Background
Methods
Study cohort - newly referred patients
Patient-level data - newly referred patients
Study cohort - former patients
Patient-level data - former patients
Statistical analysis
Results
One-year follow-up of newly referred patients
Service | Median (IQR) total number of sessions | Median (IQR) total session time (hours) | Median (IQR) total individual face-to-face session time (hours)a
| Median (IQR) total group session time (hours)a
| |
---|---|---|---|---|---|
A | Treatment data available, N = 126 | 4 (2–8), mean 5.6 | 6 (3–13), mean 8.2 | 2 (1–4), mean 3.1 | 4 (4–12), mean 8.0 |
With follow-up data (64/126 (50.8%)) | 5 (2–8), mean 5.4 | 6 (4–13), mean 7.9 | 2 (1–4), mean 3.1 | 4 (4–12), mean 7.8 | |
Discharged before follow-up (41/64 (64.1%)) | 3 (1–5), mean 3.7 | 5 (1–9), mean 5.8 | 1 (1–2), mean 2.0 | 4 (4–12), mean 7.2 | |
B | Treatment data available, N = 55 | 6 (2–10), mean 7.1 | 6 (2–13), mean 9.5 | 6 (4–7), mean 6.2 | 18 (7–24), mean 16.8 |
With follow-up data (23/55 (41.8%)) | 7 (3–12), mean 8.2 | 7 (3–15), mean 10.7 | 7 (5–8), mean 7.2 | 18 (18–28), mean 19.7 | |
Discharged before follow-up (5/23 (21.7%)) | 5 (4–5), mean 5.0 | 5 (4–5), mean 5.0 | 5 (4–5), mean 5.0 | - | |
C | Treatment data available, N = 22b
| 11 (9–12), mean 10.0 | 19 (17–21), mean 18.4 | 1 (1–2), mean 1.7 | 18 (16–20), mean 16.8 |
Discharged before follow-up (7/22 (31.8%)) | 9 (7–11), mean 9.0 | 17 (13–21), mean 17.0 | 1 (1–1), mean 1.8 | 16 (10–20), mean 15.1 | |
D | Treatment data available, N = 42 | 5 (2–8), mean 5.1 | 4 (3–6), mean 4.7 | 3 (2–6), mean 4.2 | - |
With follow-up data (25/42 (59.5%)) | 7 (4–8), mean 6.3 | 6 (4–7), mean 5.7 | 5 (3–7), mean 5.1 | - | |
Discharged before follow-up (13/25 (52.0%)) | 7 (3–8), mean 6.2 | 5 (4–7), mean 5.6 | 4 (3–6), mean 4.8 | - | |
E | Treatment data available, N = 133 | 6 (4–7), mean 5.6 | 6 (4–7), mean 5.9 | 6 (3–7), mean 5.4 | 11 (6–12), mean 9.7 |
With follow-up data (83/133 (62.4%)) | 6 (4–7), mean 5.9 | 6 (4–7), mean 6.1 | 6 (4–7), mean 5.8 | 11 (11–11), mean 11.1 | |
Discharged before follow-up (26/83 (31.3%)) | 7 (4–7), mean 5.8 | 7 (4–8), mean 6.2 | 6 (3–7), mean 5.5 | 11 (11–14), mean 11.5 | |
F | Treatment data available, N = 78 | 13 (9–14), mean 11.7 | 15 (10–18), mean 13.9 | 6 (5–11), mean 7.4 | 6 (1–13), mean 6.6 |
With follow-up data (58/78 (74.4%)) | 13 (11–15), mean 12.7 | 17 (13–18), mean 15.2 | 7 (5–12), mean 8.3 | 8 (1–13), mean 7.2 | |
Discharged before follow-up (27/58 (46.6%)) | 12 (6–13), mean 10.3 | 16 (7–18), mean 12.9 | 5 (5–9), mean 5.8 | 10 (1–13), mean 7.7 | |
G | Treatment data available, N = 25 | 12 (8–21), mean 13.0 | 12 (7–22), mean 13.8 | 12 (7–17), mean 13.2 | 8 (1–15), mean 7.5 |
With follow-up data (7/25 (28.0%)) | 11 (8–25), mean 14.4 | 10 (8–31), mean 16.3 | 10 (8–17), mean 14.2 | 15 (n = 1) | |
