Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

[Trish]

I think the severity levels on the 2021 NICE guideline are useful for showing how severe ME gets.

 

[Kalliope]

The charity "Fokus på ME" has shared an update from the researchers about the Fitbit-study.

Oppdatering frå Haukeland om Fitbit-studien september 2022, på norsk:

google translation: Update from Haukeland on the Fitbit study September 2022...

quotes:

The purpose of this study was to investigate whether it is feasible and useful to use activity bracelets to monitor variations in activity in a clinical study, as well as to form an impression of natural variation in symptoms and activity level in a group of ME patients over time.

...

The article also describes that the level of activity and the patients' self-reporting fluctuates in many patients over time.

...

The Fitbit study does not say anything about the usual or average number of steps for ME patients; patients with mild ME disease were overrepresented in relation to severe disease, as we would like to see if we could capture greater and lesser variations in function. We also found that the accuracy of step measurement was variable.

 

[Ariel]

There's also an entire page about severe ME. The information's definitely out there. We just need clinicians to be up to date.

I also think the severe ME page is a good development but it's just quite hard (imo) to navigate to. Is it just me? Maybe it would be possible for them to give it more prominence and make it more obvious it's there?

 

[Tom Kindlon]

The charity "Fokus på ME" has shared an update from the researchers about the Fitbit-study.

Oppdatering frå Haukeland om Fitbit-studien september 2022, på norsk:

google translation: Update from Haukeland on the Fitbit study September 2022...

quotes:

The purpose of this study was to investigate whether it is feasible and useful to use activity bracelets to monitor variations in activity in a clinical study, as well as to form an impression of natural variation in symptoms and activity level in a group of ME patients over time.

...

The article also describes that the level of activity and the patients' self-reporting fluctuates in many patients over time.

...

The Fitbit study does not say anything about the usual or average number of steps for ME patients; patients with mild ME disease were overrepresented in relation to severe disease, as we would like to see if we could capture greater and lesser variations in function. We also found that the accuracy of step measurement was variable.

I imagine this article in English from October 3 is similar:

.

 

[Karen Kirke]

I have been meaning to post these figures I made years ago showing change in physical function scores and steps over 6 months without intervention in Rekeland et al's cohort.

These tangles helped me understand that lots of people's functioning jumps around a lot, while others' functioning, including my own, stays roughly the same.

 

[Karen Kirke]

Fixed Y-axis label on steps chart.

 

[Ravn]

These are great @Karen Kirke
Should be required reading for anyone planning an intervention study