Please add your thoughts.
That's why i feel that if XMRV is not it (and i guess we should know by the end of this year the very, very latest) we need to really do something. Like i said in a post yesterday, now that i have smelled some fresh air, i am never willing to go back to as it was before.After the first year of CFS people still have a lot of hope remaining. There probably are lots of treatment options left and many physicians who one could visit. After 5 years of CFS some hope fades away. After 10 years hope becomes very small. I see XMRV and I see the chance that this could be it but I truly suffer when reading that those on antivirals improve in the beginning but then seem to stop with no improvement at all. Time will tell us if this is just a phase but one thing is sure, it will take a long time till we receive specific and efficient treatment.
Yes, but this affects a lot of people. And people of all ages. And even if this might sound cynical, we don't die. So we have to be cared for for a long time. That's why it's really in everyone's interest (at least in the interest of the majority of the population) to end this.I can't agree that CFS is much more unbearable than other illnesses. It is a horrible illness to have, but there are plenty of other illnesses that wreak havoc and destroy lives. It seems rather petty (not calling you petty- using it as a generalisation) to 'compare' illnesses. Each illness is horrible in their own way. Just my thoughts though
I think one thing that makes ME/CFS particularly hard to handle is the post-exertional malaise. When you try to overcome this disease by fighting against it, soldiering on, it rises up to bite you in the butt, big time. That means that to learn to live with ME/CFS you must go counter to many of our western values. So at the same time we're coping with demolished lives, illness, and cognitive difficulties, we have to reframe our belief systems about self-worth.
There are all those books, movies, magazine articles about people who bravely battle to overcome disease. The common theme is that the patient/victim/hero carries on in spite of the handicapping illness and overcomes obstacles to get on with life. Other people admire them; "He's such an inspiration to us all," etc. Of course, that's how I want to be, and how I want to be seen. But living with ME/CFS requires just the opposite behavior. We have to learn NOT to fight against the disease, but to work with it, NOT to ignore the limitations, but to live within the boundries of the disease.
So we either have to see ourselves as not being heroic and brave in our struggles, or we have to redefine what it means to be heroic and brave. And instead of getting support and admiration from others for our efforts, we get reviled (accused of being lazy, malingering, or at best, neurotic).
We have the fatigue of undergoing chemotherapy, the constant pain of an autoimmune disease, the kaleidescope of symtoms of AIDS, and the cognitive difficulties of early Alzheimers. We have to deal with it without respect, social support, and sympathy from society. And according to the values systems that most of us were raised with, we don't even get to see ourselves as heroic in our struggles, because in order to survive we have to "go with it" rather than push past it.
There are many more devastating diseases, some truly hideous. I sometimes watch those medical programs like Mystery Diagnosis, just to remember that there are people coping with worse illnesses than this. However, few illnesses hit both the body and the brain so hard without evoking sympathy and support. And few require you to master a whole new paradigm of living in order to cope with them. I think that added burden makes ME/CFS especially had to live with.
This is the best abstract I ever read about this topic, thank you so much, ixchelkali. It is true in every word!
I want to fight, but I can't because everytime I do I get kicked into my butt. So I try to live with this illness but I can't either. It just wears you down.