Coercive practices by insurance companies and others should stop following the publication of these results
Posted by tkindlon on 06 Aug 2012 at 02:17 GMT
For over a decade now, some individual patients with Chronic Fatigue Syndrome (CFS)* in Great Britain and Ireland (and probably elsewhere) have been pressurised by insurance companies into undertaking graded exercise therapy (GET) and cognitive behaviour therapy, based on scheduling increases activity. This seems to have been largely due to hype around the efficacy of GET and CBT and extrapolations from subjective measures, as the evidence that such interventions are efficacious in restoring the ability to work is week.
A lot of the evidence has been summarised in a review (1). For some reason this is quoted sometimes as justifying claims it is is evidence-based to say that GET and CBT have been shown to restore the ability to work in CFS. However the data is far less impressive. It is summarised in table 6. The accompanying text says: "Among the 14 interventional trials with work or impairment results after intervention, there were too few of any single intervention with any specific impairment domain to allow any assessment of association."
The PACE Trial is by far the biggest trial of these therapies in the field. It shows neither CBT nor GET led to an improved rate of days of lost employment [Means (sds): APT: 148.6 (109.2); CBT: 151.0 (108.2); GET: 144.5 (109.4); SMC (alone): 141.7 (107.5)] (Table 2) (2). Neither CBT nor GET led to improvements in numbers receiving welfare benefits or other financial payments (Table 4). These results are in contrast to the self-reported improvements in fatigue, physical functioning and some other measures (3).
This information comes a few years after a major audit of Belgian CFS rehabilitation (CBT & GET) centres (4). The sample size was large, with over 600 patients with a confirmed diagnosis of CFS (using the Fukuda et al. criteria (5)) taking part. It "comprised on average per patient 41 to 62 hours of rehabilitation" It found that "physical capacity did not change; employment status decreased at the end of the therapy." Again improvements were found in some self-reported measures.
The ethics of using coercion in medical practice generally is very questionable. Coercive practices should certainly be very questionable with therapies where they are plenty of reasons to believe they can cause harm (6). Furthermore, high rates of adverse reactions have been reported by patients, particularly with GET (7).
Also chronic fatigue syndrome causes a reduced amount of energy to be available to individuals. It can be very challenging to be ill with CFS, trying to balance the different aspects of one's life with reduced energy levels. People with CFS shouldn't be forced without good reason to have to do a time- and energy-consuming CBT or GET course. The data shows there isn't a good reason. Of course even if the results were better, its still very questionable whether coercion is justified: we don't coerce (healthy) people to exercise for at least 30 minutes five times a week even though it would be good on average in terms of people's health. Similarly, we don't force people to drink less than the recommended limit for daily and weekly alcohol assumption. And just to be clear again, the benefits (in comparison to the risks) of CBT or GET are not nearly as clear cut as the benefits (in comparison to the risks) of exercising regularly or avoiding excesses of alcohol are for people in the general population.
Hopefully the publication of this trial will stop coercive practices in the CFS field once and for all.
* I'll use the term for consistency.
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 May 24;164(10):1098-107.
http://archinte.ama-assn.... or
http://archinte.ama-assn....
(2) McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, et al. (2012) Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist
Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis. PLoS ONE 7(8): e40808. doi:10.1371/journal.pone.0040808
(3) White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377: 823–836.
(4) [Fatigue Syndrome: diagnosis, treatment and organisation of care]
KCE Reports 88. (with summary in English). Accessed: 6th August, 2012.
https://kce.fgov.be/publi...
(5) 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 Dec 15;121(12):953-9.
(6) Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009;30(3):284-99. Review.
(7) Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Bulletin of the IACFS/ME. 2011;19(2):59-111.
http://www.iacfsme.org/BU...