop to unsafe levels) to levels so low I started to black out. Nightscout/OpenAps/Dexcom/Medtronic, it doesn't matter open source or closed source none of these devices can handle these scenarios so at the end of the day it is still on me to intervene and make decisions based on what I am going to do. Until something better than pump systems come along (and these "artificial pancreas" systems as they are calling them to day are still just pump systems; I will have to intervene no matter how sophisticated the algorithms. In summary; just because you care about someone with diabetes, do not presume you know what is best for us.

jimrandomh 8y ago
OpenAPS doesn't mean you never have to intervene, nor does it claim to. It does mean that the interventions needed are less frequent and more predictable. Ie, in the case of exercise--if it's only a small drop, shutting off basal is enough to counteract it, so it'll do that, and you don't have to do anything. If it's a larger drop, you need to eat carbs to counter it--and it'll send you a notification telling you how many carbs you need to eat, and this notification will typically come quite a bit earlier than the low-glucose alarm the CGMS will eventually send.
- bigtunacan 8y ago
  Yep; I'm aware of all of that. I'm glad that the open source community is getting involved and I want to see these things help move the industry forward. My comments were to the parent who presumes 1. To know what is best for diabetics 2. The device is inherently less risky than current options Nightscout absolutely would not get through FDA approvals today if for nothing other than catastrophic failures. I love the features and think it's way more robust than what is provided by Dexcom, but at the end of the day, I switched back to Dexcom's receiver and app because it doesn't crash. OpenAPS is great, but requires a level of research and effort than many patients aren't capable of. Then on top of this OpenAPS has this nice disclaimer as an opener, "By proceeding to use these tools or any openaps repositories, you agree to abide by the copyright agreement and release any contributors from any liability." Now I understand why that statement is there, but when someone dies using this "product" that hasn't been approved by the FDA; well let's just say I hope all parties involved have really good umbrella policies, because I'm not too sure that's going to hold up in a court of law.

jimrandomh 8y ago

OpenAPS doesn't mean you never have to intervene, nor does it claim to. It does mean that the interventions needed are less frequent and more predictable. Ie, in the case of exercise--if it's only a small drop, shutting off basal is enough to counteract it, so it'll do that, and you don't have to do anything. If it's a larger drop, you need to eat carbs to counter it--and it'll send you a notification telling you how many carbs you need to eat, and this notification will typically come quite a bit earlier than the low-glucose alarm the CGMS will eventually send.

bigtunacan 8y ago
Yep; I'm aware of all of that. I'm glad that the open source community is getting involved and I want to see these things help move the industry forward. My comments were to the parent who presumes 1. To know what is best for diabetics 2. The device is inherently less risky than current options Nightscout absolutely would not get through FDA approvals today if for nothing other than catastrophic failures. I love the features and think it's way more robust than what is provided by Dexcom, but at the end of the day, I switched back to Dexcom's receiver and app because it doesn't crash. OpenAPS is great, but requires a level of research and effort than many patients aren't capable of. Then on top of this OpenAPS has this nice disclaimer as an opener, "By proceeding to use these tools or any openaps repositories, you agree to abide by the copyright agreement and release any contributors from any liability." Now I understand why that statement is there, but when someone dies using this "product" that hasn't been approved by the FDA; well let's just say I hope all parties involved have really good umbrella policies, because I'm not too sure that's going to hold up in a court of law.