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 Hoof Date: February 2008 ISBN: 978-90-812658-1-2 The Netherlands
*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 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 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 whetherthis 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.
*Results *Only 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 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 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.
For more information, please contact:
Drs. M.P. Koolhaas
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One suggestion for the drop-off in hours worked was that the effort of getting to/from the therapy sessions was at the expense of being able to use that energy to work.
That sounds reasonable to me. CFS patients are proven to have a Daily Activity Limit, so any activity requires a trade-off – if I’m going to spend time cleaning, then I’d better have something for dinner that requires almost no effort because I won’t have it in me to cook if I’ve used my energy to clean.
Someone has suggested that CFS be compared to a debit card: you have $100 (or 100 energy credits) to spend. You can spend them any way you want to, but once you’ve spent them, you’re bankrupt and can’t spend any more until you replenish. You can wisely spend that 100 energy credits 5 at a time for meals, brushing your teeth, combing your hair, toileting, etc., and have enough to get through the day. Or you can blow the whole 100 at once by exercising for an hour, and then you will need to ask someone else to cook your meals and spoon-feed you. Or you can blow 50 on dinner and a movie and not have enough left to shower and change into your pajamas when you come home, and have to sleep in your clothes.
Too many people can’t fathom the notion that I have to let the little niceties slide because I need to conserve energy for more important things. Normal people don’t have to choose between writing checks for bills and writing birthday cards, but if I have only 2 energy credits left after taking care of meals and hygiene, it’s more important to write the checks. It’s more important to me to fix 3 healthy meals each day than to put my hair in curlers and apply makeup and nail polish. Not getting dressed up and made up every day is not a matter of being depressed and not caring what I look like, but of making the conscious choice to save those energy credits to do something more practical, like load/unload the dishwasher.