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Table 2 DSQ-2 symptoms

From: Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort

 

Dutch database (n = 337)

US database (n = 252)

Composite score

Mean (SD)

Participants at 2/2 threshold (%)

Composite score

Mean (SD)

Participants at 2/2 threshold (%)

Fatigue/extreme tiredness

75.4 (17.5)

90.7

81.4 (15.1)

98.4

Post-exertional malaise

 Dead, heavy feeling after starting exercise

50.1 (26.9)

58.3

76.2 (24.7)

87.7

 Next-day soreness or fatigue after everyday activities

66.6 (20.8)

80.7

75.3 (21.6)

90.9

 Mentally tired after the slightest effort

61.7 (23.7)

72.8

68.2 (23.0)

86.1

 Physically tired after minimum exercise

67.0 (21.7)

81.2

77.8 (20.6)

92.9

 Physically drained or sick after mild activity

59.8 (22.8)

70.3

73.2 (22.5)

88.9

 Muscle fatigue after mild physical activity

63.1 (25.7)

74.4

72.2 (26.1)

86.1

 Worsening of symptoms after mild physical activity

67.7 (23.7)

78.5

78.8 (21.9)

92.9

 Worsening of symptoms after mild mental activity

59.1 (25.9)

66.5

63.4 (27.0)

76.6

 Difficulty reading (dyslexia) after mild physical or mental activity

41.2 (30.8)

40.6

44.6 (33.4)

49.2

Sleep

 Unrefreshing sleep

73.9 (22.3)

88.0

81.7 (19.1)

94.8

 Need to nap daily

56.2 (32.3)

56.4

58.1 (30.0)

66.7

 Problems falling asleep

47.4 (28.0)

49.9

55.9 (29.3)

63.9

 Problems staying asleep

52.7 (28.6)

56.4

58.4 (30.5)

65.1

 Waking up early in the morning (e.g. 3 AM)

43.2 (28.3)

43.1

48.9 (30.2)

49.6

 Sleeping all day and staying awake all night

18.4 (22.8)

9.5

17.7 (27.2)

16.3

 Daytime drowsiness

52.6 (26.9)

55.3

63.2 (26.9)

77.0

Pain

 Pain or aching in muscles

59.6 (24.8)

70.0

67.8 (26.0)

80.2

 Joint pain

51.1 (29.9)

59.4

57.2 (32.9)

64.7

 Eye pain

31.2 (24.6)

24.8

31.8 (28.8)

31.0

 Chest pain

23.1 (21.8)

11.7

25.8 (25.7)

19.0

 Bloating

38.2 (25.8)

37.6

47.1 (28.1)

50.4

 Abdomen/stomach pain

36.4 (23.2)

30.8

42.1 (27.7)

43.7

 Headaches

24.8 (23.8)

42.8

50.5 (26.3)

55.2

 Aching of the eyes or behind the eyes

29.0 (24.6)

17.4

36.8 (29.8)

36.9

 Sensitivity to pain

27.0 (30.0)

24.0

51.3 (32.9)

59.5

 Myofascial pain

15.7 (25.7)

12.5

26.3 (34.0)

30.2

Neurocognitive

 Muscle twitches

26.9 (22.3)

16.6

34.4 (25.5)

29.8

 Muscle weakness

44.7 (27.4)

45.2

63.5 (27.2)

74.6

 Sensitivity to noise

54.7 (26.8)

57.8

61.0 (26.8)

69.8

 Sensitivity to bright lights

47.3 (28.4)

46.0

53.2 (29.0)

55.6

 Problems remembering things

52.2 (22.5)

58.0

67.9 (24.1)

84.5

 Difficulty paying attention for a long period of time

60.8 (24.0)

73.3

70.4 (24.3)

86.1

 Difficulty finding the right word to say, or expressing thoughts

48.5 (22.4)

50.7

61.1 (24.7)

75.4

 Difficulty understanding things

33.3 (21.5)

23.2

48.5 (25.1)

55.2

 Only able to focus on one thing at a time

57.1 (25.2)

67.6

64.9 (25.1)

78.6

 Unable to focus vision

21.5 (23.6)

13.6

35.1 (27.4)

31.7

 Unable to focus attention

34.6 (22.9)

