Okay, I feel the need for a follow-up post. Thank you to everybody reading or getting involved in the debate - either via comments or email. Debate is welcome.
First thing -I don't ever want to deride anyone else's experience of how ill they are (or were) and how much or little they improved. I am humbled when people write to me to try and help me, by spreading the word about whatever path helped them.
I just wish science would help us get to the bottom of this disparity. Is that the right word? This lack of consistency. There are obviously different forms of ME and CFS. My dear friend, Stuart was very ill for several years with crushing fatigue and he recovered to 99%. He never had the neurological / head symptoms that I have, but I don't doubt he had some sort of profound, immune-related illness. Many people suffer terribly and do get better, but a significant number remain ill for life. What is going on?
I would love if any of the mind-body therapies could help me. And I believe applying some of these techniques can help us adjust to life as-is and promote peace of mind, lessen stress etc. But they have never helped my physical and neurological symptoms. (Even beginning a sentence with a 'but' makes me feel like a but-but-but naysayer). And yet... and yet! This is my honest experience and that of thousands of PWME.
When people get cancers there are multi-faceted reasons why some will die and others will live and all the mind-body mysteries are some part of that. One would assume that positive thinking could only help. I read a study a few years back that said it wasn't as big a factor in recovery as expected.
I do advocate being positive as much as possible - whatever that means. Being positive can mean wholly accepting life as is. Making the best of life's randomness.
We really need a definitive diagnostic test for ME/CFS. Will it separate the ME from the CFS? We need answers to these confusions as to why many remain stuck at such low levels of function. And to those who improve: celebrate. There's no reason not to.