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 etiology 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 treatment of ME/CFS. The different treatments can be subdivided into two groups, the pharmacological and the psychosocial therapies.
Most of the scientific articles on treatment emphasize the psychosocial approach. The most intensively studied psychological therapeutic intervention for ME/CFS is cognitive behavior 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 patients receiving 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.
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- Only 2% of respondents reported that they considered themselves to be completely cured upon finishing the therapy.
- 30% reported ‘an improvement’ as a result of the therapy
- And the same percentage [30%] reported no change
- 38% 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.
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.
Overall, 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 the effectiveness 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.
Source: Medisch Contact, February 2008, ISBN: 978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The Netherlands.