Discharged before follow-up (4/7 (57.1%)) | 11 (8–18), mean 12.8 | 10 (7–21), mean 14.0 | 10 (7–13), mean 10.4 | 15 (n = 1) | |
H | Treatment data available, N = 133 | 5 (1–9), mean 5.7 | No data | No data | No data |
With follow-up data (60/133 (45.1%)) | 6 (2–11), mean 6.8 | No data | No data | No data | |
Discharged before follow-up (19/60 (31.7%)) | 6 (5–9), mean 7.0 | No data | No data | No data | |
I | Treatment data available, N = 50 | 7 (2–10), mean 6.3 | 9 (3–15), mean 9.1 | 1 (0.3–6), mean 3.0 | 14 (8–16), mean 12.2 |
With follow-up data (26/50 (52.0%)) | 9 (5–11), mean 7.9 | 13 (7–16), mean 11.8 | 0.3 (0.3–4), mean 2.6 | 14 (10–17), mean 13.6 | |
Discharged before follow-up (4/26 (15.4%)) | 5 (1–7), mean 4.0 | 5 (1–7), mean 4.0 | 7 (2–7), mean 5.3 | - | |
J | Treatment data available, N = 47#
| 5 (3–11), mean 6.4 | 4 (3–14), mean 8.7 | 2 (2–3), mean 2.8 | 2 (2–2), mean 7.0 |
Discharged before follow-up (23/47 (31.8%)) | 3 (2–4), mean 3.2 | 3 (2–4), mean 2.9 | 2 (1–3), mean 1.9 | 2 (2–2), mean 1.4 | |
K | Treatment data available, N = 31 | 12 (10–13), mean 11.8 | 20 (16–23), mean 18.2 | 3 (2–5), mean 3.8 | 18 (14–20), mean 17.0 |
With follow-up data (20/31 (64.5%)) | 12 (10–15), mean 12.9 | 20 (17–24), mean 19.1 | 3 (2–6), mean 3.7 | 17 (16–20), mean 17.1 | |
Discharged before follow-up (9/20 (45.0%)) | 12 (9–13), mean 10.4 | 18 (17–23), mean 17.7 | 2 (2–3), mean 2.5 | 16 (15–21), mean 17.2 |
A (n = 64) | B (n = 22) | C (n = 23) | D (n = 25) | E (n = 83) | F (n = 58) | H (n = 60) | I (n = 26) | J (n = 51) | K (n = 20) | |
---|---|---|---|---|---|---|---|---|---|---|
Chalder Fatigue Scale (range 0–33) | −5.92 (−7.38, −4.46) | −3.18 (−6.02, −0.34) | −5.22 (−9.07, −1.36) | −5.24 (−8.53, −1.95) | −5.89 (−7.57, −4.21) | −7.41 (−9.62, −5.21) | −8.78 (−10.8, −6.73) | −3.27 (−6.21, −0.32) | −3.75 (−5.59, −1.90) | −9.50 (−13.7, −5.63) |
SF36 Physical Function Subscale (range 0–100) | 0.80 (−4.94, 6.53) | 4.26 (−3.63, 12.1) | 5.00 (−3.93, 13.9) | 9.40 (2.72, 16.1) | 3.48 (−1.37, 8.32) | 5.02 (−1.86, 11.9) | 6.45 (0.18, 12.7) | 2.12 (−3.82, 8.05) | 1.86 (−2.69, 6.41) | 10.0 (2.21, 17.8) |
Work & Social Adjustment Scale (range 0–40) | −2.37 (−4.20, −0.54) | −3.00 (−6.17, 0.17) | −2.23 (−6.68, 2.23) | −5.10 (−8.53, −1.67) | −3.47 (−4.99, −1.94) | −5.07 (−7.35, −2.79) | −4.24 (−6.58, −1.90) | −1.69 (−4.19, 0.81) | −1.66 (−3.53, 0.21) | −5.30 (−7.85, 2.75) |
Visual analogue pain rating scale (range 0–100) | 0.42 (−6.82, 7.67) | 0.13 (−8.54, 8.80) | −3.38 (−15.5, 8.71) | −9.48 (−23.0, 4.00) | −2.95 (−9.31, 3.40) | −1.60 (−10.2, 7.01) | −12.7 (−19.0, −6.36) | −7.16 (−14.5, 0.23) | −3.38 (−9.27, 2.52) | −8.29 (−19.8, 3.24) |
HADS Anxiety Score (range 0–21) | 0.39 (−0.83, 1.61) | 0.78 (−0.18, 1.74) | −1.23 (−3.25, 0.80) | −0.42 (−2.16, 1.33) | −0.69 (−1.44, 0.06) | −1.98 (−3.01, −0.95) | −1.53 (−2.54, −0.52) | −0.35 (−1.67, 0.98) | 0.61 (−0.32, 1.53) | −0.18 (−1.92, 1.56) |
