In addition,
@Jan, that survey was incredibly damning to anyone with sense. At the same time, the zeitgeist is that you cannot trust information that comes from patients. Their whole hypothesis of the illness is that we are not reliable narrators in our own experience: therefore, any subjective information from patients will be considered unreliable, by definition.
Psychology shows that
we pay attention to what we already believe; and even when we are presented with dissenting information, it can actually
reinforce our pre-existing beliefs as invent counter-arguments on the spot to support how we feel, which further solidifies our certainty. People who believe in CBT and GET as treatments may have seen this survey as
a sign of patients' "illness beliefs" in action, i.e. "look how far someone can go to support their belief they are really ill, SMH
."
To move NICE, we need it to come from objective data of harm, not subjective, and the data must be collected by scientists.
I can't guarantee that would provoke change, but I can guarantee that anything we say will be taken not with a grain of salt, but not at all.
Despite all this, the survey has served a very important two purposes, IMO:
- Patients looking at it now know to be very wary of NICE's recommendations for GET and CBT.
- People not already invested in the "unreliable narrators" picture of patients find it very convincing, including lawmakers and (some) physicians.
-J