I can confirm the gut theory. I have an awful anxiety and psychiatric component with my CFS. And that all started out of the blue when I developed severe pancreas insufficiency, which changed my gut.
The issue is for me all those probiotics don't help. My gut simply is fucked.
I am not getting easily addicted to Benzos though, as I don't like to be on them, but sometimes I just have to. It's possible in my opinion to just use them responsibly. In particular since I've tried all natural options, and I get really bad attacks.
Do you get them as a form of mental PEM?
It took me a long time to realise, but it happens when I do too much on the basis of something mentally exhausting. At least before I became severe
What you could try is passion flower together with an antihistamine. This might do the trick a little bit, in particular for the waking up issue.
Would also add melatonin.
I am at the same point again because I don't have many more options for pacing, but what's "interesting" is that it always feels like dying, and rarely is related to real anxiety.
I was thinking maybe with neuro inflammation, we just have different parts of the brain inflamed. Like in this one Javanese study of brain inflammation in CFS, where they note the different areas. Oddly enough I never had anxiety before my illness. So why that should be the case I don't know. I blame my gut.
Nevertheless it's crazy making. The attacks are longer than normal panic attacks.
How are you with activities? Is there the option to limit it a bit more and see whether it has any effect?
I think it's a form of mental PEM for most.