What is patently obvious to the majority of ME/CFS sufferers is not at all obvious to most others. It is not obvious to NHS staff. It not obvious to academics and politicians. It is not obvious to the public.
There are many reports of GET causing harm to ME/CFS patients. I myself was harmed by GET and you can read my brief story
here on #MEAction. These accounts are not without value but the problem is that these reports are anecdotes, individual cases which have not been formally validated.
Patients are not seen as reliable witnesses when it comes to the treatments they themselves experience – at least not until a qualified academic validates that experience. But I don’t want to moan about that here, I see the need for pragmatism; we have to work within this reality to expose the harm GET causes.
This week saw a paper published in the
Journal of Health Pyschology from Keith Geraghty et al, an analysis of a large survey from the ME Association (n = 1428) looking at symptom changes following GET, CBT (cognitive behavioral therapy) and pacing in ME/CFS. The results were also compared with similar data from other patient surveys (n = 16,665). One of the most significant findings of this review was that graded exercise therapy caused significant negative results in patients (54%–74%) across surveys. The review also found that CBT was associated with deterioration, but I am focusing this blog post on GET.