@SweetSue - Now we won't miss important info and we can be on call 24/7, especially cause we love studying so late.
@Amy Gardner Is ME a degenerative disease of the brain, or entire nervous system?
Thank you for asking
Not enough is known for me to be able to answer that question with any clarity. It’s known that activity (any kind - and any amount depending on the person) can lead to a massive ramp up in inflammatory cytokines in the body. ANd this can give rise to a raft of possible symptoms and conditions (and therefore experiences - let’s not forget about lived experiences hey!?). There are other triggers as well (varies by person but sound, light, touch etc).
There’s not enough evidence to talk with certainty about degeneration over time but some researchers/physicians believe this is possible and that they have observed it and others don’t. I believe I have within myself. I know the more I do the worse I am and that this tends to accumulate over time if I keep trying to do things.
However, I also know though that my brain function, for example, is really good sometimes and not others (usually in line with how depleted I am, or not). I also had an amazing period last year, not long after I joined here actually, when I made some major adjustment to my relationship to food and eating and experienced a 40-60% improvement across the board (thanks largely to no sugar and ketosis). So what I’m saying there is that maybe what seems like degeneration is not happening the way it appears. I also experience less muscle weakness overall now, much less, than I did 20 months ago when I first had to put everything on hold - a counter-intuitive reality because I have been able to do
no excercise in that time, whereas when I ‘went down’ I was so easily weakened and exhausted that I could (just as an example) only trim and shape one fingernail per day (so it would take me 10 days to do my nails!). Only weeks prior I had been doing carpentry and was able to go surfing.
Recently, after some accumulated triggers (activity, social visits, ant bite, time alone while my partner was away) I’ve had little bursts of that weakness again as part of the crash. But then, when I consider that over my lifetime I have become less and less able, and that has been triggered usually by a period of trying to live a normal level of busy life (full time ongoing work employment etc. rather than project based or self employed work as a sound and performance artist) - it’s possible to perceive a degenerative pattern. I have definitely felt odd weaknesses and difficulty managing day to day things in an increasing pattern over the last 3 years (since a year of trying to manage a pretty happening full time schedule).
However - it could also be that because of certain events in my life that put me at risk of the condition (as has been identified: trauma incl. abuse, car accident, severe illness, recurring glandular fever when young, as well as genetic factors and environmental factors.) That I need to now figure and ‘rehearse’ a completely different way to live and move in the world. That is my current challenge - and why it’s not inappropriate (I hope) to be having this chat here at Sue’s place. There’s more to say on this - and perhaps there’s a place for that conversation feature for things like this going forward. BUt actually, having said that, I kind of think it’s important for it to be accessible to all. When you’re unwell and confused and scouring the internet for information and/or support, finding other people talking about it is like finding little beacons of light - don’t you think?
So - to go back to where this started, with the question about cannabis use and facitltiating homeostasis (as Bode asked in my journal - does he visit here too?), as I said - still very nascent stages. Because so much is unknown about the disease I’m experimenting form the perspective that it is at some level inflammatory and that that may be being driven by infections gone stealth or something else. I’m aiming for anti-inflammatory effects, and easing of PTSD/Hyper-vigilance as well (and there’s interesting work looking at the way the physiological state can be what gives rise to the ‘apparently’ psyche-emotional states as well). Wow, got to stop my wired but tired brain and body now!!
I’m pretty tired after writing that, and I wish the answers could be shorter! I’ll just go back and make the paragraphs shorter for you! ... Phew...
Can we please see this emoticon come back? I'm missing 
too. 
Thank you