From QJM, An International Journal in Medicine, 28 March 2013. (Full text available).
Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database
E. Crawley(1), S.M. Collin(1), P.D. White(2), K. Rimes(3), J.A.C. Sterne(4), M.T. May(4), CFS/ME National Outcomes Database
1 Centre for Child & Adolescent Health, School of Social & Community Medicine, University of Bristol, Oakfield House, Oakfield Grove, Bristol BS8 2BN,
2 Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Charterhouse Square, London EC1M 6BQ,
3 Department of Psychology, University of Bath, Claverton Down, Bath BA2 7AY and
4 School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS, UK
Abstract
BACKGROUND
Chronic fatigue syndrome (CFS) is relatively common and disabling. Over 8000 patients attend adult services each year, yet little is known about the outcome of patients attending NHS services.
AIM
Investigate the outcome of patients with CFS and what factors predict outcome.
DESIGN
Longitudinal patient cohort.
METHODS
We used data from six CFS/ME (myalgic encephalomyelitis) specialist services to measure changes in fatigue (Chalder Fatigue Scale), physical function (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and pain (visual analogue pain rating scale) between clinical assessment and 8–20 months of follow-up. We used multivariable linear regression to investigate baseline factors associated with outcomes at follow-up.
RESULTS
Baseline data obtained at clinical assessment were available for 1643 patients, of whom 834 (51%) had complete follow-up data. There were improvements in fatigue [mean difference from assessment to outcome: −6.8; 95% confidence interval (CI) −7.4 to −6.2; P < 0.001]; physical function (4.4; 95% CI 3.0–5.8; P < 0.001), anxiety (−0.6; 95% CI −0.9 to −0.3; P < 0.001), depression (−1.6; 95% CI −1.9 to −1.4; P < 0.001) and pain (−5.3; 95% CI −7.0 to −3.6; P < 0.001). Worse fatigue, physical function and pain at clinical assessment predicted a worse outcome for fatigue at follow-up. Older age, increased pain and physical function at assessment were associated with poorer physical function at follow-up.CONCLUSIONSPatients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function. Outcomes were predicted by fatigue, disability and pain at assessment.
So; about half of the subjects were dropped, or got lost, or vanished for some unexplained reason.
Folk who are older or iller to start off with, have less chance of improvement.
Are the folk who did get an improvement simply following the course of the illness – the less ill you are and the younger you are, the better the chance of some recovery anyway.
And nobody knows what illness the subjects had in the first place.
Just another example of putting garbage in, messing around with it a little bit, and getting more garbage out.
Who paid for this?
Given that the specialist NHS CFS/ME services do nothing except to say “Yes, you have CFS, would you mind leaving our list so that we can put someone else on it?” (or at least that’s been my experience), then what those figures seem to be saying is that CBT and GET are roughly equal to no treatment at all.