ME/CFS Skeptic
Senior Member (Voting Rights)
Corsius et al. (2019). Zorg voor betere behandeling bij ME. Enquête onder ME-patiënten naar hun ervaringen met behandelingen bij ME.
A new patient survey was published two days ago by the Dutch ME/CFS Association (ME/CVS Vereniging). It was conducted online in 2017 and had valid results for 418 respondents. I would like to highlight some of its results regarding the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET). The survey asked about patients’ experiences with these treatments and, as in other surveys, these were mostly negative.
Of the 129 respondents who said they had followed CBT without GET, 47% said it had a negative effect on their health. Of the 142 respondents who said they had followed CBT with GET, 66% said it had a negative effect on their health. These figures can be compared to those of the 214 respondents who said they had received ‘biomedical treatment’ for ME/CFS. In this group only 11% said the treatment had a negative effect on their health. The survey also asked patients to give a score from 1 (bad) to 10 (good) to each of the three treatments. CBT with GET got an average score of 2,5, CBT without GET got a score of 3,7 and ‘biomedical treatment’ received a score of 6,3.
Also interesting: the survey asked whether respondents were members of a ME/CFS patient organization or not. Almost half was not a member, and they were equally negative about the effects of GET and CBT than the group that was a member of a patient organization.
The survey asked about the reasons for deterioration following CBT or CBT plus GET. The most supported statements were that the treatment was too taxing, that the therapist instructed them to push their limits. Patients said they increased their activity level as the treatment goal prescribed but that it was too much for them. More than 80% of patients who deteriorated in the CBT groups said it affected their ability to do daily chores such as the household and (self-) care.
A disturbingly high figure of 40% in the CBT plus GET group said that this treatment was mandatory, for example, because they thought they might get into trouble with work, school or receiving disability benefits if they didn’t follow the treatment.
Finally, the survey presented several assumptions of the cognitive-behavioral model such as the idea that they perpetuate their illness with unhelpful thoughts, fear-avoidance, deconditioning etc. On all these statements, ca. 90% of respondents said they disagreed.
The full report can be read in the link below. I’ve been told that there will be an English summary soon. Many thanks to all those involved.
https://www.me-cvsvereniging.nl/sit...nten/Rapport Zorg voor betere behandeling.pdf
A new patient survey was published two days ago by the Dutch ME/CFS Association (ME/CVS Vereniging). It was conducted online in 2017 and had valid results for 418 respondents. I would like to highlight some of its results regarding the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET). The survey asked about patients’ experiences with these treatments and, as in other surveys, these were mostly negative.
Of the 129 respondents who said they had followed CBT without GET, 47% said it had a negative effect on their health. Of the 142 respondents who said they had followed CBT with GET, 66% said it had a negative effect on their health. These figures can be compared to those of the 214 respondents who said they had received ‘biomedical treatment’ for ME/CFS. In this group only 11% said the treatment had a negative effect on their health. The survey also asked patients to give a score from 1 (bad) to 10 (good) to each of the three treatments. CBT with GET got an average score of 2,5, CBT without GET got a score of 3,7 and ‘biomedical treatment’ received a score of 6,3.
Also interesting: the survey asked whether respondents were members of a ME/CFS patient organization or not. Almost half was not a member, and they were equally negative about the effects of GET and CBT than the group that was a member of a patient organization.
The survey asked about the reasons for deterioration following CBT or CBT plus GET. The most supported statements were that the treatment was too taxing, that the therapist instructed them to push their limits. Patients said they increased their activity level as the treatment goal prescribed but that it was too much for them. More than 80% of patients who deteriorated in the CBT groups said it affected their ability to do daily chores such as the household and (self-) care.
A disturbingly high figure of 40% in the CBT plus GET group said that this treatment was mandatory, for example, because they thought they might get into trouble with work, school or receiving disability benefits if they didn’t follow the treatment.
Finally, the survey presented several assumptions of the cognitive-behavioral model such as the idea that they perpetuate their illness with unhelpful thoughts, fear-avoidance, deconditioning etc. On all these statements, ca. 90% of respondents said they disagreed.
The full report can be read in the link below. I’ve been told that there will be an English summary soon. Many thanks to all those involved.
https://www.me-cvsvereniging.nl/sit...nten/Rapport Zorg voor betere behandeling.pdf
