This is the gap I live in clinically. A patient can have "normal" labs and still be profoundly sick, because reference ranges describe the average of who got tested, not what is optimal for her body. I spent years as an endo patient being told my numbers were fine while I could barely function. Wearables are filling a vacuum medicine created by never answering "normal for whom?"
I’m in the same boat you’re in and I couldn’t agree more with you. Thank you for sharing this piece for free. This is a serious issue (you point out several, actually) that few outside the chronic illness community understand.
The prevalence of adrenal insufficiency, the lack of research and development for those who have it, and the lack of educated professionals - even in emergency departments - is one of many examples of how our health care system neglects women and the chronically ill.
I’ll be deeply relieved if the cortisol tracker becomes a reality. I;ve often wondered why we can’t have something like this now that we have a wearable blood glucose tracker for diabetics. I have had adrenal insufficiency twice and my understanding is that I should probably be on cortisol permanently. However, I had a repeat ACTH test years later which was ok so now I’m not on treatment any more and won’t be retested unless it becomes an emergency. I find it hard to recover from operations etc and I’m convinced this would be easier if they’d agree to IV fluids with IV hydrocortisone by default.
If I had a tracker that showed the dips more clearly I would a lot better off.
I have friends who’ve been diagnosed with heart conditions thanks to the ECG app on an Apple Watch!
you raise some interesting - and very valid - points about the discrepancy in pace between medical and wellness research, but the thing I'm most surprised about is your take that we *can* measure these things in first place. I have been highly sceptical of any of these devices because I'm just not convinced we've figured out how to take measurements with sufficient signal to noise ratio to be sure we're measuring what we think we are in first place.
I don't work in this space myself, I know several people with PhDs in science, maths or engineering who have gone from academia into this space, and the only things I've heard so far are either them pulling their hair out in despair over the poor science practices being applied - the data is shit, there's just a ton of processing and algorithms being applied on top to make it look meaningful - and in one case I once knew someone who was blatantly like "haha it's hilarious how much money I can make by selling bullshit to people who have no clue about the science". I kid you not, this is a sentence I heard over a drink at a pub.
so, to me, the fact that you seem to think that this space has actually figured out how to measure something meaningful is news. are there publications around this? I know academia is inefficient and the peer review system can be infuriating in its own way - particularly now with AI shaking things up - but for better or for worse, publishing through peer-review is how you get results recognised in the scientific and medical community so others can try to benefit from it too. any time I see a commercial product that claims to have tested its product scientifically but then the company refuses to show any data, or publish its results, I have zero interest in engaging cause it's unethical in my opinion - if you're saying you want to help people, but then don't make the science behind your product available to the wider community, you're just saying that as a sales tactic, not because you actually want to help. if you did, you'd go through the publication process in parallel - I'm not even saying you need to wait to make something commercially available until the peer review process is done, go ahead and create the product, but there's still no reason to then also publish that in some way *if* helping people truly is your goal. imo, gatekeeping and helping people just aren't compatible.
Thank you for this comment and I completely understand where you are coming from. As a disclaimer I know nothing about this specific company's data (Lume) that I used as an example, so I cannot speak to the validity of their measurement claims. Are there devices that don't match up to what they promise? Absolutely. I can understand where the skepticism and criticism comes from. But I have also seen companies that do have good data and have published.
Generally, what I've seen from a publications perspective is that it will usually be a paper that supports the device/technology behind it and sometimes comparing to the equivalent test (usually a non-wearable version or clinic similarity) for accuracy. But not in the context of a specific disease state.
The reality is that to succeed in the wellness space, you don't need it to be recognized as legit by the scientific or medical community. But I do have a lot of respect for companies that have the data to back it. When someone can succeed in a (larger) industry and market without the extra data and evidence, what would motivate people to instead go into the medical space where it requires more data, a lot more money, more regulatory hurdles, etc?
Surely someone is analyzing all the “well” data from these devices? Isn’t that a starting point? As the volume of “well” data approaches population-level, you would have some reference metrics for comparison.
Glad it's helping you track patterns! Their own disclaimer says the test isn't intended to diagnose or manage adrenal disorders, and without standardized references ranges could unfortunately lead to poor management and poor disease outcomes for patients with AI.
Ya well my endo let me go because he wouldn’t run night cortisol he hasn’t seen it when it’s off. My old dr ran it early 2000s and I have a tumor I’m sure it’s intermittent
I only check sometimes when I’m really struggling.
We all know that’s a cya until they have better studies :/
I can actually tell just by the lines if it’s off a bit (the darkness changes) the thing looks like a pregnancy test. The ai is just using your phone to scan the lines.
This is the gap I live in clinically. A patient can have "normal" labs and still be profoundly sick, because reference ranges describe the average of who got tested, not what is optimal for her body. I spent years as an endo patient being told my numbers were fine while I could barely function. Wearables are filling a vacuum medicine created by never answering "normal for whom?"
