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...

The candidates are talking about it, the pundits are talking about it, everyone is pointing fingers and assigning blame, but it turns out Billy Joel was right – the epicenter of the problem is somewhere near Allentown, PA. Yahoo News reports that Elizabeth Feudale-Bowes, aka the woman in "the bubble," is causing real estate values to tumble in her neighborhood, creating a ripple effect that is scarring the whole nation. Feudale-Bowes lives in South Whitehall township in what looks like a modern steel-and-porcelain shed, not so different from what you would pay a hefty sum to purchase if you were buying it from a hipster shed company such as MetroShed. Granted, her accessory dwelling has a little bit of a 4-H agricultural tent feel to it, but the environmentally-safe 160-square foot residence is more aesthetically pleasing than most safe dwellings I have seen (and certainly most dilapidated sheds). Paranoid neighbors are terrified that Feudale-Bowes living space is "...

Corkscrewed! Me and My Lyme! Just when I thought there were no other ways to be pathogenically screwed, I have been corkscrewed. I have spent most recent months in what Pamela Weintraub called, "the gullies of sleep so black that, except for the nightmares, I thought I might be dead," except for me most of this was waking sleep. It's hard to describe the vacuity of my days and nights, except to say this much illness is like losing time while being exceptionally present to it, not a bit dissociated from the torture. On November 1, I received a diagnosis of Lyme disease in addition to my other ailments, and my latest Western Blot test was positive, indicating the spirochetes have taken hold. With Lyme compounding the already-debilitating brain dysfunction of CFIDS and MCS, my writing has become flat and pragmatic when it comes out at all. One doctor noted "Dead Creativity" as a common personality change of Lyme, but the cognitive problems go beyond that. As A...

Who Is That Bubble Girl? I have to live a life immaculately free of chemicals: a bubble life. And by chemicals, I mean, the crap that has infiltrated almost every known product since WWII: the fragrance in other people's shampoo, the Tide and Bounce embedded in clothes, the formaldehyde in cabinet wood, the adhesive holding the imaginary world in place. I'm talking about modernity, and post-modernity, and air fresheners hanging from rearview mirrors; cigarette smoke and wood smoke. In the Tarot deck of access, I'm talking about: The World. That's why I live a life of virtual exile, down a dirt road far, far away. After contracting chronic fatigue immune dysfunction syndrome/myalgic encephalopathy (CFIDS/ME) at age 23 – a gripping, crushing, suffocating illness that seized me by the ankles and dragged me under – I thought it could not get any worse. In the year before, I had been riding my bike between cornfields in Ohio, miles uncoiling behind me. I had prodrome symp...