Table 4 Severity distribution among disease register participants and non-participants
From: A Disease Register for ME/CFS: Report of a Pilot Study
| Â | Participants (n = 158) | Non-Participants (n = 58) | 95% confidence interval (difference in percentages) | ||
|---|---|---|---|---|---|
| Â | No. | % total | No. | % total | Â |
How often do you have tiredness/fatigue? | Â | Â | Â | Â | Â |
   Occasionally | 1 | 0.6 | 0 | 0.0 | -0.6 - 1.9 |
   < 3 times/week | 6 | 3.8 | 2 | 3.4 | -5.3 - 6.0 |
   Every day or nearly every day | 151 | 95.6 | 56 | 96.6 | -6.8 - 4.8 |
Were your activities (personal, social, professional, at home) affected by the symptoms of tiredness/fatigue? | Â | Â | Â | Â | Â |
   Not at all | 0 | 0.0 | 0 | 0.0 | 0.0 - 0.0 |
   A little | 1 | 0.6 | 0 | 0.0 | -0.6 - 1.9 |
   Needed to reduce | 35 | 22.2 | 13 | 22.4 | -13.1 - 12.5 |
   Can no longer do | 122 | 77.2 | 45 | 77.6 | -13.2 - 12.5 |
Would you say that your activities were reduced to < 50% than before you fell ill? | Â | Â | Â | Â | Â |
   Yes, by > 50% | 144 | 91.1 | 48 | 82.8 | -2.5 - 19.3 |
   No, by 50% or less or not at all | 11 | 7.0 | 5 | 8.6 | -10.1 - 6.8 |
   Don't know | 3 | 1.9 | 5 | 8.6 | -14.4 - 1.0 |
Would you say that your fatigue is debilitating and affects your mental and physical functioning? | Â | Â | Â | Â | Â |
   Yes | 153 | 96.9 | 55 | 94.8 | -4.4 - 8.5 |
   No | 3 | 1.9 | 1 | 1.7 | -3.9 - 4.2 |
   Don't know | 2 | 1.3 | 1 | 1.7 | -4.3 - 3.4 |
Pain level (where 0 = no pain, and 10 = pain as bad as possible) | Â | Â | Â | Â | Â |
   Mean | 5.3 | 5.6 |  | ||
   95% confidence interval Standard deviation | 4.9 - 5.7 | 4.5 - 6.7 |  | ||
   Median | 2.5 | 2.1 |  | ||
| Â | 6 | 6 | Â | ||
Fatigue level on recruitment (where 0 = no problem, and 100 = the most severe health impediment) | Â | Â | Â | Â | Â |
   Mean | 66.0 | 66.8 |  | ||
   95% confidence interval | 63.0 - 69.0 | 55.6 - 78.0 |  | ||
   Standard deviation | 18.3 | 38.0 |  | ||
   Median | 60 < 70 | 60 < 70 |  | ||