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Table 4 Severity distribution among disease register participants and non-participants

From: A Disease Register for ME/CFS: Report of a Pilot Study

  Participants
(n = 158)
Non-Participants
(n = 58)
95% confidence interval
(difference in percentages)
  No. % total No. % total  
How often do you have tiredness/fatigue?      
   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?      
   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?      
   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?      
   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)      
   Mean 5.3 5.6  
   95% confidence interval Standard deviation 4.9 - 5.7 4.5 - 6.7  
   Median 2.5 2.1  
  6 6  
Fatigue level on recruitment (where 0 = no problem, and 100 = the most severe health impediment)      
   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