Peggy's Blog

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...

Fly Away to XAND -ado, or Where Is Elaine DeFreitas ? The discovery of antibodies to the retrovirus XMRV in the blood of 95 percent of ME/ CFS patients has led to an air of celebration best expressed by these 20+ year ME/ CFS patients who partied with funny hats that read "I heart retrovirii ." It has also led to a new name for the illness: XAND or X-associated neuroimmune disease. But two questions are on everyone's minds: how do we keep the momentum going when the patient community is so frail, and where is Elaine DeFreitas ? First, let me talk about XAND and why it's so exciting . Retroviruses are rare in the general population, whereas most other viruses found in ME/ CFS patients are ubiquitous. Most viruses discovered in ME/CFS patients have been common or fairly common herpesviruses such as CMV , Epstein Barr, HHV -6. A finding of a retrovirus in 95 percent of a patient group argues very strongly for causality. This is why our ME/ CFS luminar...

"First, Do No Pharma" As Audre Lorde once wrote, the master's tools will never dismantle the master's house. In a complicated world of fast-moving virology, shape-shifting illness branding, and vaccine controversies, it is not always easy to find the master or deconstruct his toolbox. With the recent discovery that 95 percent of ME/CFS patients have antibodies to the retrovirus XMRV, the first master is obvious: the Centers for Disease Control. The CDC, as Hillary Johnson recounted in Osler's Web, swept aside (and distorted) the evidence of a retrovirus in ME/CFS patients that was discovered by Elaine DeFreitas in 1991. So ME/CFS patients are waiting for the CDC's counter-attack on this new XMRV science, which has been all-but-prophesied by CDC's CFS program director William Reeves' statements to the press. As he stated in the New York Times on the XMRV discovery, " If we validate it, great. My expectation is that we will not.” Pers...