Tag Archives: occupy

CFSAC Meeting Information and Logistics

The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information … Continue reading

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A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office … Continue reading

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CFSAC Around the Corner

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while … Continue reading

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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

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Tasha

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … 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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Meeting with the Assistant Secretary

As I mentioned in this week’s RFA Ticker, I participated in a meeting with the Assistant Secretary for Health Dr. Karen DeSalvo. You can read the meeting summary on MEAction, and I’ve reprinted the full text below. From a personal … 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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Scandal

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading

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