Try this one on for size – one day you wake up exhausted after a full night’s sleep, notice a few more aches and pains than normal, and mentally things are just not clicking. Over time, it doesn’t get any better. There are headaches, some severe ones, and an on-and-off sore throat. Could be a virus, maybe some kind of bug, but the symptoms refuse to go away. So you go to your doctor for blood tests and everything appears normal. But you can barely function and anything the least bit strenuous, either physically or mentally, leaves you absolutely drained. Only after you’ve lived with these debilitating symptoms for six months or more, absent any definitive diagnostic tools, once everything else is ruled out, your problem gets a name.
While that is a nightmare for any active, involved person it is a crushing reality for those who have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). More than two million Americans suffer from this one – and it’s a big mystery to scientists and medical researchers who don’t even know its origin; is it a brain problem, an immunological condition, an infectious illness, a metabolic disorder or all of the above. That makes treating or curing it seem out of reach.
If there ever was a disorder that would benefit significantly from human post-mortem brain donation this is it – how else will scientific investigators nail down what exactly is the anomaly that defines or triggers or causes ME/CFS? The National Institutes of Health (NIH) is anxious to untangle the conundrum, but as with any mystery, evidence must be collected.
That’s where you come in. Please share this message – or post it, if you would, so that those who suffer can consider the precious gift of brain donation. Hopefully answers will come sooner rather than later, especially for those who are struggling to cope with ME/CFS. In the middle of all these questions, one thing’s for certain: there’s never a bad time to contribute to the advancement of science.