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Category Archives: Occupying
Enough Is Enough
After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion … Continue reading →
Posted in Advocacy, Commentary, Occupying, Research
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Tagged accountability, action, antiscience, biomarkers, CBT, delusional, denial, DHHS, discredited, funding, government, IOM, NIH, P2P, partnership, politics, priorities, psychogenic, psychosocial, researchers, respect, speaking out, spending
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40 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 →
Posted in Advocacy, Commentary, Occupying, Research
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Tagged accountability, action, antiscience, biomarkers, CBT, delusional, denial, DHHS, discredited, funding, government, IOM, NIH, P2P, partnership, politics, priorities, psychogenic, psychosocial, researchers, respect, speaking out, spending
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52 Comments
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
The Government Attitude Needed
Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading →