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Multicenter Study
. 2017 Jul 14;17(1):488.
doi: 10.1186/s12913-017-2437-3.

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

Simon M Collin  1 , Esther Crawley  2
Affiliations
Multicenter Study

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

Simon M Collin et al. BMC Health Serv Res. .

Abstract

Background: NHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described.

Methods: We described treatments provided by 11 CFS/ME specialist services and we measured changes in patient-reported fatigue (Chalder, Checklist Individual Strength), function (SF-36 physical subscale, Work & Social Adjustment Scale), anxiety and depression (Hospital Anxiety & Depression Scale), pain (visual analogue rating), sleep (Epworth, Jenkins), and overall health (Clinical Global Impression) 1 year after the start of treatment, plus questions about impact of CFS/ME on employment, education/training and domestic tasks/unpaid work. A subset of these outcome measures was collected from former patients 2-5 years after assessment at 7 of the 11 specialist services.

Results: Baseline data at clinical assessment were available for 952 patients, of whom 440 (46.2%) provided 1-year follow-up data. Treatment data were available for 435/440 (98.9%) of these patients, of whom 175 (40.2%) had been discharged at time of follow-up. Therapy programmes varied substantially in mode of delivery (individual or group) and number of sessions. Overall change in health 1 year after first attending specialist services was 'very much' or 'much better' for 27.5% (115/418) of patients, 'a little better' for 36.6% (153/418), 'no change' for 15.8% (66/418), 'a little worse' for 12.2% (51/418), and 'worse' or 'very much worse' for 7.9% (33/418). Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded "Yes" to "Do you think that you are still suffering from CFS/ME?" 8.9% (34/383) were "Uncertain", and 5.7% (22/383) responded "No".

Conclusions: This multi-centre NHS study has shown that, although one third of patients reported substantial overall improvement in their health, CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.

Keywords: Chronic fatigue syndrome; ME; NHS England; Specialist care.

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Conflict of interest statement

Ethics approval and consent to participate

This study had NHS Research Ethics Committee approval (14/NW/0242), and all patients provided written informed consent.

Consent for publication

Not applicable.

Competing interests

EC is a medical advisor for the Sussex & Kent ME/CFS Society.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Flowchart showing recruitment, data availability and 1-year follow-up of adult patients across CFS/ME specialist services
Fig. 2
Fig. 2
Box chart showing total duration of all treatment sessions (individual face-to-face, individual telephone/internet or group) across CFS/ME specialist services
Fig. 3
Fig. 3
Changes (mean difference with 95% CI) in patient reported outcome measures between initial assessment and 1-year follow-up across CFS/ME specialist services
Fig. 4
Fig. 4
Clinical Global Impression responses at 1-year follow-up across CFS/ME specialist services
Fig. 5
Fig. 5
Flowchart showing follow-up of former patients treated 2–5 years previously by CFS/ME specialist services
Fig. 6
Fig. 6
Trends in patient-reported fatigue (Chalder) and physical function (SF36) from initial assessment up to 5 years follow-up among patients treated by CFS/ME specialist services
See this image and copyright information in PMC

Comment in

References

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