HADS Depression Score (range 0–21) | −0.72 (−1.78, 0.34) | −0.48 (−1.73, 0.77) | −1.41 (−3.35, 0.53) | −0.92 (−2.44, 0.60) | −1.80 (−2.48, −1.12) | −2.31 (−3.34, −1.28) | −2.67 (−3.55, −1.78) | 0.58 (−0.76, 1.91) | 0.04 (−0.81, 0.88) | −2.24 (−3.78, −0.69) |
Epworth Sleepiness Scale (range 0–24) | −1.28 (−2.72, 0.15) | −0.65 (−2.19, 0.89) | −1.38 (−3.20, 0.44) | −0.67 (−2.58, 1.25) | −1.15 (−2.07, −0.22) | −1.69 (−2.96, −0.41) | −1.41 (−2.59, −0.23) | 0.96 (−0.88, 2.80) | −0.65 (−1.46, 0.16) | −1.59 (−3.63, 0.45) |
Jenkins Sleep Jenkins (range 0–20) | −1.32 (−2.64, −0.00) | −2.26 (−4.06, −0.47) | −1.76 (−3.85, 0.33) | −2.15 (−3.74, −0.56) | −0.86 (−1.77, 0.04) | −1.64 (−3.01, −0.27) | −1.97 (−3.36, −0.57) | −1.04 (−2.62, 0.54) | −0.69 (−1.77, 0.39) | −0.82 (−3.43, 1.78) |
CIS20R Fatigue Subscale (range 8–56) | −5.67 (−7.89, −3.55) | −3.58 (−7.34, 0.18) | −8.35 (−12.9, −3.78) | −2.95 (−6.97, 1.07) | −3.29 (−5.00, −1.58) | −5.85 (−8.49, −3.22) | −7.25 (−10.1, −4.38) | −3.35 (−5.25, −1.44) | −2.02 (−3.61, −0.43) | −4.94 (−8.85, −1.03) |
CIS20R Concentration Subscale (range 5–35) | −1.81 (−3.55, −0.07) | −2.68 (−5.72, 0.35) | −4.25 (−7.73, −0.77) | −2.90 (−5.43, −0.37) | −1.54 (−2.98, −0.11) | −3.82 (−5.66, −1.98) | −4.52 (−6.55, −2.48) | −2.54 (−4.82, −0.25) | −1.63 (−3.07, −0.18) | −1.94 (−5.03, 1.15) |
CIS20R Motivation Subscale (range 4–28) | −2.21 (−3.71, −0.72) | −2.37 (−4.48, −0.26) | −1.90 (−4.36, 0.56) | −1.80 (−4.23, 0.63) | −1.75 (−2.90, −0.60) | −3.27 (−4.64, −1.91) | −4.29 (−5.98, −2.59) | −0.58 (−2.18, 1.03) | −1.63 (−3.12, −0.13) | −3.65 (−6.03, −1.26) |
CIS20R Activity Subscale (range 3–21) | −2.23 (−3.70, −0.77) | −1.74 (−4.35, 0.87) | −1.30 (−3.19, 0.59) | −0.80 (−3.53, 1.93) | −1.63 (−2.85, −0.42) | −3.05 (−4.60, −1.51) | −3.29 (−4.81, −1.77) | −1.08 (−3.02, 0.87) | −0.96 (−2.17, 0.25) | −1.29 (−4.37, 1.79) |
A | B | C | D | E | F | H | I | J | K | Overall | ||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Paid work (employed/self-employed) since attending CFS/ME service | There has been no change in my employment situation | 58.7% (27/46) | 34.8% (8/23) | 42.9% (9/21) | 37.5% (9/24) | 40.0% (30/75) | 45.1% (23/51) | 37.0% (20/54) | 53.9% (14/26) | 60.8% (31/51) | 70.6% (12/17) | 47.2% (186/394) |
I have been able to return to work or increase my hours | 13.0% (6/46) | 26.1% (6/23) | 19.1% (4/21) | 16.7% (4/24) | 14.7% (11/75) | 19.6% (10/51) | 29.6% (16/54) | 15.4% (4/26) | 11.8% (6/51) | 11.8% (2/17) | 18.0% (71/394) | |
I have stopped working or reduced my hours because of CFS/ME | 23.9% (11/46) | 39.1% (9/23) | 23.8% (5/21) | 33.3% (8/24) | 36.0% (27/75) | 31.4% (16/51) | 31.5% (17/54) | 26.9% (7/26) | 27.5% (14/51) | 17.7% (3/17) | 30.0% (118/394) | |
