What ME research has used actimeters/Fitbits?

[Sasha]

Those are all very good points, @taniaaust1.

 

[Esther12]

It depends on whether or not the questionnaires are being applied after extensive brainwaishing (Dutch CBT). Dutch CBT patients are directly encouraged to stop seeing and labeling themselves as ill or disabled, and to ignore symptoms and attribute them to something other than illness. Thus after many of these sessions they will often be obedient little patients and exaggerate their physical capacity quite a bit on questionnaires.

This seems to be true more broadly for psychosocial interventions for CFS, MS fatigue, post-cancer fatigue, chronic unexplained fatigue.

I think that the chronic unexplained fatigue study discussed here also indicates a discrepency between changes in self-reported activity level and pedometer measured activity level: http://forums.phoenixrising.me/inde...program-the-4-steps-for-unexplained-cf.32694/

I've forgotten most of the details there though, and am caught up in a mild migraine right now, so could be getting stuff wrong.

 

[Valentijn]

The actometer I used for a couple days divided activity into three categories based on how intense it was. Almost all of my activity was in the lowest category, and just a little in the medium category. I think it generally missed stuff like fidgeting, but would always pick up bigger movements like walking or lifting my arms, etc.

 

[Jonathan Edwards]

There seems little doubt that there are all sorts of tricky questions about whether an actometer measures something worth measuring. My original query was about whether it would reflect major swings in ill health due to ME over a period of months. I still think it might but analysing the data might be a real problem.

 

[Sasha]

There seems little doubt that there are all sorts of tricky questions about whether an actometer measures something worth measuring. My original query was about whether it would reflect major swings in ill health due to ME over a period of months. I still think it might but analysing the data might be a real problem.

I think that most PWME might be able to push themselves briefly but payback will generally happen within a day or two. Most of us probably have enough experience to push things far enough to avoid precipitating a major crash. My guess is that if the data are smoothed over the scale of a week or so, it would be easy to see major swings. I think it would be quite likely that for most of us, what such data would show is that we're never able to be active above a certain level. I think that would be very useful in the context of providing a baseline for what to expect in treatment trials.

 

[Jonathan Edwards]

I think that most PWME might be able to push themselves briefly but payback will generally happen within a day or two. Most of us probably have enough experience to push things far enough to avoid precipitating a major crash. My guess is that if the data are smoothed over the scale of a week or so, it would be easy to see major swings. I think it would be quite likely that for most of us, what such data would show is that we're never able to be active above a certain level. I think that would be very useful in the context of providing a baseline for what to expect in treatment trials.

Yes, that sounds a good reason to do a time based calibration study.

 

[Keela Too]

I think I can chip in here. I have been wearing a Fitbit since Nov 2012. I have found it extremely useful in helping me to avoid a push and crash cycle. Sadly I still haven't avoided decline over time, but I honestly believe it has helped me to minimise my physical losses.

However the Fitbit has a few quirks. One being the fact it collects "steps" when I ride my mobility scooter over rough ground! (So I now clip it to the gate and collect it on the way back )

I wrote a bit about its use on my blog, and there is also a scatter graph there of every daily reading I've taken.... It shows both how my capacity to do stuff has dropped, but also my improved day to day consistency.

I use an Excel spreadsheet to produce the graphs, and I also keep rolling averages for 5, 30 and 100 days. Just helps me see where I am. A 30 day rolling average can indicate a fairly clear ceiling I think.

http://sallyjustme.blogspot.co.uk/2014/09/fitbit.html

 

[Min]

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).

The actimeters were dropped from the PACE trial on the advice of the participating charity Action for ME.

 

[Esther12]

The actimeters were dropped from the PACE trial on the advice of the participating charity Action for ME.

We don't know exactly what happened there, and they've refused to release the minutes. It would be interesting to see the details.

 

[Sean]

The actimeters were dropped from the PACE trial

They collected baseline data, but then dropped them for outcome data, which is even more disturbing.

The excuse they used, that it was too much of a burden on patients, is utter rubbish. Actometers weigh about 30 grams (1 ounce), and are designed to be unobtrusive. They are as much of a burden as wearing a digital watch or a t-shirt. That is, none at all.

