Help a n00b with brain fog get set up?

Hello. I have myalgic encephalomyelitis/chronic fatigue syndrome. It’s a neuroinflammatory condition whose distinguishing symptom is Post Exertional Malaise: if a certain threshold of physical or mental exertion is exceeded, a “crash” occurs consisting of flu-like symptoms. Every time you crash, you may have a permanent lowering of your exertion threshold and/or a worsening of your overall baseline and crash symptoms.

I would like to start gathering some data that can help me stop before my exertion threshold and avert PEM. I am attempting to do this in a rudimentary fashion with a heart rate monitor, but there could be all kinds of factors that could be predictive – temperature, for example.

One of the symptoms, unfortunately, is brain fog, which means that I am not currently able to do the level of research and cogitation it would require to teach myself the entirely-new-to-me area of QS and sort through the available tools to create a useful setup.

Would anyone more experienced be at all willing to design something for me? I would be able to pay to some degree.

1 Like

I think the biggest hiccup for ME/CFS is that there aren’t a whole lot of things which we can actually continuously measure through the day and avoiding PEM requires that sort of continuous measurement because avoiding it requires that you catch yourself at the point where you’re starting to have done enough but not too much.

Most QS projects have a single daily measurement or a few isolated measurements through the day, because there just aren’t that many things which we can measure continuously through the day without a high burden on the person doing the measuring. Even continuous HR measurement is pretty fiddly, as I’m sure you’ve discovered - I do HR pacing too and the amount of fiddling around that’s necessary to do this at home and keep everything charged and having alarms at the right levels and have it working the way I want it to be working is definitely more than I’d like!

Having the limitation of continuous or regular measurements throughout the day pretty much limits you to the things a smartwatch or similar can measure, although those are expanding over time they’re still a lot more limited than we’d like them to be and some of them still really only work if you sit still or trigger them off manually.

Hope this helps a little.

Do you have any historical data about when you crash / flare up? What about biometric data from a wearable device?

If you don’t have either, I would start tracking that now so data analysis can be performed in the future. Keep it simple - just a spreadsheet where you have 1 or more columns where you track your symptoms. In addition, wear a device like a Fitbit, Garmin, Withings, Whoop, Oura, etc.

Once you have enough data, statistical analysis can be used to investigate what correlations exist in the data, i.e. what may best predict your future crashes. The goal in your case may be to find a good predictor to watch each day as a leading indicator of your symptoms. I’m happy to help with that analysis once you have the data.

Hello. I’m sorry can’t answer your question, I’m searching for answers myself (and I feel very similar).
Have you tried welltory? It might help you. I have found it useful.

Thank you

Thank you, much appreciated.

It’s definitely a tough one. What’s welltory?

It is application for mobile phone that uses your phone camera to measure HRV (heart rate variability) and from that calculates several key parameters regarding how your body currently feels… Very useful

https://github.com/ran88dom99/QS-data-flow-network-graph in about a year this will have all your options, from sensor to csv file

The HRV Logger app for iOS just added a new Detrended Fluctuation Analysis (DFA) measurement of Heart Rate Variability (HRV). I have been looking at it for determining aerobic threshold. If you are measuring continuous heart rate data it would be interesting to see if your overexertion crossed a specific DFA threshold. If so the next step would be to contact the developer and see if they could set up an alarm on your phone to ease up when you are close to crossing your threshold.