Have there been any high-profile critiques of open-label, subjective-measures BPS randomised trials? If not, why not?

Perhaps because of the unspoken feeling that if a disease isn't real, it's unimportant if the research into it isn't real either - no one's going to make a big name for themselves by pointing out that it's pretend science when the people pretending to do the science already know it's pretend and are happily tipping everyone else off with winks and nudges.

 

Sorry, you're right, I did!

 

That's an interesting point that I hadn't considered but there are lots of other conditions to which BPS stuff is getting applied, and I would have thought that the whole field was awash with this design problem.

 

We've been subservient to a psychology culture since the early days of TV.

That's only worsened by institutions like the NHS and NIH and CDC.

I don't think I'm alone in saying I was raised to look at psychologists as the arbiters of reality. To look at disinterested researchers within the NIH and CDC and NHS as the standard bearers and tip of the spears of medical progress and fact.

Now I wouldn't trust any of that ilk, despite my earlier misplaced reverence. I feel like every confidence in them has not only been betrayed, but has been used against me and people like me. Like we're complicit in our own undoing.

To misquote Hozier's "Take Me To Church":

I worshiped like a dog at the shrine of your lies,
I told you my sins so you could sharpen your knives.

If pwME can feel that way, how can we expect others to pick up our torch? Obviously it should happen regardless. I suspect, however, it will have to involve medical professionals with loved ones with ME/CFS, individuals with a vested interest that extends beyond greed and legacy concerns.