the Freeme app

[Laura S]

Hello folks, I wanted to share that I have serious concerns about the Freeme app designed for ME/CFS. I trialed it. It seems to discourage pacing and assume that symptoms are completely neuroplastic. I don’t doubt there is an element of this in ME, but unless one introduces activity in a paced way you are sure to crash. I found that it fed into my denial about my condition rather than acceptance and led me to overdo.

 

[PMA]

Sounds very unhelpfull.

I have been using the Visable app for the last 6 months and have found it good. It sets goals by putting an upper limit on the amount of activity you can do in the day. Its made by people with our problem so there is a clear understanding behind its design.

It needs a HR band and a subscription to work fully but i think it is worth it. Going to try and do a propper review at some stage.

 

[temirok299]

Thanks for the heads up, definitely staying away from that one. @PMA did you find the HR alerts accurate on Visible? Been on the fence because of the monthly sub, but honestly having a hard cap on activity sounds like exactly what I need right now.

 

[AnniePipsqueak]

Thanks for the heads up, definitely staying away from that one. @PMA did you find the HR alerts accurate on Visible? Been on the fence because of the monthly sub, but honestly having a hard cap on activity sounds like exactly what I need right now.

Hi @temirok299 I've been using the Visible device and app for 8 months. I have moderate to severe ME and was struggling with pacing, and this has helped me to reduce the number of times I crash, so I'm feeling more stable and more moderate than severe now. I bought the band and a 1 year sub as a bundle. You wear the band for 4/5 days and then it analyses your symptoms (self reported) and then sets a daily energy budget, based on heart rate levels that are individual to you, which you can tweak up or down if you think they are slightly out.
It sends a notification to my phone only after I've been in an activity zone for 3 minutes. I can't actually stop you doing too much, but you can see how your budget is going for the day. You can also tag time periods of high exertion (eg. showering) so you can see how much energy that one thing has cost you.
I would definitely recommend it to everyone who struggles with pacing! Yes, it's not cheap but could you say ask family/friends to chip in as a gift maybe? (Christmas is coming!! 😊)
It's helped reach a reasonably stable point, and that makes a huge difference to my mental health and acceptance of this horrible condition.
I hope this helps, and wish you well x

 

[Laura S]

Sounds very unhelpfull.

I have been using the Visable app for the last 6 months and have found it good. It sets goals by putting an upper limit on the amount of activity you can do in the day. Its made by people with our problem so there is a clear understanding behind its design.

It needs a HR band and a subscription to work fully but i think it is worth it. Going to try and do a propper review at some stage.

Hi. I’ve started using a free app called Fatiguesense that links with my watch. So no extra device needed. I find it more helpful than visible.

 

[PMA]

Hi @temirok299
I find the HR values to be pretty acurate within 1-3 BPM of the reading i get from a polar chest strap at a range of HR levels.
Overall i have found the app usefull. Particularly during the first 3 months when it showed me where i was expending energy. I had no idea how much i could burn through just stressing about things. It also revealed my waves of tiredness some days were because my HR was droping when i stood up to do things.
The app is good at motivating you to stay within your energy budget.
The one down side for me is it can become a bit of an obsession particularly when i am going over budget. Some days i just have to put the phone away.

Hope that helps