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Open Access Highly Accessed Research article

The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database

Simon M Collin, Esther Crawley*, Margaret T May, Jonathan AC Sterne, William Hollingworth and UK CFS/ME National Outcomes Database

BMC Health Services Research 2011, 11:217  doi:10.1186/1472-6963-11-217

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Productivity costs may not drop dramatically when CFS patients avail of current services

Tom Kindlon   (2012-01-06 12:02)  Irish ME/CFS Association email

The authors appear to do a reasonable job, given the limits of the data available to them, in calculating the productivity costs before Chronic Fatigue Syndrome (CFS) patients reach the services in the UK. However, the reader is left with the impression that the productivity costs will drop dramatically once the patient reaches the services: "We had no data with which to assess the rate at which people with CFS/ME recover and return to work, either with or without specialized treatment. According to a systematic review of the literature, the proportion of adults in employment increased following interventions for CFS/ME (individualised rehabilitation, cognitive behavioural therapy and exercise therapy) and decreased in observational studies with no intervention [1]. Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment [2]."

However it may not be the case that the therapy offered in UK clinics (or in similar clinics elsewhere) will reduce the productivity costs by much if anything. It is interesting to consider what happened in Belgium where rehabilitation clinics for patients satisfying the same CFS criteria [3] were treated using cognitive behavioural therapy (CBT) and graded exercise therapy (GET), the same therapies recommended for use in the UK [4]. Extensive external audits were performed there on these (Belgian) clinics. The main reports are in French and Dutch [5,6]; however, for those who can't understand either of those languages, a five-page summary is available in English [7]. It says, "Employment status decreased at the end of the therapy, from an average of 18.3% of a 38h- working week, to 14.9% [...] The percentage of patients living from a sickness allowance increased slightly from 54 to 57%."

Collin and colleagues claim, "Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment [9]." However, although a recovery measure was included in the trial's protocol[8], the authors have made clear [10] that no recovery rate was reported in the Lancet paper [9]: "[i]t is important to clarify that our paper did not report on recovery; we will address this in a future publication."

Collin and colleagues also say, "[a]ccording to a systematic review of the literature, the proportion of adults in employment increased following interventions for CFS/ME (individualised rehabilitation, cognitive behavioural therapy and exercise therapy) and decreased in observational studies with no intervention [1]." This is indeed mentioned in the abstract of the review. However, when one reads the paper, the data on which this is based is very limited: 2 longitudinal studies reported employment at both times with no interventions[10,11], 2 rehabilitation programs [12,13], one trial of GET [14] and one trial of CBT[15]. The figures for the GET study are for everyone (n=66) who was in the trial so include the people who were in the other arm of the trial ( flexibility exercises and relaxation therapy) who then chose to do GET. So not those who had GET alone. This trial used the Oxford criteria [16] to define CFS, criteria which only requires the symptom of fatigue rather than the other symptoms required in the Fukuda criteria [3]. A study of those with fatigue has shown that satisfying the Fukuda CFS criteria [3] was the most powerful predictor of poor response to either GET or CBT [17]. So one cannot be extrapolate from such studies that those satisfying the Fukuda criteria, who are the group that Collin studied (and the group who used the Belgian clinics), will have the same improvements in employment measures. Similarly, the trial of CBT [15] didn't use the Fukuda criteria - patients either satisfied the Oxford criteria [16] or else criteria for F48.0 (Neurasthenia) [18] i.e. they didn't all satisfy CFS criteria at all. Employment data was only available for 51 of the 80 individuals who started CBT (64%). Finally, in one of the rehabilitation trials quoted [12], only two individuals took part it (at baseline neither was in employment but at follow-up, one of the two was).

All in all, the evidence that CBT, GET and similar interventions will increase productivity is not strong. If governments, and those involve in providing health services, want to decrease the costs associated with CFS, throwing more and more money at CBT/GET services may not be the answer; other methods of treating the condition should be investigated. As the authors have shown, costs associated with the condition per individual are substantial, so more expensive therapeutic strategies can be justified on cost grounds alone.

References:

[1] Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB: Disability and chronic fatigue syndrome: a focus on function. Arch Intern Med 2004, 164:1098-1107.

[2] White P, Goldsmith K, Johnson A, Potts L, Walwyn R, Decesare J, Baber H, Burgess M, Clark L, Cox D, et al.: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011, 377:823-836.

[3] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A: The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994, 121:953-959.

[4] NICE: Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy); diagnosis and management. National Institute for Health and Clinical Excellence (NICE); 2007.

[5] Rapport d’évaluation (2002-2004) portant sur l’exécution des conventions de rééducation entre le Comité de l’assurance soins de santé (INAMI) et les Centres de référence pour le Syndrome de fatigue chronique (SFC). 2006.
<http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf> . Accessed September 16, 2011 (French language edition)

[6] Evaluatierapport (2002-2004) met betrekking tot de uitvoering van de revalidatieovereenkomsten tussen het Comité van de verzekering voor geneeskundige verzorging (ingesteld bij het Rijksinstituut voor Ziekte- en invaliditeitsverzekering) en de Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS). 2006. Available online: <http://www.inami.fgov.be/care/nl/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf> Accessed September 16, 2011 (Dutch language version)

[7] Stordeur S, Thiry N, Eyssen M. Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie. Health Services Research (HSR). Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE); 2008. KCE reports 88A (D/2008/10.273/58) [The main link seems to (temporarily?) not to work on the Belgium government website; it can be seen combined with another file at: http://bit.ly/t6GxcN ; alternatively it is on its own at: http://sacfs.asn.au/download/ReportCFS-NL.pdf ]

[8] White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol. 2007 Mar 8;7:6.

[9] White PD, Goldsmith KA, Johnson AL, Walwyn R, Baber HL, Chalder T, Sharpe M, on behalf of the coauthors. The PACE trial in chronic fatigue syndrome - Authors' reply. The Lancet - 28 May 2011 ( Vol. 377, Issue 9780, Pages 1834-1835 ) DOI: 10.1016/S0140-6736(11)60651-X

[10] Tiersky LA, DeLuca J, Hill N, et al. Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Appl Neuropsychol. 2001;8:41-50.

[11] Vercoulen JH, Swanink C, Fennis J, Galama JM, van der Meer JW, Bleijenberg G. Dimensional assessment of chronic fatigue syndrome. J Psychosom Res. 1994; 38:383-392.

[12] Dyck D, Allen S, Barron J, et al. Management of chronic fatigue syndrome: case study. AAOHN J. 1996;44:85-92.

[13] Marlin RG, Anchel H, Gibson JC, Goldberg WM, Swinton M. An evaluation of multidisciplinary intervention for chronic fatigue syndrome with long-term follow-up, and a comparison with untreated controls. Am J Med. 1998;105:110S-114S.

[14] Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ. 1997;314:1647-1652.

[15] Akagi H, Klimes I, Bass C. Cognitive behavioral therapy for chronic fatigue syndrome in a general hospital: feasible and effective. Gen Hosp Psychiatry. 2001;23:254-260.

[16] Sharpe MC, Archard LC, Banatvala JE, et al. A report--chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21.

[17] Darbishire L, Seed P, Ridsdale L. Predictors of outcome following treatment for chronic fatigue. Br J Psychiatry. 2005 Apr;186:350-1.

[18] ICD-10. The ICD-10 classification of mental, and behavioral disorders. Geneva, World Health Organization, 1992.

Competing interests

I am the information officer of the Irish ME/CFS Association. All my work for the Association is voluntary (i.e. unpaid).

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