Majority of ME/CFS patients negatively affected by Cognitive Behaviour Therapy

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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 affects 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.

http://home.planet.nl/~koolh222/cgtbijmecvsvanuitperspectiefpatient2008.pdf

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 HoofDate: February 2008

ISBN: 978-90-812658-1-2

The Netherlands

SUMMARY

BackgroundIn recent years, Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis

(ME/CFS), has been getting a lot of attention in scientific literature. However its aetiologyremains unclear and it has yet to be clarified why some people are more prone to thiscondition 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 pharmacologicaland the psychosocial therapies. Most of the scientific articles on treatment emphasize thepsychosocial 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 beenpublished. These studies report that this intervention can lead to significant improvements in30% 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 statedpercentages. Furthermore, we examined whether this therapy does influence theemployment rates, and could possibly increase the number of patients receiving educational

training, engaged in sports, maintaining social contacts and doing household tasks.

MethodBy 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.

ResultsOnly 2% of respondents reported that they considered themselves to be completely cured

upon finishing the therapy. Thirty per cent reported 'an improvement' as a result of thetherapy and the same percentage reported no change. Thirty-eight percent said the therapyhad 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 capableof maintaining social contacts or doing household tasks. A striking outcome is that thenumber 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 wasstatistically significant. CBT did, however, lead to an increase in the number of patientstaking 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 thosewho were not. Cases where a stated objective of the therapy was a complete cure, did nothave a better outcome. Moreover, the length of the therapy did not affect the results.

ConclusionsThis 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 reportdeterioration of their condition rather than improvement.

Our conclusion is that the claims in scientific publications about the effectiveness of thistherapy based on trials in strictly controlled settings within universities, has been overstatedand 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

Email: m.p.koolhaas@...