Words Do Matter
Just thought I would pass along something I picked up here and there. A syndrome is defined medically as a set of symptoms with unknown etiology. Etiology is the study of the causes of medical issues. As soon as it is positively confirmed, for the record, that XMRV causes our symptoms; the name chronic fatigue syndrome can no longer be used to describe our illness. It will no longer be a syndrome, it will be a disease in the medical literature...namely, X Associated Neuroimmune Disease. Just as soon as antiretroviral meds are shown to be effective in alleviating our symptoms, that will be the end of chronic fatigue syndrome for us. That will be proof that the virus is causing the symptoms, so the disease will no longer be unexplained. Our disease will be XAND, the disease formerly known as chronic fatigue syndrome. If this sounds too easy, believe me, I feel the same way. I have had this disease for at least 45 years now, and I haven't yet accepted the new reality either, to be honest. This will take some "getting used to"...actually a lot of "getting used to". My hat is off to Dr. Daniel Peterson. He endured vilification by his community, ridicule by the CDC, lampooning in the media, relative poverty at times personally when he spent his own money to run tests on patients...yet he never gave up on us. It certainly would have been easier to give up on us, but he stayed the course all these years. We all owe him a debt of gratitude, and also to Annette Whittemore, too. She funded WPI with her own cash.
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They also call it Myalgia Ensephomalitis or ME for short. It is a neurological condition. Related to MS and fibromyalga. Hugs Marlene
ME will bite the dust, too, Marlene; if things keep going in the direction they have been. Anyone who tests positive for the virus and gets help from anti-retrovirals will no longer be labeled as anything but XAND patients.
I read recently that the researchers at WPI have hopes of getting a blood test ready for widespread use within months, not years. And trials of antiretrovirals will be under way soon. Cross your fingers.
Dr Peterson is to be admired for his conviction, and not giving up. It is creative minds that produce results!