27.2

50.9 (25.1)

63.1

 Loss of depth perception

18.5 (25.6)

11.7

24.0 (29.5)

21.4

 Slowness of thought

47.3 (26.4)

50.7

56.9 (25.5)

71.4

 Absent-mindedness or forgetfulness

44.0 (22.6)

43.3

60.7 (24.5)

78.6

 Feeling disoriented

20.2 (22.7)

11.2

35.9 (25.3)

29.4

 Slowed speech

21.3 (22.7)

12.0

32.6 (27.1)

31.3

 Poor coordination

30.0 (25.1)

21.3

46.2 (28.6)

52.8

Autonomic

 Bladder problems

22.1 (28.0)

18.3

35.6 (32.5)

34.5

 Urinary urgency

34.5 (27.6)

31.3

39.7 (31.2)

42.9

 Waking up at night to urinate

51.2 (29.2)

49.6

45.7 (32.0)

46.4

 Irritable bowel problems

39.8 (29.7)

42.2

49.1 (32.7)

55.6

 Nausea

28.4 (21.5)

16.6

33.8 (26.9)

30.6

 Feeling unsteady on feet

34.2 (24.1)

23.7

44.0 (28.8)

46.4

 Shortness of breath or trouble catching breath

27.9 (22.2)

17.7

39.8 (28.0)

37.7

 Dizziness or fainting

31.3 (22.2)

19.6

42.1 (27.6)

43.7

 Irregular heart beats

27.8 (23.0)

16.1

30.4 (26.8)

28.6

 Heart beats quickly after standing

31.3 (28.9)

27.0

43.8 (32.6)

46.0

 Blurred or tunnel vision after standing

21.9 (26.4)

16.6

30.5 (31.2)

29.0

 Graying or blacking out after standing

32.5 (24.2)

23.2

22.7 (28.1)

17.5

 Inability to tolerate an upright position

27.3 (27.9)

18.3

46.7 (34.3)

52.0

Neuroendocrine

 Losing weight without trying

7.1 (16.7)

4.1

13.2 (21.9)

7.5

 Gaining weight without trying

18.3 (25.8)

13.9

36.3 (36.6)

41.3

 Lack of appetite

19.3 (21.4)

11.4

30.3 (25.8)

25.4

 Sweating hands

12.9 (21.2)

8.2

16.6 (25.7)

13.1

 Night sweats

33.0 (27.3)

29.2

36.1 (30.5)

31.3

 Cold limbs

51.9 (26.4)

58.3

46.9 (29.9)

48.4

 Feeling chills or shivers

31.7 (23.1)

21.5

34.0 (26.3)

32.9

 Feeling hot or cold for no reason

42.4 (24.8)

38.7

51.7 (26.9)

61.1

 Felling like you have a high temperature

29.6 (22.6)

19.3

33.0 (27.2)

29.4

 Feeling like you have a low temperature

20.7 (25.5)

15.8

24.7 (26.7)

21.8

 Alcohol intolerance

15.1 (30.8)

14.2

40.1 (36.9)

34.1

 Intolerance to extremes of temperature

42.3 (35.0)

41.7

64.9 (31.1)

72.2

 Fluctuations in temperature throughout the day

30.3 (28.5)

26.4

45.2 (31.8)

48.0

Immune

 Sore throat

30.1 (20.4)

17.4

37.3 (25.7)

32.9

 Tender/sore lymph nodes

23.4 (22.9)

14.4

37.5 (30.5)

36.5

 Fever

9.2 (16.9)

1.6

16.1 (22.1)

9.9

 Flu-like symptoms

36.1 (23.7)

28.3

51.8 (27.3)

57.1

 Sensitivity to smells, food, medications, or chemicals

25.6 (27.1)

19.1

45.0 (32.7)

46.8

 Viral infections with prolonged recovery periods

16.9 (24.7)

9.5

35.0 (32.7)

32.5

 Sinus infections

15.2 (24.0)

10.4

21.9 (26.2)

19.4

Others

 Sensitivity to mold

18.3 (28.9)

16.6

27.2 (36.3)

30.6

 Sensitivity to vibration

22.9 (29.9)

18.3

30.6 (35.0)

32.9