(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning on the occasion of a letter-writing campaign to NIH Director Francis Collins to increase funding for ME/CFS research.) Dear Dr Collins, I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse. Now imagine that flu never goes away. Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room. Now imagine you have that hangover all the time. Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed,...
"I have since had a deeper sense of the horror and wonder which lurk behind life and which are concealed, as it were, behind the usual surface of health." Oliver Sacks