I have stopped working or reduced my hours for other reasons | 4.4% (2/46) | 0.0% (0/23) | 14.3% (3/21) | 12.5% (3/24) | 9.3% (7/75) | 3.9% (2/51) | 1.9% (1/54) | 3.9% (1/26) | 0.0% (0/51) | 0.0% (0/17) | 4.8% (19/394) | |
Education or training since attending CFS/ME service | There has been no change in my college/university attendance | 90.3% (28/31) | 100.0% (9/9) | 73.7% (14/19) | 66.7% (10/15) | 70.7% (29/41) | 73.0% (27/37) | 74.1% (20/27) | 85.7% (12/14) | 93.6% (29/31) | 80.0% (8/10) | 78.8% (189/240) |
I have been able to return to education/training or increase my hours | 6.5% (2/31) | 0.0% (0/9) | 5.3% (1/19) | 6.7% (1/15) | 0.0% (0/41) | 10.8% (4/37) | 3.7% (1/27) | 0.0% (0/14) | 0.0% (0/31) | 0.0% (0/10) | 4.6% (11/240) | |
I have stopped attending or reduced my hours because of CFS/ME | 3.2% (1/31) | 0.0% (0/9) | 10.5% (2/19) | 20.0% (3/15) | 24.4% (10/41) | 13.5% (5/37) | 14.8% (4/27) | 14.3% (2/14) | 3.2% (1/31) | 20.0% (2/10) | 12.9% (31/240) | |
I have stopped attending or reduced my hours for other reasons | 0.0% (0/31) | 0.0% (0/9) | 10.5% (2/19) | 6.7% (1/15) | 4.9% (2/41) | 2.7% (1/37) | 7.4% (2/27) | 0.0% (0/14) | 3.2% (1/31) | 0.0% (0/10) | 3.8% (9/240) | |
Unpaid work and domestic tasks (childcare, housework, voluntary work, driving, cooking, cleaning, etc.) since attending CFS/ME service | My ability to do unpaid work and domestic tasks has not changed | 25.6% (11/43) | 30.0% (6/20) | 36.4% (8/22) | 30.4% (7/23) | 27.7% (18/65) | 30.6% (15/49) | 34.6% (18/52) | 30.8% (8/26) | 28.0% (14/50) | 25.0% (4/16) | 29.3% (109/372) |
I have been able to do more unpaid work and domestic tasks | 48.8% (21/43) | 30.0% (6/20) | 27.3% (6/22) | 26.1% (6/23) | 24.6% (16/65) | 38.8% (19/49) | 38.5% (20/52) | 26.9% (7/26) | 34.0% (17/50) | 43.8% (7/16) | 34.7% (129/372) | |
I do less unpaid work and/or fewer tasks because of CFS/ME | 23.3% (10/43) | 40.0% (8/20) | 31.8% (7/22) | 44.6% (29/23) | 44.6% (29/65) | 26.5% (13/49) | 26.9% (14/52) | 42.3% (11/26) | 38.0% (38/50) | 25.0% (4/16) | 34.1% (127/372) | |
I do less unpaid work and/or fewer tasks for other reasons | 2.3% (1/43) | 0.0% (0/20) | 4.6% (1/22) | 0.0% (0/23) | 3.1% (2/65) | 4.1% (2/49) | 0.0% (0/52) | 0.0% (0/26) | 0.0% (0/50) | 6.3% (1/16) | 1.9% (7/372) | |
Social and leisure activities (going out, inviting people over, hobbies, gardening, travel, exercise, etc.) since attending CFS/ME service | My ability to do social & leisure activities has not changed | 21.3% (10/47) | 21.7% (5/23) | 27.3% (6/22) | 40.0% (8/20) | 21.9% (16/73) | 35.2% (19/54) | 25.4% (15/59) | 23.1% (6/26) | 25.5% (13/51) | 18.8% (3/16) | 25.7% (102/397) |
I have been able to do more social & leisure activities | 46.8% (22/47) | 43.5% (10/23) | 27.3% (6/22) | 20.0% (4/20) | 28.8% (21/73) | 35.2% (19/54) | 40.7% (24/59) | 30.8% (8/26) | 29.4% (15/51) | 43.8% (7/16) | 35.0% (139/397) | |
