CBT - Cognitive Behavioral Therapy in CFS/FMS/ME

There has been a major debate about the use of CBT (Cognitive Behavioral Therapy) in addressing CFS, FMS, and ME. I find this debate sad, because politics is playing a corrupting role in the argument.

CBT is a form of counseling that teaches coping skills and can help in cancer and many other illnesses. The problem with CBT in CFS is that some (I feel misguided) CBT proponents have adopted the additional approach of:

1. Trying to convince patients that they have no real illness, and
2. In some countries getting laws and rules passed making medical (non-psychological) therapies unavailable and making people ineligible for the insurance (health and disability) benefits they are entitled to.

I find this to be very damaging and destructive to patients, sacrificing their well-being so that a few therapists and many insurance companies can make increased profits—at the expense of patients' health and often leaving them homeless and crippled. Though I know this may seem harsh, and that the CBT therapists pushing these efforts see themselves as nice people who want to help, I feel their moving to impose their biases is driven (albeit unconsciously) by it making them more money.

A more sensible approach is, as in any illness, to combine physical therapies with emotional support. It's that simple, so don't be afraid to do CBT if you feel inclined to do so. Simply reserve the option to add the medical therapies as well.

Majority of ME/CFS Patients Negatively Affected by Cognitive Behaviour Therapy?

A recent pilot study (Koolhaas, et al., 2008, Netherlands) reports that only 2% of ME/CFS patients are cured by CBT, while the greatest share (38%) are adversely affected—most reporting substantial deterioration. It is especially notable that employment and education are negatively affected. This is in sharp contrast to the claims of psychiatrists and the Dutch Health Council that 70% of patients improve. Previous studies have also ignored or denied the negative effects of CBT on ME/CFS patients. The pilot study, recently published in the Dutch medical magazine, Medisch Contact, concludes that the previously reported claims of 70% improvement in ME/CFS patients receiving CBT are vastly overstated and misleading.

The following summary is from page 4 of the Dutch-language study.

Cognitieve gedragstherapie bij het chronische vermoeidheidssyndroom (ME/CVS) vanuit het perspectief van de patiënt, Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof

Date: February 2008
ISBN: 978-90-812658-1-2

The Netherlands

Summary

BACKGROUND: In recent years, Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS), has been getting a lot of attention in scientific literature. However its aetiology remains unclear and it has yet to be clarified why some people are more prone to this condition than others. Furthermore, there is as yet no consensus about the therapy of ME/CFS. The different therapies can be subdivided into two groups, the pharmacological and the psychosocial therapies. Most of the scientific articles on therapy emphasize the psychosocial approach.

The most intensively studied psychological therapeutic intervention for ME/CFS is cognitive behaviour therapy (CBT). In recent years several publications on this subject have been published. These studies report that this intervention can lead to significant improvements in 30% to 70% of patients, though rarely include details of adverse effects.

This pilot study was undertaken to find out whether patients' experiences with this therapy confirm the stated percentages. Furthermore, we examined whether this therapy does influence the employment rates, and could possibly increase the number of patientsreceiving educational training, engaged in sports, maintaining social contacts and doing household tasks.

METHOD: By means of a questionnaire posted at various newsgroups on the internet, the reported subjective experiences of 100 respondents who underwent this therapy were collected. These experiences were subsequently analysed.

RESULTS: Only 2% of respondents reported that they considered themselves to be completely cured upon finishing the therapy. Thirty percent reported 'an improvement' as a result of the therapy and the same percentage reported no change. Thirty-eight percent said the therapy had affected them adversely, the majority of them even reporting substantial deterioration.

Participating in CBT proved to have little impact on the number of hours people were capable of maintaining social contacts or doing household tasks. A striking outcome is that the number of those respondents who were in paid employment or who were studying while taking part in CBT was adversely affected. The negative outcome in paid employment was statistically significant. CBT did, however, lead to an increase in the number of patients taking up sports.

A subgroup analysis showed that those patients who were involved in legal proceedings in order to obtain disability benefit while participating in CBT did not score worse than those who were not. Cases where a stated objective of the therapy was a complete cure, did not have a better outcome. Moreover, the length of the therapy did not affect the results.

CONCLUSIONS: This pilot study, based on subjective experiences of ME/CFS sufferers, does not confirm the high success rates regularly claimed by research into the effectiveness of CBT for ME/CFS. Over all, CBT for ME/CFS does not improve patients' well-being: more patients report deterioration of their condition rather than improvement.

Our conclusion is that the claims in scientific publications about theeffectiveness of this therapy based on trials in strictly controlled settings within universities, has been overstated and are therefore misleading. The findings of a subgroup analysis also contradict reported findings from research in strictly regulated settings.

For more information, please contact Drs. M.P. Koolhaas at email m.p.koolhaas@consunet.nl.