I too have adrenal insufficiency,EDS, Sjogrens Fibromyalgia and a few others this would be very beneficial for folks like us.
I’m in the same boat you’re in and I couldn’t agree more with you. Thank you for sharing this piece for free. This is a serious issue (you point out several, actually) that few outside the chronic illness community understand.
The prevalence of adrenal insufficiency, the lack of research and development for those who have it, and the lack of educated professionals - even in emergency departments - is one of many examples of how our health care system neglects women and the chronically ill.
Because medicine itself is simulation
https://substack.com/home/post/p-206503491
I’ll be deeply relieved if the cortisol tracker becomes a reality. I;ve often wondered why we can’t have something like this now that we have a wearable blood glucose tracker for diabetics. I have had adrenal insufficiency twice and my understanding is that I should probably be on cortisol permanently. However, I had a repeat ACTH test years later which was ok so now I’m not on treatment any more and won’t be retested unless it becomes an emergency. I find it hard to recover from operations etc and I’m convinced this would be easier if they’d agree to IV fluids with IV hydrocortisone by default.
If I had a tracker that showed the dips more clearly I would a lot better off.
I have friends who’ve been diagnosed with heart conditions thanks to the ECG app on an Apple Watch!
you raise some interesting - and very valid - points about the discrepancy in pace between medical and wellness research, but the thing I'm most surprised about is your take that we *can* measure these things in first place. I have been highly sceptical of any of these devices because I'm just not convinced we've figured out how to take measurements with sufficient signal to noise ratio to be sure we're measuring what we think we are in first place.
I don't work in this space myself, I know several people with PhDs in science, maths or engineering who have gone from academia into this space, and the only things I've heard so far are either them pulling their hair out in despair over the poor science practices being applied - the data is shit, there's just a ton of processing and algorithms being applied on top to make it look meaningful - and in one case I once knew someone who was blatantly like "haha it's hilarious how much money I can make by selling bullshit to people who have no clue about the science". I kid you not, this is a sentence I heard over a drink at a pub.
so, to me, the fact that you seem to think that this space has actually figured out how to measure something meaningful is news. are there publications around this? I know academia is inefficient and the peer review system can be infuriating in its own way - particularly now with AI shaking things up - but for better or for worse, publishing through peer-review is how you get results recognised in the scientific and medical community so others can try to benefit from it too. any time I see a commercial product that claims to have tested its product scientifically but then the company refuses to show any data, or publish its results, I have zero interest in engaging cause it's unethical in my opinion - if you're saying you want to help people, but then don't make the science behind your product available to the wider community, you're just saying that as a sales tactic, not because you actually want to help. if you did, you'd go through the publication process in parallel - I'm not even saying you need to wait to make something commercially available until the peer review process is done, go ahead and create the product, but there's still no reason to then also publish that in some way *if* helping people truly is your goal. imo, gatekeeping and helping people just aren't compatible.
Thank you for this comment and I completely understand where you are coming from. As a disclaimer I know nothing about this specific company's data (Lume) that I used as an example, so I cannot speak to the validity of their measurement claims. Are there devices that don't match up to what they promise? Absolutely. I can understand where the skepticism and criticism comes from. But I have also seen companies that do have good data and have published.
Generally, what I've seen from a publications perspective is that it will usually be a paper that supports the device/technology behind it and sometimes comparing to the equivalent test (usually a non-wearable version or clinic similarity) for accuracy. But not in the context of a specific disease state.
The reality is that to succeed in the wellness space, you don't need it to be recognized as legit by the scientific or medical community. But I do have a lot of respect for companies that have the data to back it. When someone can succeed in a (larger) industry and market without the extra data and evidence, what would motivate people to instead go into the medical space where it requires more data, a lot more money, more regulatory hurdles, etc?
Surely someone is analyzing all the “well” data from these devices? Isn’t that a starting point? As the volume of “well” data approaches population-level, you would have some reference metrics for comparison.
I wonder if there's a chance this tech can be used to do some of the reference range work easier and cheaper. That would be a big win.
There’s a Canadian company (they ship to the USA) that has saliva home tests that take 20 min
It’s called Eli health and they’ve been helping me.
I have had some crashes and tend to get high nighttime cortisol.
Glad it's helping you track patterns! Their own disclaimer says the test isn't intended to diagnose or manage adrenal disorders, and without standardized references ranges could unfortunately lead to poor management and poor disease outcomes for patients with AI.
Ya well my endo let me go because he wouldn’t run night cortisol he hasn’t seen it when it’s off. My old dr ran it early 2000s and I have a tumor I’m sure it’s intermittent
I only check sometimes when I’m really struggling.
We all know that’s a cya until they have better studies :/
I can actually tell just by the lines if it’s off a bit (the darkness changes) the thing looks like a pregnancy test. The ai is just using your phone to scan the lines.