Less of a learning curve more a staggering lurch toward understanding, a limited understanding, not just of this illness but of the social and political landscape I have lived my life within and had scarcely seen yet alone grasped.
Naive, so ill and reliant upon NHS support it took 18 months for a diagnosis and to be dropped like a hot potato, NICE guidelines were specific at this time that no treatment was to be offered.
I was 3yrs going down, so low, more ill than I knew you could be and it was PR that gave me the information to turn it around, a serious thank you to all of you out there.
In the absence of testing, care or the medical support you would expect of a third world country and so ill that death was preferable I tried anything and DHEA started to work along with ribose. Then Q10, sam-e carnitine and all sorts.
Slowly I came back from weird paralysis, memory loss and weakness which forced me to crawl if I had nothing to hold me up and still no doctor would even admit I was ill. Then I turned to the dark side and used anger and hatred to purge myself and to renegotiate my place in the world, you don't know the power of the dark side.......
I guess that some may find this disturbing but I wonder if men need a different path to that which women follow, not that women can't express anger, more that testosterone has a special role in the male make-up.
The next major step was methyl B12 and a major shift back toward health, which is where I am now.
I have blundered about and used nutrition and supplements and found a way, no thought or plan worthy of the name just supporting a body's regeneration. No certainties, no guarantees, just process
I don't know if this will be of any help Jamie, but for many years I had lost hope or rather felt foolish for thinking I could ever improve; I have, people do and with better care many more would. Things are changing for the better, in-spite of all the powerful interests ranged against us, even in the UK.