Your stories have affected me greatly. Such a waste of talent. I can't believe the governments around the world haven't recognized this great loss on a worldwide scale. It just blows my mind. When I was first ill in the acute state I couldn't remember my dog's name. I was working as an interior designer and was living in fear of quoting the wrong price for drapery or carpet installations, thousand dollar mistakes could be easily made with a working brain, without quoting estimates with a sick one. I became compulsive and anal going over and over job orders, measurements etc. Then I'd sleep an entire week-end resting my brain. I was exhausted and began to look it which doesn't inspire confidence in clients. My last year of work was my best (financially and being recognized) but it almost killed me. Still I'm grateful for the chance to feel success. When I left my place of employment, I said I'd be back in 3-6 months that was 25yrs ago. Had to go on disability, which is the only way I survived. You all should be commended for your survival too.
Hi PNR2008,
I think you bring a very important issue.
At what point would governments start to be concerned about the effects of ME/CFS in society? I mean, aside from our broken personal lives, how about the of the
loss of productivity? How about the
loss of competitiveness? As the numbers of people affected increase, and a larger number of the population slowly becomes affected by this,
when it's the time to worry about the collective impact of this illness?
I don't have the answers to those questions, but I can only extrapolate to other patients the tremendous impact that ME/CFS had in me. I was extremely active, productive, creative, and on my path to a bright career, which I strived for with tremendous work and dedication; I'm a mess now, lost in a stain of brain-fog and unable to multitask on the most minimal things. All my work and efforts thrown away, completely wasted.
At the larger scale, it's not just how ME/CFS destroyed our career prospects, but think about this:
our society as a whole has been impacted by all those contributions we could not make. How many others in our society and our communities have lost because of our loss, because of our inability to contribute, produce or create?
They estimate 1 million people are affected by this thing in the USA alone (17 worldwide). I think it's a very low estimate for two reasons:
- My own experience: I've been dealing with this curse for over 15 years, only to be diagnosed this year! I wasted time with dozens of doctors and specialists through the years unable to figure what was wrong with me. I was undiagnosed for years thanks (in part) to mediocre if not incompetent doctors. I think there must be scores of people lost on that medical maze, going from doctor to doctor until the final diagnosis (if they are lucky to get a diagnosis). Also, how many patients are shamed into keeping it to themselves for fear of being labeled lazy or weak? The more I think about it, that 1 million figure seems way low.
- Within my personal social circle I know of two people diagnosed with CFS this year, aside from myself (my girlfriend, and a former coworker). Since there seems to be an infectious trigger to this disease (although we are mostly in the dark about what the heck it is), wouldn't it be important to start looking deeper into the impact and growth of this medical puzzle?
I mean, how many millions of people going into disability will be acceptable? At what point we start taking seriously the potential devastation to the productivity and intellectual functioning of a considerable swath of our population? How many professors, doctors, authors, lawyers, engineers, and other qualified professionals do we think is ok to lose to this disease? What's the point to get yourself into mountains of debt to attend college, only to become intellectually disabled after graduation? At what point does our society decides to invest in solving a medical puzzle with the potential to become a health crisis of certain magnitude? Is it ok to keep ignoring an illness that's slowly chipping away our intellectual acumen and productivity?
These things may sound trivial for those unaware of ME/CFS. For those of us who had our lives broken by this illness, these are serious concerns.
I often felt my attention drifting, missing the right words, having to perform mental somersaults to express what I needed to say. :thumbdown: Absolutely ridiculous and frustrating. This, from a guy that had a thesis and a research paper published in academic journals 15 years ago. 
