Yup.. The Associations have not been able to change the label. These are just my observations and opinions: They do not agree with the label as far as I can tell, but it appears like they’ve chosen to play the game on the government’s terms in order to achieve some influence over the new guidelines etc. They’re saying that we have to differentiate between those with PEM (i.e. ME/CFS and some LC), and those without. I’ve been trying to argue that the issue isn’t the BPS conclusions, but the BPS framework itself and both the quality and the results of their studies. So we have to challenge that, or they’ll continue to exert influence and cause harm for so many patients. Although I can understand why an ME/CFS association prioritises ME/CFS patients.
No argument there. I didn't mean to be critical of the patient reps, just of the profession's obsession with the 'fatigue' construct.
I didn’t take it as criticism either. I’m a bit critical myself because I believe they focus too much on the lack of PEM in the BPS cohorts and not enough on the terrible study designs and results, and the underlying assumptions of the BPS model, both specifically for ME/CFS and in general.