I do fewer social & leisure activities because of CFS/ME | 29.8% (14/47) | 34.8% (8/23) | 27.3% (6/22) | 40.0% (8/20) | 45.2% (33/73) | 27.8% (15/54) | 28.8% (17/59) | 46.2% (12/26) | 45.1% (23/51) | 31.3% (5/16) | 36.0% (143/397) | |
I do fewer social & leisure activities for other reasons | 2.1% (1/47) | 0.0% (0/23) | 18.2% (4/22) | 0.0% (0/20) | 4.1% (3/73) | 1.9% (1/54) | 5.1% (3/59) | 0.0% (0/26) | 0.0% (0/51) | 6.3% (1/16) | 3.3% (13/397) |
A | B | C | D | E | F | H | I | J | K | Overall | ||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Overall, how much do you feel your health has changed since you first came to the CFS/ME service? | Much better or very much better | 26.6% (17/64) | 30.4% (7/23) | 31.8% (7/22) | 21.7% (5/23) | 18.5% (15/81) | 40.4% (23/57) | 38.2% (21/55) | 23.1% (6/26) | 20.8% (10/48) | 21.1% (4/19) | 27.5% (115/418) |
A little better, no change or a little worse | 64.1% (41/64) | 65.2% (15/23) | 45.5% (10/22) | 65.2% (15/23) | 76.5% (62/81) | 54.4% (31/57) | 56.4% (31/55) | 61.5% (16/26) | 75.0% (36/48) | 68.4% (13/19) | 64.6% (270/418) | |
Much worse or very much worse | 9.4% (6/64) | 4.4% (1/23) | 22.7% (5/22) | 13.0% (3/23) | 4.9% (4/81) | 5.3% (3/57) | 5.5% (3/55) | 15.4% (4/26) | 4.2% (2/48) | 10.5% (2/19) | 7.9% (33/418) | |
Overall, how much do you feel your CFS/ME has changed since you first came to the CFS/ME service? | Much better or very much better | 23.8% (15/63) | 30.4% (7/23) | 31.8% (7/22) | 20.0% (4/20) | 21.2% (14/66) | 35.1% (20/57) | 34.6% (19/55) | 23.1% (6/26) | 12.8% (6/47) | 33.3% (6/18) | 26.2% (104/397) |
A little better, no change or a little worse | 71.4% (45/63) | 60.9% (14/23) | 59.1% (13/22) | 65.0% (13/20) | 72.7% (48/66) | 56.1% (32/57) | 61.8% (34/55) | 69.2% (18/26) | 76.6% (36/47) | 61.1% (11/18) | 66.5% (264/397) | |
Much worse or very much worse | 4.8% (3/63) | 8.7% (2/23) | 9.1% (2/22) | 15.0% (3/20) | 6.1% (4/66) | 8.8% (5/57) | 3.6% (2/55) | 7.7% (2/26) | 10.6% (5/47) | 5.6% (1/18) | 7.3% (29/397) | |
Do you think that you are still suffering from CFS/ME? | Yes | 78.7% (37/47) | 81.8% (18/22) | 81.0% (17/21) | 85.0% (17/20) | 90.4% (66/73) | 87.3% (48/55) | 86.4% (51/59) | 92.3% (24/26) | 92.2% (47/51) | 94.1% (16/17) | 87.2% (341/391) |
No | 4.3% (2/47) | 4.6% (1/22) | 0.0% (0/21) | 10.0% (2/20) | 2.7% (2/73) | 1.8% (1/55) | 0.0% (0/59) | 3.9% (1/26) | 3.9% (2/51) | 0.0% (0/17) | 2.8% (11/391) | |
Uncertain | 17.0% (8/47) | 13.6% (3/22) | 19.1% (4/21) | 5.0% (1/20) | 6.9% (5/73) | 10.9% (6/55) | 13.6% (8/59) | 3.9% (1/26) | 3.9% (2/51) | 5.9% (1/17) | 10.0% (39/391) |
Long-term (2- to 5-year) follow-up of former patients
Baseline | 1 year | 2 years | 3 years | 4 years | 5 years | ||
---|---|---|---|---|---|---|---|
