When all is said and done, and if we ever get the research money to look into what's messing us up, this will be a
neuro-immune disease. The more I read about the disease, the more I notice certain patterns of this illness in me, the more convinced I am that this is a neuro-immune disorder caused by a "hit and run" pathogen (or combination of pathogens). For whatever reason, there's a combination of circumstances during that initial flu-like onset that leaves your immune system in disarray.
Just today I was reading an article about a new study in the UK that saw remarkably similar patterns between ME/CFS and MS:
http://www.biomedcentral.com/1741-7015/11/205
Nobody tells people suffering from multiple sclerosis that it's "all in their head", and we need to get to a point where the overall public takes ME/CFS as seriously as MS. I guess once we get more definite diagnostics methods, things will change a little. I also hope the "CFS" term would go away, frankly.
When I have to explain my ordeal to anyone, these days I tell them I have
a neuro-immune disorder called M.E., and proceed to explain to them how serious it is. I also explain that in the 80s the CDC arrogantly dismissed it and called it "CFS", but that's a misnomer that doesn't do justice to such an awful illness. Not only I'm telling people about my ordeal, but I feel like I'm doing my part by educating them and explaining the seriousness of this disease.
And let me tell you, you should have seen the face of my primary care doctor, the same one that for a decade said "it was all in my head" and kept prescribing me antidepressants like candy, when I went back to him with a M.E. diagnosis, and my lab test showing
alarmingly low NK1 cell numbers, and impaired NK function. For the first time he was both shocked and embarrassed, instead of arrogant and dismissive. He was left almost stuttering, and at the end of our meeting told me to follow up with my immunologist, as he wouldn't know how to treat me.
I almost told him
"hey, aren't you gonna give me some Zoloft or Paxil to cure this thing?"... But I bit my tongue. I'm too polite, actually.