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- Jennie Spotila on CFSAC: Second Verse, Same as the First
- Laurie P on CFSAC: Second Verse, Same as the First
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Category Archives: Occupying
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 →
Posted in Advocacy, Occupying
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Tagged accountability, action, biomarkers, coping, drugs, funding, government, grants, living with, loss, Millions Missing, NIH, occupy, politics, speaking out, spending, suffering, treatment
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14 Comments
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 →
Posted in Occupying
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Tagged ableism, coping, disability, exhaustion, help, invisible, living with, occupy, pacing, priorities, stress, suffering
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42 Comments
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 →
Posted in Occupying
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Tagged action, brain, CBT, cognitive dysfunction, coping, living with, rehabilitation, treatment
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40 Comments
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 →
Posted in Advocacy, Occupying
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Tagged CFS, encephalomyelitis, living with, ME, ME/CFS, myalgic, name, occupy, politics, speaking out
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26 Comments
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 →
Posted in Occupying
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Tagged caffeine, coffee, interstitial cystitis, living with, pain, stimulants, treatment
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28 Comments
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 →
Posted in Advocacy, Occupying
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Tagged accountability, coping, DHHS, funding, government, living with, Millions Missing, NIH, occupy, pacing, politics, post-exertional malaise, speaking out, suffering
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17 Comments
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 →
Posted in Advocacy, Occupying
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Tagged accountability, coping, DHHS, funding, government, living with, Millions Missing, NIH, occupy, pacing, politics, post-exertional malaise, speaking out, suffering
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13 Comments
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 →
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
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Tagged action, coping, DHHS, fatigue, IOM, living with, medical education, occupy, speaking out, stigma, suffering
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30 Comments
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 →