Peggy's Blog

San Francisco was my destination in 1992 , now it's the site of one of many May 25 protests around the world about ME/CFS, and the "millions missing," of which I am one. This May is also my 24th anniversary of getting sick, coinciding with my 25th Oberlin College reunion. In May of 1992, I was waiting around for Oberlin Commencement (I had graduated officially in December of '91) and I had suddenly contracted the ME/CFS "flu-like illness" that harkens the onset of the disease, though I had experienced what is known as "prodrome" (early, shadowy, pre-illness symptoms) in the years before, and in fact almost dropped out of Oberlin and stayed around the Bay Area in the Fall of 1998, when my body seemed to be saying to me stay but I didn't listen. But let me backtrack to the "prodrome" which -- if research would help us -- could become useful foreshadowing for patients and doctors: I had left Oberlin for a semester off in the Fal...

The best offense is a good offense: what we need to learn from AIDS According to the CFS Untied blog , the CFIDS Association of America just proudly touted an “advocacy” style for ME/CFS that consists of “using one’s inside voice”: The president of the CFIDS Association of America said that she heard the announcer on National Public Radio state that "we use our inside voices to bring you the news." She likened that to the "inside voice" of the CAA as they pursue their activities of stimulating research, reporting on the success of their grantees, and sharing information about upcoming events and important publications. A quarter of a decade into the crippling epidemic of ME/CFS, we have yet to learn what AIDS activists taught us about inside voices or, more generally, about interiority from the perspective of men who had come out of the closet only to be faced with social ostracism and Kaposi’s sarcoma. Those activists didn’t use inside voices unless the...

ME/CFS and the Retroviral Elephant In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death. The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME e...