They are not perfect measures, but they are a lot more objective and relevant than subjective self-report, and there was no excuse for PACE to have not used them at outcome.

 

[daisybell]

I wonder how many of us could provide a month of data, and whether even that amount from 10-15 people might indicate some patterns?
My feeling is that, although there would be considerable differences in overall activity depending on the extent of our illness, there would be a commonality of lack of intense activity, and also a different pattern of activity and rest to 'normal' folk....

 

[lansbergen]

My feeling is that, although there would be considerable differences in overall activity depending on the extent of our illness, there would be a commonality of lack of intense activity, and also a different pattern of activity and rest to 'normal' folk....

In the first years of my disease there was not a lack of intense activity but there was a different pattern. Between flares I did far to much and during flares I had to rest a lot. The psychs had an expression for that activity pattern but I do not remember what it was.

 

[deleder2k]

@Sasha, all I know is that i used a band called Sensewear for a week in the Norwegian Rituximab study before infusions started. I was told to live like I always do. Had to take it off in the shower.
I am scheduled to wear it again in 10 months. Hopefully then without autoantibodies and b-cells.

 

[Sasha]

@Sasha, all I know is that i used a band called Sensewear for a week in the Norwegian Rituximab study before infusions started. I was told to live like I always do. Had to take it off in the shower.
I am scheduled to wear it again in 10 months. Hopefully then without autoantibodies and b-cells.

Did they give you it to keep until then?

Just wondering if there would be value in patients wearing these continuously during the trial, @Jonathan Edwards? Would you find that acceptable if you were asked to do it in terms of convenience, @deleder2k

 

[deleder2k]

I wouldn't mind. But it would have to be recharged then. The Sensewear band could last for 10 days without recharging it. I don't think you'll find any that would last for months.

I used it for one week and sent it back to Haukeland University Hospital. They'll send it back to me in October 2015.

 

[Valentijn]

I wrote a bit about its use on my blog, and there is also a scatter graph there of every daily reading I've taken.... It shows both how my capacity to do stuff has dropped, but also my improved day to day consistency.

Cool ... you can see where the slightly higher peaks are causing big troughs afterwards

 

[Valentijn]

In the first years of my disease there was not a lack of intense activity but there was a different pattern. Between flares I did far to much and during flares I had to rest a lot. The psychs had an expression for that activity pattern but I do not remember what it was.

"Push and crash" for the Brits, but I think the Dutch psychobabblers would call you "relatively active" if you're doing too much and crashing. Once you start pacing, you become "passive"

 

[lansbergen]

"Push and crash" for the Brits, but I think the Dutch psychobabblers would call you "relatively active" if you're doing too much and crashing. Once you start pacing, you become "passive"

Thanks

 

[Jonathan Edwards]

Did they give you it to keep until then?

Just wondering if there would be value in patients wearing these continuously during the trial, @Jonathan Edwards? Would you find that acceptable if you were asked to do it in terms of convenience, @deleder2k

Hmmm... The more one looks into this the more complicated it gets. I do think it might be useful to do the sort of continuous assessment that Keela Too has on the blog. It may not be measuring exactly what one wants to measure but I can see it being part of a useful assessment method.

 

[Sasha]

Hmmm... The more one looks into this the more complicated it gets. I do think it might be useful to do the sort of continuous assessment that Keela Too has on the blog. It may not be measuring exactly what one wants to measure but I can see it being part of a useful assessment method.

The more I think about this, the weirder it seems that it has never been done. Patients are aware of the push-crash issue, even on an hour-to-hour basis - I think it's a fundamental part of life with ME and that it should be being observed. You wouldn't see this in most other diseases, I think - perhaps it could even be part of a diagnostic tool (or maybe not - just thinking aloud).

But I think that most people who aren't familiar with ME would be shocked by the constant low level of physical activity that many of us are forced to live with. And I think it would be informative in interpreting the results of trials (in particular the actimeter results of trials).

I'm wondering if you can be more specific about the potential benefits and complications that you see, @Jonathan Edwards?