Chalder Fatigue Scale (range 0–33) | All former patients in sample | 28 (24–31), n = 1265 | 21 (13–26), n = 516 | 20 (15–27), n = 80 | 21 (15–26), n = 83 | 20 (16–26), n = 106 | 21 (14–28), n = 99 |
Patients who reported very much or much better overall health at 2, 3, 4, or 5 years | 27 (23–40), n = 117 | 16 (11–22), n = 69 | 15.5 (11–20), n = 20 | 14 (8–19), n = 22 | 16 (11–19), n = 41 | 11 (11–17), n = 31 | |
Patients who reported little or no change in overall health at 2, 3, 4, or 5 years | 27.5 (23–30), n = 202 | 22 (16–26), n = 124 | 20.5 (15.5–27), n = 52 | 22 (18–26), n = 47 | 21 (17–24), n = 47 | 21 (19–27), n = 43 | |
Patients who reported very much or much worse overall health at 2, 3, 4, or 5 years | 27 (33–66), n = 30 | 24.5 (19–32), n = 42 | 30 (24–32), n = 8 | 33 (26–33), n = 14 | 30.5 (26–33), n = 18 | 31 (25–33), n = 25 | |
SF36 Physical Function Subscale (range 0–100) | All former patients in sample | 47 (27–67), n = 1265 | 52 (32–77), n = 516 | 52 (29.5–74.5), n = 80 | 52 (27–77), n = 83 | 57 (32–82), n = 106 | 52 (32–82), n = 99 |
Patients who reported very much or much better overall health at 2, 3, 4, or 5 years | 52 (37–67), n = 117 | 72 (52–82), n = 69 | 77 (49.5–97), n = 20 | 87 (67–97), n = 22 | 82 (62–87), n = 41 | 87 (72–97), n = 31 | |
Patients who reported little or no change in overall health at 2, 3, 4, or 5 years | 47 (32–62), n = 202 | 49.5 (32–72), n = 124 | 52 (29.5–72), n = 52 | 47 (27–67), n = 47 | 52 (27–67), n = 47 | 52 (32–72), n = 43 | |
Patients who reported very much or much worse overall health at 2, 3, 4, or 5 years | 29.5 (17–52), n = 66 | 24.5 (12–52), n = 42 | 24.5 (7–34.5), n = 8 | 17 (2–37), n = 14 | 22 (7–47), n = 18 | 22 (2–37), n = 25 |
2 years | 3 years | 4 years | 5 years | Overall | ||
---|---|---|---|---|---|---|
Paid work (employed/self-employed) since attending CFS/ME service | There has been no change in my employment situation | 51.3% (39/76) | 45.0% (36/80) | 41.8% (43/103) | 26.8% (26/97) | 41.4% (154/372) |
I have been able to return to work or increase my hours | 18.4% (14/76) | 17.5% (14/80) | 28.2% (29/103) | 30.9% (30/97) | 23.7% (88/372) | |
I have stopped working or reduced my hours because of CFS/ME | 26.3% (20/76) | 28.8% (23/80) | 22.3% (23/103) | 32.0% (31/97) | 27.4% (102/372) | |
I have stopped working or reduced my hours for other reasons | 4.0% (3/76) | 8.8% (7/80) | 7.8% (8/103) | 10.3% (10/97) | 7.5% (28/372) | |
Education or training since attending CFS/ME service | There has been no change in my college/university attendance | 57.8% (26/45) | 69.0% (40/58) | 69.2% (45/65) | 74.1% (43/58) | 67.7% (161/238) |
I have been able to return to education/training or increase my hours | 11.1% (5/45) | 10.3% (6/58) | 15.4% (10/65) | 10.3% (6/58) | 12.2% (29/238) | |
I have stopped attending or reduced my hours because of CFS/ME | 17.8% (8/45) | 17.2% (10/58) | 7.7% (5/65) | 8.6% (5/58) | 12.6% (30/238) | |
