My impression is that severe ME is where the rubber meets the road. With mild and moderate ME patients, minor improvements in function are sometimes possible because some of us are not pushing ourselves to 100% of preexisting activity ceiling every single day so when the CBT/GET/physiotherapy lobby is called in and says to the patient "do a bit more" and the patient does a bit more it's declared as a treatment success when in actuality their activity ceiling didn't expand at all, they're just pushing themselves to 95% or 100% instead of 90% of what they were capable of to begin with. The delusion can thus persist in the mental health professional's head that something he/she said to the patient modified their illness beliefs and altered their symptoms. But when confronted with a level of disability where mere existence is enough to push you over the anaerobic threshold, and the patient is already doing 110% of activity ceiling merely by lying in bed and running metabolic processes, these so-called health professions have two options:
- accept that it is a physical illness where energy production capacity cannot magically be made more abundant by talking to the patient in a patronising way or doing physiotherapy on the patient, thus losing their income since they would have to accept that if severe ME is biological, by logical extension so are mild and moderate, and thus there is no point in trying to rehabilitate any of them out of anything;
- continue to pretend that ME cannot possibly be THAT bad so if it seems very bad in relatively rare cases then it must be that the patient rested too much and deconditioned themselves, or it must be pervasive refusal syndrome and the patient should be forced to attain a less egregious level of disability somehow through some magic intervention involving talking and behavioural activation.
In psych parlance, severe ME causes cognitive dissonance in the typical health professional who, let's face it, says to the patient "ME is real" but doesn't REALLY believe in the biological reality of ME, i.e. people in positions of authority who hold some nebulous BPS thoughts about the magical interaction between the mind and the body.
Either way, the comforting delusion they hold that "it's only ME" gets confronted with stark reality in severe and very severe cases whereas the mild and moderate can sort of be hand-waved away as people who are sort of muddling through, just not psychologically strong enough to do a full day's work or normal family life or whatever.
