Sunday, December 20, 2009

Activity logs and CFS

Activity logs as a measure of daily activity among patients with
Chronic Fatigue Syndrome.

Authors: Jason, L.A., Timpo, P., Porter, N., Herrington, J., Brown,
M., Torres-Harding, S., & Friedberg, F. (2009).

Journal: Journal of Mental Health, 18, 549-556.

Background: Self-report data collected through interviews has been one
of the primary ways of assessing symptoms of patients with chronic
fatigue syndrome (CFS).  An alternative way to collect data involves
activity logs, which involves patients writing down the pattern,
intensity, and qualitative nature of activity over several days.

Aims:  We examined the associations between activity, evaluation of
activity and symptoms.

Methods: Activity log data over a two day period of time were used in
the present study using a sample of patients with diagnosed CFS.

Results: Findings indicated that the percent of time spent feeling
fatigued was positively associated with a higher percent of  time in
pain and doing activities that were fatiguing. However, time spent in
meaningful activities was associated with less fatigue.

Conclusions: These findings and others suggest that activity logs can
provide investigators and clinicians with valuable sources of data for
understanding patterns of behavior and activity among patients with CFS.
* * *
I found many of my doctors thought that I laid in bed 24 hours a day, while a staff of servants tended to my every need.  Explaining to them that I might only be out of bed an hour or two, but that entire time was spent being active (cooking, cleaning, etc.) and then I had to go back to bed because the activity tired me out made it clear that I was up-and-moving a lot more than they thought.
With one doctor, I told him that I walked around the house because I didn't want to risk falling down the front stairs, and he said that wasn't enough.  When I got home, I pulled out my calculator.  My house is long and narrow, with the bedroom/bathroom at one end and the living room/front door at the far end.  I measured the distance from the bedroom to the front door (once for the morning paper and once for the mail) and from the bedroom to the kitchen (at least 3 times a day), and at my next appointment quantified that even on days that I "spent the entire day in bed", I walked about a quarter mile -- if I was on the couch, that would double because I had to walk the length of the house to the bathroom. 
The amount of walking I did didn't change, just the doctor's perception of it.  A quarter mile was "a good start".  I assured him that on days that I felt better, I did twice that amount, and on days I felt really good, I'd walk the length of the house several times just for exercise.

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