Tag Archives: occupy

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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Best In Show Blog

I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards! Now we enter the part of the process where you can influence the … 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: Sickaversary

My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading

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Book Review: Through the Shadowlands

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to … Continue reading

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#MillionsMissing 2017

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Preconditions, Burdens and Ableism

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading

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Missing, Not Marching

I should be marching right now. I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? … Continue reading

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Help My Sign!

I am suuuppppperrrrr excited for the March for Science this Saturday, April 22nd. I am doing everything humanly possible to attend. I’ve got extra rest scheduled this week, and a backup ride the day of the March (in case ride … Continue reading

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The Cut

Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME … Continue reading

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