I responded to a post in a friend’s LiveJournal, in which she talked about a friend of hers who has just been diagnosed with chronic fatigue syndrome. Her friend was very upset that my friend didn’t believe there is a cure for fibromyalgia or CFS (at least, there isn’t one right now). This is part of my response.
I think that the fact that there’s finally acknowledgment from the CDC and the like that CFS is real, and research proving that FMS is real and showing a genetic link, is very promising. That greatly increases the probability of research being done that might find a cure or at least decent treatments.
But no, I don’t really look for a “cure” for either disease. I think the best we’re going to see for some time is better treatments for the symptoms. I’m fairly certain that both diseases will be found to be genetic weaknesses triggered by environmental conditions that damage the nervous and/or immune systems. Gene therapy may be able to repair some of that damage. Maybe. Germline therapy might offer our descendants the possibility of not passing the genetic weaknesses on to their children.
But—not expecting a cure doesn’t mean that I don’t pay attention to the research and the latest information available about treatments.
I think hoping for a cure, in some ways, can be a way of trying to shift responsibility for how we proceed to the medical establishment. If there isn’t one coming, the only improvement we’re going to experience is what we manage with what’s available now. The improvements we make in how we eat, move, sleep, interact, etc. are up to us, and they can make a huge difference. We can get some relief from currently available medications by working with our doctors. We can use various techniques to improve our cognitive functioning or prop ourselves up despite fibro fog. And if we aren’t sitting around waiting for somebody else to hand us a cure, we’re more likely to do those things.