Table 6 Change in activities and health across CFS/ME specialist services at 2- to 5-year follow-up
From: Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England
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) |