I have stopped attending or reduced my hours for other reasons | 13.3% (6/45) | 3.5% (2/58) | 7.7% (5/65) | 6.9% (4/58) | 7.6% (18/238) | |
Unpaid work and domestic tasks (childcare, housework, voluntary work, driving, cooking, cleaning, etc.) since attending CFS/ME service | My ability to do unpaid work and domestic tasks has not changed | 26.3% (20/76) | 31.3% (25/80) | 24.8% (25/101) | 30.1% (28/93) | 29.3% (107/365) |
I have been able to do more unpaid work and domestic tasks | 29.0% (22/76) | 33.8% (27/80) | 42.6% (43/101) | 38.7% (36/93) | 36.2% (132/365) | |
I do less unpaid work and/or fewer tasks because of CFS/ME | 39.5% (30/76) | 35.0% (28/80) | 30.7% (31/101) | 28.0% (26/93) | 32.1% (117/365) | |
I do less unpaid work and/or fewer tasks for other reasons | 5.3% (4/76) | 0.0% (0/80) | 2.0% (2/101) | 3.2% (3/93) | 2.5% (9/365) | |
Social and leisure activities (going out, inviting people over, hobbies, gardening, travel, exercise, etc.) since attending CFS/ME service | My ability to do social & leisure activities has not changed | 25.0% (20/80) | 34.6% (28/81) | 14.2% (15/106) | 22.5% (22/98) | 23.0% (88/382) |
I have been able to do more social & leisure activities | 28.8% (23/80) | 32.1% (26/81) | 37.7% (40/106) | 37.8% (37/98) | 34.8% (133/382) | |
I do fewer social & leisure activities because of CFS/ME | 43.8% (35/80) | 32.1% (26/81) | 43.4% (46/106) | 35.7% (35/98) | 39.0% (149/382) | |
I do fewer social & leisure activities for other reasons | 2.5% (2/80) | 1.2% (1/81) | 4.7% (5/106) | 4.1% (4/98) | 3.1% (12/382) | |
Overall, how much do you feel your health has changed since you first came to the CFS/ME service? | Much better or very much better | 25.0% (20/80) | 26.5% (22/83) | 38.7% (41/106) | 31.3% (31/99) | 30.4% (117/385) |
A little better, no change or a little worse | 65.0% (52/80) | 56.6% (47/83) | 44.3% (47/106) | 43.4% (43/99) | 52.5% (202/385) | |
Much worse or very much worse | 10.0% (8/80) | 16.9% (14/83) | 17.0% (18/106) | 25.3% (25/99) | 17.1% (66/385) | |
Overall, how much do you feel your CFS/ME has changed since you first came to the CFS/ME service? | Much better or very much better | 18.8% (15/80) | 28.9% (24/83) | 41.0% (43/105) | 35.1% (34/97) | 31.4% (120/382) |
A little better, no change or a little worse | 73.8% (59/80) | 57.8% (48/83) | 41.0% (43/105) | 43.3% (42/97) | 53.1% (203/382) | |
Much worse or very much worse | 7.5% (6/80) | 13.3% (11/83) | 18.1% (19/105) | 21.7% (21/97) | 15.5% (59/382) | |
Do you think that you are still suffering from CFS/ME? | Yes | 86.3% (69/80) | 90.4% (75/83) | 82.1% (87/106) | 82.7% (81/98) | 85.4% (327/383) |
No | 5.0% (4/80) | 2.4% (2/83) | 6.6% (7/106) | 8.2% (8/98) | 5.7% (22/383) | |
Uncertain | 8.8% (7/80) | 7.2% (6/83) | 11.3% (12/106) | 9.2% (9/98) | 8.9% (34/383) |