If I might add a response
@Murph,
@debored13,
@Gingergrrl
I really appreciate the skepticism. You don't live in the 'free world' if you don't come with skepticism. I flew out of the Middle East at the age of 17 to enroll at Cornell in the U.S. because that meant something to me. But I think my take away from my time there (and outside college in other North American cities) is that things do not get done without making a lot of noise.
So when I read Jeff's story, 12 years after I got ill myself upon merely arriving in a new country, I got the legitimacy of his struggle and it resonated with me quickly. I spent a lot of time thinking that something was seriously mentally wrong with me. I went from being sociable, energetic and hard-working to an anxious, sick, and wasted shell of a person. You don't get exposed to a lot of societal and biological taboos in the Middle East. I was so shaken by the internal health shifts that I literally dove into depression and worse.
I understand Jeff's position and wish he didn't have to go through the mess he did to find help. I spent so long wondering what was going on, trying to get better, and just barely making it through college. I have driven my family head first into this with me, still get told I am a hypochondriac and I still have to answer to them in every financial respect because I can't work. I am only just beginning to earn their trust, if you will.
It is a very good thing that the radiology/scans are there to show for something. You come to notice that a lot of people crave reality, something graphic to confirm what they can only conjure. I was relieved when I got results and it was totally a kind of guess. I have to read the discussions on these boards and be on top of my symptoms otherwise my world crumbles.
I really hope that we'll start another thread for CCI and CFS. My diagnosis was expensive as it was for others. It's not all for nothing (simply put). I remember having mild symptoms before getting really ill. My neck would slouch, I frequently felt tired (fatigue, noticeable to others by my frequent yawning even though I slept 'normally'), hay fever, poor short term memory, sensitivity to light (sudden migraines and sneezing with exposure to sunlight).
But symptoms got *so much worse* and more varied after I came down with 'something' which might have been EBV. I'm talking about a short period of time here -- less than a year and then I was shipped off to college. When I got sick (U.S.) they couldn't confirm it was EBV as I remember the doctor saying. But how to explain getting sick so fast (and I mean, lightning-fast onset) and then having that all be based on CCI? The lower back pain, upper cervical issues, even sleep issues and post-exertional malaise were never a problem for me before getting sick.
CCI as originally and fundamentally causative of CFS still doesn't quite sit with me.
