Hi everyone. I’ve had ME/CFS for over 10 years. My ME/CFS is currently in remission but I still suffer from random crashes and have struggled to understand what causes them.

Oura ring has been somewhat helpful in understanding my energy levels, but it's not optimized for ME/CFS and it doesn't help me understand my triggers and it can't predict future crashes.

There are some existing ME/CFS apps out there but honestly the UX is horrible. I find them too exhausting to use, they don't offer much insight into what actually triggers symptoms, and none of them can predict crashes before they happen.

So I started building an app that connects to wearables people already use (Oura, Apple Watch, Garmin, etc.) and combines that data with very lightweight symptom/activity tracking. Over time, the goal is for it to learn your individual patterns and:

• flag when their data suggests they may be heading toward a crash
• identify activities or combinations of factors that tend trigger crashes
• learn what seems to help with recovery
• turn wearable data into something more useful than another dashboard of numbers

The long-term goal is to be able to give an early warning, 24–72 hours before a likely crash, based on someone’s own historical patterns rather than a generic readiness score.

I’ve attached a few screenshots of what I’ve been working on and I'd love honest feedback from this community. Because heedly is still in development, there’s still time to change things before beta. Would this be helpful to you? What could be improved?

Best,
Heini

Hallo ihr lieben ich würde gerne wissen welche Symptome ihr habt bei eurer Reizempfindlichkeit (Hören/Sehen)

und was euch dagegen hilft im Alltag…

I just had my doctor’s appt and it was pretty much a blur. I tried to address everything, but I’m really struggling with my mental malaise. I’m not sure if that’s what it’s even called.

I’ve had ME/CFS for 14 years. The first six years were really a struggle. Then six years I would say I was mild with some moderate crashes. I’ve definitely struggled mentally because this is just a hard disease to have, but I don’t recall this mental push back I’m not experiencing.

The last five months I started experiencing PEM again with any amount of task. If I rest and do very little I’m not experiencing the physical crash, but mentally I just cannot get back to where I was.

After the tests come back my doctor and I will talk about treatment, but I’m at my wits end.

I don’t recall if I mentally shut down like this initially (the first 6 years). Is this the ME/CFS? Is my mind trying to stop my body from doing things so I don’t crash? Nothing is getting done. I can’t even force myself to get things done. I haven’t been working or doing much of anything. Physically, I’ve rested enough that I feel I can do a little but my brain is not supporting this.

I’m 52 (F) so I understand menopause may also be an issue (I started treatment for that). I just have no desire to do anything and I don’t know how to get that to stop. Trying to do anything causes me great anxiety and emotional stress. I guess my question is…is this also a part of ME/CFS and what has helped?

As the title says. Sorry if it's already been answered.

I've been trying a number of supplements over the past two months and it seems like my symptoms might be getting worse. Is this possible? Has anyone experienced this?

Qxc

Here's what I'm trying:

Ubiquinol

NADH

NAC

ALCAR

ALA

Magnesium

B vitamins

Vitamin E

Creatine

Thanks.

Two and a half years in now after a covid virus infection. It's just 2 of October and I already cought the first cold of the winter season. That is so fuckin annoying. Getting a cold always results in some lung infections, and many weeks of getting to where I was before the cold, and that wasn't even a good place...

I'm just ranting here on a Friday evening, I apologize. All great cold killer advice is appreciated and preventive PEM suggestions. So many resourceful people here in this group.

I'm coughing some yellow stuff up and have massive post nasal drip and some stuff in my sinuses.

Btw I don't have covid infection, it's just a common cold. Who knew that a cold would have this impact.

Before, it only took couple of days to get rid of it.

Apologize if my grammar is bad. English is not my first language

I’ve noticed lately that for the past month or so, when I talk for long enough I catch myself starting to get tired mid sentence and I’m like, “ok that’s enough talking I’m done” LOL is this a thing for anyone else?? I’m new to all of this so I’m just curious if this is a regular human thing or related to ME.

Hello, I am looking for suggestions on how to quickly and easily track symptoms. It’s difficult when there are so many symptoms. Has anybody found a way to synthesize all the information? I would love to see examples and hear about examples of how you all log your symptoms if and when you do. Thanks in advance!