That’s good
@Binkie4 
I wouldn’t be able to help as I get mine on prescription in Norway and have no idea how it works in the UK.
In my case I’m pretty sure it’s the anti-inflammatory effect that is helping me. At least, something about LDN is definitely helping. If I forget one dose I will quickly be reminded, as the nerve pain will be back about an hour after, when the effect of the last dose runs out. I always feel the pain come back before I remember that I forgot to take it. Hard to believe that is placebo, but I’m open to the possibility. If it works...
I got significantly worse for the first 10 days, then suddenly it flipped and started helping instead. I don’t think my energy levels have improved much, just that the absence of chronic nerve pain/aches makes it so much easier to function.
I have heard just as many people tell me it didn’t do anything for them, or they felt worse while on it, as people who are helped by it. Have not heard anyone say they got worse long term, but then like with everything else people are usually quicker to tell success stories than failures.
My GP was pretty clear that if it doesn’t work within one month I should quit.
I completely agree I would like to see some proper studies on a ME/CFS cohort. My impression is that it’s a low risk drug at such tiny doses, but we don’t actually know that. And, of course, PwME often react differently to drugs than other groups. Studies definitely needed.