Monday, August 6, 2012

Coercive practices by insurance companies and others should stop

Title: Coercive practices by insurance companies and others should
stop following the publication of these results

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 the form of 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

A lot of the evidence has been summarised in a review (1). For some
reason this paper is quoted sometimes as justifying claims it 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

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, it's 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.

Tom Kindlon

* I'll use the term for consistency.


(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. or

(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.

(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:

(4) [Fatigue Syndrome: diagnosis, treatment and organisation of care]
KCE Reports 88. (with summary in English). Accessed: 6th August, 2012.

(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.

Competing interests declared: I work in a voluntary (i.e. unpaid)
capacity for the Irish ME/CFS Association

No comments: