Wednesday, December 8, 2010

The Frustration of CFIDS

It is frustrating to have a condition like Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome. It is an illness that family and friends don’t really understand or accept. It hurts emotionally to feel sick and wretched and for people to think you are making it up. Some try to understand but they never really get it. They expect you to function at the same level they can and you feel like a wuss for not being able to keep up.

Most of the time when people are sick they can go to a doctor for help and relief but not with CFIDS. There may be some doctors who understand but basically the illness does not have legitimacy. There has been little research. And there has been an absence of biological markers until recently when a link has been discovered between the retrovirus, XMRV and CFIDS. Yet it is not certain what can be done. The research shows a high percentage of people with CFIDS are positive for XMRV but not all. So what gives?

I have been toying with the idea of being tested for XMRV but with the time and expense of it all, what would I gain? This is particularly when the treatment available is in the experimental stage.

I have been following one blog with great interest of a physician, who along with her daughter have been tested positive by culture for XMRV.   They have sought help through treatment of antiretroviral medication. They have found a sympathetic doctor to treat them and monitor their progress. So far she claims it has helped. But I don’t know if I want to go there. I am moderately functional and I fear the often damaging side effects of powerful drugs. Perhaps I would take the risk if I were bedridden. But right now I prefer to take and watch and see approach.