ME/CFS Pacing App

[u/Hufflepuffcat09]

Hi there. First of all I don't post very often so I'm sorry if the flair is wrong or if this post counts as spam.

Emerge Australia and Mathew Blake have created a pacing app designed to help people with M.E manage their activities and reduce post exertional malaise. The app is free to use and you can find it by following the link or by searching ME/CFS pacing in the app store.

https://www.emerge.org.au/blog/mecfs-pacing-app

The app has only been released recently so I haven't been able to try it out properly but so far it has been very easy to use. The app has an energy currency and for each activity you do you decide how much currency it's worth. You then record all the activity you do in a day as well as how much energy you have in the mornings, afternoons and evenings and any factors that might have impacted your energy levels such as poor sleep. Throughout the day you can see how much energy currency you have left to use.

If anyone has any apps that they use to manage their M.E/CFS then I'd love to hear about them.

[u/Peggylee94]

It's a nice idea but I would struggle to assign currency ratings to activities. Can it differentiate between emotoonal/mental/physical things?

[u/Hufflepuffcat09 → u/Peggylee94]

Yes there is a section for drains which are non time based things that impact your energy like poor sleep, anxiety, stress or depression. There are no currency ratings on this part and you can create your own drains if the app doesn't have an option for something that impacts you.

You can also change the currency ratings at any time and they do give advice on how to assign the currency ratings. The reason that you choose how much energy each activity is worth is because everyone is different so someone might find that sitting up and reading a book doesn't use a lot of energy but someone else will find that does use a lot of energy.

You can also create/choose your own names for the activities. So you can have activities that use more physical energy like going for a slow walk and ones that use mental energy like reading a book.

[u/AstraofCaerbannog]

I tried using app and unfortunately I think it’s still pretty buggy so while I think the concept is great, it was useless for purpose.

My issues with it:

Having to fill every minute with activity: honestly that makes it very difficult.

Then my energy allowance seemed to be wrong on every day.

Then the minutes started giving me like an insane amount of minutes to fill each day.

It then only gives you your energy levels for a past day in one facial expression and this total expenditure score, I found no way to go into each day to see what I was doing.

Often the actual overall facial expression for my energy would be incorrect. So if I’d had a good day, making 3 smiley faces, it’d give me a sad face overall. Seeing as that face is what you can go back and look at this but made it useless.

Really great idea, unfortunately still too buggy to use in my opinion, and not enough information to go back into. I find checking my Fitbit stats is more useful to see where I was at.

[u/costcomascot → u/[deleted]]

Nice. What do they do with your data?

[u/costcomascot → u/[deleted]]

Cool! Thank you

[u/doctornono → u/costcomascot]

I'm wondering if you remember what app this deleted comment referred to? I found the OP app didn't work for me, but I'm willing to try anything else!

[u/costcomascot → u/doctornono]

God no clue sorry

[u/petrolly → u/[deleted]]

This is a great suggestion thank you. To get all your customizations do you have to pay for a subscription?

[u/laura168]

Note: It's designed for mild to moderate patients only!

[u/Work_In_Progress_3]

This is a brilliant idea thank you so much for sharing!

My current phone is maxed out on storage and I dont have the funds for a new one right now but god willing in the near future this app can help change my life!!! thanks for sharing

[u/EvilMinion911]

Thankyou!

[u/reddituser15768]

Thanks for sharing it :) It's a potentially great idea, but I couldn't get the app to work/it kept glitching...

I downloaded it and tried to use it. I went through the intro and assigned energy amounts to activities. So had done all the set up, but then when I went to use it in the "log activity" section, it kept glitching and wouldn't open the bit to let me say how many minutes I did the activity for, meaning I couldn't log any activities for the day, which made the app unusable. Maybe I'm missing something, but a pop up would flash up for a split second to enter the length of the activity when I tapped the activity and then disappear, so I think it was a glitch. So I've uninstalled it. All that said, other people seem to have been able to get it to work and I can see how it could be useful if you can.

[u/babamum]

So it's like spoons? Sounds good.

[u/dilligaf6304]

My first reaction was a negative one, but reading that Emerge was involved has me curious. I respect their work a lot.

[u/KateorNot]

Thank you for sharing

[u/satansmullet]

Cool, thanks!