Skip to main content

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)