JupiterDX App for MECFS/LC

J

Jaybee00

Senior Member (Voting Rights)
Don’t know anything about this—but in general would prefer treatments over apps.

https://www.jupiter-dx.com/


The co-pilot for your chronic illness.

Monitor your energy, track symptoms, and receive tailored insights on managing your Long Covid or ME/CFS. By integrating wearables like Apple Health, Fitbit, Garmin, and Polar, we're building the most complete Long COVID care platform.
 
Milo said:
Not sure how much it will cost. Is this a money making venture?
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Unclear - there are many patients / people-living-with involved (current or former) and talk of giving back to the community. There is a possibility it will be free, but there are also entrepreneurs involved so it could be philanthropic or not: more likely not I suspect.

From Why I'm Building JupiterDX: My chronic illness journey, and how it led me to start JupiterDX —

Over the past year, I’ve been searching for ways to provide respite for those who are currently experiencing what I did all those years ago. Today, I’m immensely proud to be building JupiterDX, a health analytics platform that helps patients suffering from Long COVID, ME, CFS, and other chronic illnesses manage their care. Backed by Drive Capital, a leading investment firm in the Midwest, we hope to use our products to ease the burden of managing a chronic condition.
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But I agree with @Jaybee00 and @Milo - the ROI is in the fundamental science.
 
I’d love to see technology that could aid in helping me pace. But I’m skeptical that current tech has the value we’d like it to have.

Pedometers, HR, and HR variability in my Garmin band haven’t been significantly more helpful in preventing crashes than just gauging how I feel waking up and how my body responds to first activity in the morning.

Integrating data from devices I use would give additional insight into how much activity I’m engaging in, but the impact of that activity wouldn’t be the same for me as for another person, and not necessarily the same even for me over longer time frames.

I would however love a band that was more configured for the needs of sick people, like having HR threshold warnings for example. That seems to be part of the appeal at least of these new services, tailoring that experience more to our needs.
 
There was another group working on an app—maybe Australian? I posted on this a couple of years ago—maybe someone else can remember/locate the thread?
 
It may be that apps will help some people structure their experience so they can learn quicker how to monitor their own pacing needs, but I agree with what others have said elsewhere here, that there are no definite rules of pacing, rather that each individual eventually must learn to interpret their own responses to activity and rest and develop awareness of their own bodily PEM warning signs.

I think apps and biofeedback for some will provide a way in, but not a final answer to pacing as there is not likely to be a simple relationship between such as heart rate or exertion. However such monitoring might provide clues to other factors, for example I found activity and symptom monitoring lead me to realise that sudden dips were diet related and to identify my food intolerances.
 
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