We've been discussing on another thread the notion that it would be a good idea to establish better data about the natural course of ME over time via the use of actimeters (a popular, commercially available one is the Fitbit). This would help in the design of RCTs.
Anybody else know of any more?
Jonathan Edwards said:A hundred would probably do. Maybe we should write a grant application - if we could get 100 Spanish PCEM (personas con encefalitis miálgica) and 100 Norwegian MMME (mennesker med myalgisk encefalitt) we could get an EU grant. I was never that good at that but I might know a man that is.
Does anybody know if these Fitbits have actually been used in trials on PWME yet, or is everyone just talking about it?
Sasha said:I don't know about Fitbits specifically but actimeters were used in a European trial of CBT &/or GET that preceded PACE and demonstrated a lack of effect (hence the scandal over them being planned for PACE but dropped).
I think Fluge & Mella are using actimeters in their current Rtx trial (which you'll know all about).
I think that if they have been used up til now it will most likely have been in the context of CBT/GET trials and possibly sensible studies of activity in relation to the CPET/VO2 max PEM work.
@@Tom Kindlon? Do you know about this?
...actually I just searched within the forum and here's Dr Enlander in NY using Fitbits in his research:
http://forums.phoenixrising.me/index.php?threads/is-cdc-out-to-bury-pem.31292/page-5#post-481650
Anybody else know of any more?