Re:Cognitive behavioural therapy use does not imply a psychological cause for ME/CFS
The lack of enthusiasm for CBT devised for ME/CFS is not a result of
ignorance or prejudice. The problem is that the actual protocols described
in the scientific literature are not 'adjuncts' for those with depression
or other psychological problems associated with chronic disease. The CBT
is generally not part of a tailor-made, multi-component programme to help
improve coping. As far as ME/CFS is concerned, it is being promoted as a
first line treatment for all, as used for OCD or phobias. Imagine having
MS or cancer and the only therapy on offer is CBT and advice on exercise.
What is particularly frustrating is there are other, more flexible
and acceptable treatments for ME/CFS. Moreover, as all the tested
interventions tend to be equally effective and outcomes appear to be
mediated largely by increases in self-efficacy, practitioners and patients
can choose one and proceed to another depending on personal preferences
and changing circumstances. NICE should have reviewed the guidelines to
increase the available therapeutic options, but they declined. The
evidence was there; but the willingness to evaluate it was not. Courteous,
well referenced letters had no effect. No wonder then, that a few 'angry
young men' and their friends began to lash out. That they also ended up
attacking those on their side was collateral damage. If decision makers
don't listen to reasonable arguments, if groupthink leaves severely
disabled people with an inappropriate treatment which at best has a modest
effect on tiredness and one's ability to carry a sack of potatoes, anger
is an entirely understandable response.
The solution is more respect for those with a different approach,
more communication with a wider group of experts, better diagnostic
criteria as well as longitudinal studies including brain scans and a
comprehensive assessment of the immune system. And needless to say, we
need and deserve an immediate updating of the guidelines by NICE.
EM Goudsmit FBPsS
Competing interests: Health psychologist with specialist knowledge of ME and CFS. I requested a review of the NICE guidelines, giving details of new evidence that met their criteria.