M.E. stands for myalgic encephalomyelitis (or myalgic encephalopathy), which is the name of the disease that turned my life upside down 6 years ago. M.E. is also known as chronic fatigue syndrome, but the word "fatigue" doesn't begin to describe the total exhaustion I feel now. I was a person who could do 90 minutes of high-impact aerobics, climb 1200m in elevation over 6 km on a 30-degree day, or hike 16 km with 25 kilos on my back. None of those experiences even came close to making me feel as exhausted as I feel just getting out of bed in the morning these days.
What's worse than not being able to be physically active any more is not being able to use my brain the way I used to. I've lost about 12 IQ points, and my short-term memory is a disaster. What's more, my energy is so low that just using my brain exhausts me. The brain uses 60% of our blood sugar, so when your energy is already near zero, just thinking is tiring. I can typically do serious study for about half an hour before the words start to get blurry and I can't remember what the last sentence said. It makes for glacially slow progress, and I hate it.
I don't normally complain but I'm doing it for the cause of raising awareness about this disease. M.E. has a higher prevalence and causes more disability than many high profile diseases, but gets little research funding, mainly because we are all too tired to lobby for it! The medical research that has been done so far has found numerous physiological abnormalities in people with M.E., but it's all very technical and hard to explain. Some day I hope we won't have to explain, and saying "M.E." will be like saying "M.S." or "diabetes," and people will just want to help.
If you want to help, do make a donation to an M.E. organization in your country, such as the ME/FM Action Network in Canada, the CFIDS Association of America, or Action for M.E. in the UK. Thanks!
VARIABLE, and therefore miserable condition of man! this minute I was well, and am ill, this minute. I am surprised with a sudden change, and alteration to worse, and can impute it to no cause, nor call it by any name. We study health, and we deliberate upon our meats, and drink, and air, and exercises, and we hew and we polish every stone that goes to that building; and so our health is a long and a regular work: but in a minute a cannon batters all, overthrows all, demolishes all; a sickness unprevented for all our diligence, unsuspected for all our curiosity; nay, undeserved, if we consider only disorder, summons us, seizes us, possesses us, destroys us in an instant.
—John Donne, Devotions Upon Emergent Occasions (via)
