Category Archives: Occupying

An Open Letter to Dr. Koroshetz

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke. A plea for sanity, respect and science Dr. Koroshetz, I write to you tonight to personally … Continue reading

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Still #MillionsMissing

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading

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Pretty Much the Worst

One of the worst things someone said to me recently about my disability was: With all the stuff you’re doing, you work just as hard as someone working full time. The charitable and loving way to interpret this statement is: … Continue reading

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DIY Brain Rehab

Cognitive difficulties are part and parcel of ME/CFS. Brain fog, memory problems, difficulty with focus and attention, and reduced processing speed are just a few of the deficits we deal with every day. And cognitive effort can cause post-exertional malaise … Continue reading

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Naming

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading

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The Caffeine Disaster

I have a deep emotional bond with coffee. After I regained the ability to drink it without it tearing up my gut, coffee and I took our relationship to a new level. I switched to a Chemex, and found locally … Continue reading

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Brilliant Scientist Among the #MillionsMissing

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing. If you want a tiny peek into what I live with every day, … Continue reading

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I Am Among the #MillionsMissing

I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail. I miss more weddings, graduations, and funerals than I can count. I miss having … Continue reading

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How I Sleep At Night

One of the great incongruities of ME/CFS is that despite our bone-crushing brain-stealing fatigue, we are frequently unable to sleep. And if we do sleep, the quality of the sleep is very poor. This quickly sets up an escalating feedback … Continue reading

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Epic Eye Roll

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading

Posted in Advocacy, Commentary, Occupying | Tagged , , , , , , , , , , | 30 Comments