Tag Archives: advocacy

New York Magazine Article Biased and Riddled with Errors

Today I sent the following email to the Editor of New York Magazine: As a reader of New York Magazine, I have come to expect your articles to be accurate, well-researched, and fair. Unfortunately your recent piece, “Has Long COVID … Continue reading

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Ten Years of Unreal Time

Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly … Continue reading

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Community Gratitude

Talking about gratitude on Thanksgiving Day (in the U.S.) is cliche, I know. But I have to chime in because this year, I am feeling overwhelming gratitude for my communities. I have been blessed in my family and friends for … Continue reading

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Educating Doctors

The Philadelphia Inquirer recently published an article I wrote about educating doctors about ME. The article can be read here. This week, the Philadelphia County Medical Society is hosting a screening of the film Unrest, followed by a panel discussion … Continue reading

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The Truth Is Not Always Nice

My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, … Continue reading

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Unrest: Movie Review

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading

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Funding Unrest

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is … Continue reading

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NIH Attitudes Affect Policy: A Story In Two Parts

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading

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Guest Post: Homeless

I continue to struggle with the crash from hell, but Joe Landson has graciously stepped up to provide a guest post. His chance encounter on the streets of Washington, DC gave him a powerful insight into our own advocacy situation. … Continue reading

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