Accurate and Objective Determination of ME/CFS Disease Severity with a Wearable Sensor. Palombo et al. 2020

More brainstorming [I'm a member of this group https://europeanmecoalition.com/]:

• does this study show that questionnaires overestimated activity?
• does this mean that activity monitors would, in general, make it more difficult to (wrongly) argue that someone has recovered (post GET & CBT) and therefore shouldn't get social security assistance/benefits?

 

This is why it's so difficult, and needs several types of measurement. I only experience OI when standing, so I not only spend all of my waking time with my feet on the floor, but around 20% of my sleeping time too. I can sleep comfortably sitting up on the sofa with my head supported by a cushion. As soon as my legs are raised the muscle pain and peripheral neuropathy kick in, and when I lie down fully the sweating starts, so getting off to sleep becomes much harder. I usually start my night's sleep sitting up, and only go to bed when I've got to the really groggy stage.

I wear a Fitbit, and the step count's hopeless because it records arm movements and travel in my wheelie as steps. The only thing I have at the moment that shows my activity accurately is the heart rate monitor. (It also shows when I'm in PEM, as my resting heart rate goes up considerably.)

 

If it is what you are asking, there have been a couple of studies where people have said in questionnaires that they are doing more but actimeters have shown that their activity levels actually dropped. That is why actimeters were dropped in the PACE trial. In asthma trials people said that their asthma was improved in questionnaires but lung function tests showed no difference. Basically, people are very bad at estimating things which is why objective measures should always be used.

For your second question, activity monitors are a two edged sword. I wear a fit bit and can use it to track how active I am because it counts arm movements and when I am in my wheelchair as well as steps all of which tire me, but to an outsider it would look as if I was able to do much more than I can. (If you are doing 10000 steps a day the difference it makes is negligible but if you are doing 500 to 1000 it does change things)

 

Paper now published

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02583-7