Some thoughts on the brain angle, because I'm optimistic about it. (Feel free to move this to the brain cells thread)
So we've come full circle and the psychs were right?
None of the new genetics would imply that ME/CFS is caused by normal day-to-day anxious feelings or low moods, getting stuck in a rut, or stress etc. If someone in your life believes that, they are still totally wrong. The idea that the thoughts in your head cause ME/CFS has been tested to death and not a single study has ever durably improved an objective end point (i.e. step count), never mind one that matters (i.e. being able to work full time again, or seriously exercise etc.) We are pummelled with this idea because it’s a stupid human bias (the
fundamental attribution error — assuming other people’s problems are due to their personality) and because its comforting for people to think their health is under their control.
Also: it sucks to feel horribly ill, be unable to think straight, and have someone around you suggest that maybe what you’re experiencing is just anxiety or depression — it’s such a total misunderstanding of what you’re going though, it’s obvious they aren’t really listening, it comes across as condescending. People are wrong when they say that to us and they are still wrong even if ME/CFS turns out to have genetic overlap with anxiety and or depression. The BSP-types think anxiety and depression *cause* ME/CFS, but the genetic connection suggests both are caused by some third thing (something outside our control, like how our synapses use neurotransmitters or how our eccentric medium spiny neurons grew when we were babies).
We’re in the dark ages of neuroscience and so there’s been tons of room for psychologists to blame everything on the patient. Because the brain has been a black box their theories have been unfalsifiable. But that’s changing. Once we can show pwME/CFS have something biologically different going on, the BPS theories are going to look as silly as arguing that someone can cure their scurvy with positive thinking.
I very much agree with this:
I had actually thought that [depression being biological] was fairly well established, however widespread the ignorance and prejudice against the "lazy" and "weak" individuals afflicted by it might be [...] the takeaway should be recognition that these people have as little to offer those suffering from depression as they do pwME. Their ideas and practices are also harmful to the depressed.
In my dream world: we cure ME/CFS, and if we need to drag depression and anxiety into the land of real, falsifiable science to do it, that's all the better.
