Hello @ frozenborderline,
I'm a long term sufferer & volunteer for founding agencies over the years. In my opinion (just that, of course) ME is caused by more than one or even two causes. I do believe progress is being made with one of them, but remember that many researchers across the world are working on this problem. In the beginning we had essentially few to no researchers, so things are progressing albeit it at a slow rate, but this is a very complex problem and with so much more interest by researchers, the answers will be available.
May I ask why you're wearing a neck brace? Do you think you have, or even been diagnosed with anything like CCI? I had surgery for Arnold-Chiari Malformation about 35 years ago. I still have the symptoms of CFS/FM/ME unlike people like Jeff White and Jen Brea (and good for them!!.) who have recovered. If you are having surgery, when is it being done? I'm sure you've carefully checked into the competence of the neurosurgeon.
I think molds, funguses, accidents, congenital abnormalities (me), pesticide poisoning, viruses and who knows what else are all implicated in this illness. There is not going to be just one answer for all...how I wish, but problem solving of a different type. It's very complicated and I so hate seeing young people suffer from it from such early ages. I'm now 74 years old, have had symptoms that were obvious from the age of birth - 18, but didn't have my first surgery until I was about 40.
You're doing your very best and I have admiration for you as you travel this well trodden path. Perhaps you'll be one of the fortunate ones who will have a remission of all symptoms after surgery. Let's hope. Lenora.