Alwaysathome, thank you for taking the time to reply. Yes, I've tried numerous therapies and treatments in the 13 years of having this illness, spending a lot of money, none of which signficantly helped the M.E, including one year of weekly acupuncture. The things that have helped is good pacing, time and I believe prayer.
Like many illnesses, there is a spectrum from mild to very severe M.E and as I said although some people do thankfully recover, many, although they may make improvements, find full recovery is elusive and they can have good years and bad years. It's very unpredictable. Obviously a diagnosis of CFS/M.E does not mean everybody will be severe and that one can't definitely have relationships, manage part time work or raise children, although even with moderate to mild M.E it would not be easy, but not impossible with the right support network etc.. However, my experience for the last 8 years has been severe, moderate for 5 years before that, and I 've been too ill to work, form a relationship or have children. My child bearing years are almost over (am 41) so it is looking likely that I will not be a mother which is a loss but one I accept.
You noted sadness and grief in my posts about the loss of two close friends and i readily admit I do still grieve over them. I started to have counselling a few years ago about the losses that come with illness, but then my health deteriorated and I couldn't carry on visiting the counsellor. When my health improves, I think I will try and get counselling to help with the hurt I feel about my two friends. I am lucky that do I have a wonderfully supportive family, two fantastic friends who have stuck by me and have made some good M.e friends too. Day to day I don't get too upset about the complete loss of one friendship and rare contact with the other (although I know they see each other), but something this week reminded me of them and it brought it all to the fore, so obviously I haven't dealt with it completely.
But, as said, I think just because there is some grief in my life does not mean this is preventing me getting better. You think it's strange that I used my limited energy to write on here. Maybe, but I am housebound and single and one thing i can do now from my bed or sofa is use the pc if I pace it, so unlike many people i do have time to write. Lemondifficult's problem with her friend reminded me of a similar situation and i felt compelled to write. Funnily enough with my friend who bailed we actually never talked about my illness, but I could tell she didn't accept my physical limitations which made our friendship so difficult.
Interregnum, yes, you are right there has been some muscle tissue studies showing problems with mitochrondria. Some of them as far back as the early nineties, yet despite a lot of individual research studies showing abnormalities there has been no cohesive strategy to translate them into a diagnostic marker and mainstream medicine has ignored a lot the research that has been done. As to why this has happened, patient groups and M.E charities have various theories and I think it probably is due to a combination of reasons, such as ignorance, cost, practicality and so on. Things are starting to slowly change, with more research going on and hopefully a change of attitude in various institutions about M.E, with them starting to take it a bit more seriously. But according the doc of one m.e charity it's like trying to change direction of an oil tanker, it's a slow process, but one that is starting to happen, thankfully. Sorry for another long post!