Peggy's Blog

"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...

The Ice Storm I know this ice storm in New England was potentially lethal for everyone, but the past few days were harrowing for me. I turned 40 on Wednesday, and on Thursday night the power went out – and stayed out for almost 48 hours. The temperature was around 15 degrees Fahrenheit or less at night and for much of the day, and my life turned into a Jon Krakauer novel very quickly. With multiple chemical sensitivities (MCS) everything is inaccessible (so if you’re an EMT, firefighter, hospital worker, M.D., nurse, or shelter worker, think about this). Calling 911 is generally out of the question, emergency rooms are full of toxic cleaning chemicals and scented people, and the carbon monoxide from generators or the toxins from wood smoke can be particularly dangerous or lethal (and hotels: forget about it). Because I was weak and sick going into the outage, I was suddenly like that guy in Into the Wild – picture the end of the movie version of the book – who has eaten the pois...

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 "...

A Normal Reunion I had on a peach rayon dress under the black robe and I was about to address the class of 1987. It was my idea for the three valedictorians to talk about the past, present, and future. Rob, whose best friend had died several years before of a rare disease, covered the past. He and I emailed years later about his lymphoma and my CFIDS (we both got sick in our twenties) but first my friend Kim was talking about the present. There were over 400 kids in cap and gown and at least a thousand people in the bleachers and I was terrified to stand in front of them and talk about the future. I had such severe stage fright, in fact, that I had been liberally using over-the-counter sleeping pills in the months before. My hair was big and lacquered that night. My sister once talked about how she never saw adulthood as some great thing. We both felt a sense of dread about it. I was uneasy that night, as if I knew the cliff in front of me – knew it like a Wile E. Coyote who h...

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...