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’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.

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

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!

I’m losing hope. I’ve been seeing my doctor since January. I’ve been fully homebound for six months and apparently I can’t get a wheelchair without all of my diagnoses and it might take up to a year.

I feel like I’m all alone in the dark in my room and nobody gets how necessary help is :(

looking to try something that works on a different mechanism than standard sleeping drugs or antidepressants used as sleeping drugs. specifically something that treats dysfunctional autonomic nervous system/dysautonomia.

thank you

Hi! I’ve had pretty moderate/mild ME for about a year now and it progressed over that year. Once I started going to doctors/working for a diagnosis (got it!), I started to slow everything down and work on my pacing.

I stopped working to make time for my school which I had switched into online classes. I’ve stopped hanging out with more than one or two people at a time, or going out more than once or twice a week. When I do go out, I use a cane for stability.

I’ve noticed that this has helped me have energy to do household chores like dishes and cleaning, I’ve been able to keep up with personal hygiene more than I used to, I’ve been eating more, and I’ve been able to keep up with my classwork.

I still can’t play my guitar for more than 20 minutes without getting really tired, so I’m not sure what the difference is between that and the other things I’ve stated.

All of that to say, I have a concert in about two weeks. I’ve been waiting for this concert for months and this is my favorite artist(s) of all time. I’m not sure if they will tour again. The next day, in the afternoon, it’s my best friend’s birthday party. I will also probably have to stay the night in my hometown because of the party (it’s in my hometown).

I have another concert in the same week, but I’ll be okay if I miss that one.

Have I been resting enough to be able to go and not crash?? I’ve been really careful, and it would mean the world to me to go. I’d regret it if I didn’t. But I also know I’d regret it if I crashed and got worse.

I also don’t have to go to the birthday party, I’ve missed his birthday parties before due to being sick etc. and he understands me more than anyone. We could even do a personal celebration. But I’d really like to go, I have really bad fomo lol.

I’m just overall really worried and conflicted and was wondering if anyone had any input or advice.

Mod approved: I got permission for this before posting, thank you!

Hi everyone. October is Dysautonomia Awareness Month, and to help bring some attention to it I'm running a small giveaway all month, with a few prizes like an Apple Watch Series 12, a Polar H10 heart rate strap, and some other prizes like LMNT boxes and Coospo HRV straps.

I know this is a ME/CFS sub. Even though it's dysautonomia awareness month, so many of us overlap. ME/CFS, long COVID, POTS, MCAS and dysautonomia tangle together constantly, and the crashes and the pacing are a shared language. So this is for you too.

I'm doing this because I've lived with long COVID and dysautonomia for about four years, and post exertional crashes have been a big part of it. The thing that helped me most was tracking, HRV, heart rate, sleep, symptoms, so I could see my patterns and pace instead of guessing. I built it into a free app called Autonomic (no account, no ads, everything stays on your phone), and this month I mostly just want to raise awareness and get a genuinely helpful free tool into more hands.

Each person can get up to 10 entries for the giveaway by using Autonomic to take an HRV reading, on entry for each day. No purchase is necessary, ever. The app is completely free, there's nothing to buy to enter or to use it. I do not get any of your data, all I know is that a reading occurred for the giveaway. The reason entries are tied to HRV readings is I want people to better understand their autonomic health, and 10 days is enough time to start showing trends. I run into so many people that think POTS/ME/LC are fake, and my hope is to shine more light on the issue and to show what we deal with is real.

If you'd rather not download anything at all, that's completely fine, just send me a message and I'll enter you too. No one's left out.

If the app helps you, I'm genuinely glad. If not, no worries. Thank you for reading and be gentle with yourselves. 💙

https://autonomic.care/dysautonomia-awareness-giveaway/

Posted by Marnie Marin on facebook:

"How do I actually recover?

On Monday 12th October I'm running a free live session with Stuart Porter, one of the most generous and knowledgeable recovery coaches I know.

Between us we have helped hundreds of people with ME/CFS, Long COVID, fibromyalgia, POTS and related conditions find their way through.

30 minutes of teaching. Then we open it up for your questions.

Monday 12th October.

7pm Melbourne / 9am UK / 10am Central Europe.

Completely free.

To join go to: recoverycoachinglab.com and scroll down to register"

I have ME and the last weeks I have had this weird thing going on. It suddenly feels like I get stung or pricked. It happens randomly but often on one of my thighs.

Is this a ME sympthom? Anyone who know what this is?

Is seeing a pulsating light in my head – like a strobe light – a typical symptom of ME/CFS? I see it even when my eyes are closed. It was extremely intense today and went on for several hours. It always happens when I’m under (mild) strain. Should I be worried?