It's important to remember that some people have found great benefit from certain treatments but have not necessarily recovered, and may even be continuing to deteriorate.
1. Pacing, unsurprisingly. It makes the whole thing far more livable, and has probably prevented me from deteriorating further.
2. Darkness therapy (see this site for details). This improved my sleep by perhaps 80%. The main thing is that I can now go to bed at a normal time and stay on a 24 hour schedule, which is fantastic for someone with Non-24 Sleep-Wake Disorder (I was on a 25 hour schedule before). Light therapy helped too, but the main thing that I've been using consistently is darkness therapy, I seem to be able to get away without the light therapy these days. It's hard to tell how much this helped the ME, I've had a lot of different factors involved over the years, but the appalling sleep problems I had before were very noticeably making life a lot worse. This was partly because I was on a completely unpredictable schedule and couldn't even have support workers in without risking severe sleep deprivation, and partly because all the sleep deprivation hugely increased fatigue, pain, brain fog and so on. When I occasionally have bad sleep again, e.g. due to a medication problem, it's shocking how much worse it immediately makes me.
1. Pacing, unsurprisingly. It makes the whole thing far more livable, and has probably prevented me from deteriorating further.
2. Darkness therapy (see this site for details). This improved my sleep by perhaps 80%. The main thing is that I can now go to bed at a normal time and stay on a 24 hour schedule, which is fantastic for someone with Non-24 Sleep-Wake Disorder (I was on a 25 hour schedule before). Light therapy helped too, but the main thing that I've been using consistently is darkness therapy, I seem to be able to get away without the light therapy these days. It's hard to tell how much this helped the ME, I've had a lot of different factors involved over the years, but the appalling sleep problems I had before were very noticeably making life a lot worse. This was partly because I was on a completely unpredictable schedule and couldn't even have support workers in without risking severe sleep deprivation, and partly because all the sleep deprivation hugely increased fatigue, pain, brain fog and so on. When I occasionally have bad sleep again, e.g. due to a medication problem, it's shocking how much worse it immediately makes me.