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Category Archives: Occupying
Resist. Persist.
Am I the only person who feels like she is in a leaky boat, surrounded by sharks? Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, art, cello, living with, music, occupy, pacing, politics, priorities, reading, speaking out, stories, suffering
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19 Comments
Another Reason to Stay
My Mom played the cello every day, even while enduring chemotherapy. Her last lesson was less than two months before she died. Mom loved the cello, but I never really understood her dedication. Even when I took piano lessons as … Continue reading →
Posted in Occupying
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Tagged balance, cello, coping, family, grief, learning, live, living with, music, occupy, persistence, personal, speaking out, strength, suffering, thrive, triumph, victory
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31 Comments
The Wall of Nope
I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading →
Posted in Commentary, Occupying
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Tagged balance, caregiver, coping, depression, emergency, family, health, living with, occupy, pain, personal, post-exertional malaise, priorities, stress, stroke, suffering
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44 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 →
Posted in Advocacy, Commentary, Occupying
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Tagged accountability, action, CFSAC, DHHS, distrust, FOIA, government, NIH, P2P, politics, recommendations, speaking out, stereotypes, truth
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17 Comments
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
A “Standard” Patient
Today, Joe Landson shares his experience as a standard, real patient. I work occasionally as a standardized patient, though there is not much standard about me. Standardized patients are actors; we play out a script of symptoms for health care … Continue reading →