More than 8,000 adults are assessed and treated by specialist NHS ‘CFS/ME’ clinical teams every year in the UK, but little is known about the outcomes for patients. Fortunately, a longitudinal cohort study has just been published, using data from six ‘CFS/ME’ specialist services between January 2005 and December 2009. In the 5 years, 1,643 patients had been seen, but follow-up data 12 months after the initial consultation was available only for 834 (51%).

Overall, there were significant improvements in fatigue (of 6.8 points on a 0–33 scale), physical function (4.4 points on a 0–100 scale), anxiety (0.6 points on a 0–21 scale) and pain (5.3 points on a 0–100 scale). Importantly, patients who were less physically able at the initial assessment had higher levels of fatigue, depression and pain at follow-up. Similarly, patients who were in more pain initially, had worse scores for all outcomes at follow-up.

The NHS specialist ‘CFS/ME’ services in England follow the 2007 NICE Guidelines in offering cognitive–behavioural or graded exercise therapy, along with activity and sleep management. These strategies are mainly intended to help patients better cope with their situation, not to cure the underlying disease, so it is perhaps not surprising that the outcomes seen in this study were relatively modest overall. Indeed, they appear to be less effective in this ‘real world’ setting than in formal clinical trials.

As the authors point out, while these NHS services are moderately effective in improving fatigue in patients with ME/CFS, they seem to be much less effective in improving physical function than similar treatments delivered in clinical trials, something that they say requires urgent investigation.

Reference: Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. Crawley E et al. QJM. 2013 Jun; 106(6): 555-65.