Category Archives: Occupying

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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“It is no bad thing to celebrate a simple life.”

It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable. And this year, I hardly noticed. … Continue reading

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How To Be Sick . . . Again!

Toni Bernhard has just published a second edition of her classic How To Be Sick, or as I like to call it: The Book That Will Make You A Better Human. I have relied on How To Be Sick since … Continue reading

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Taking Care of Your Self

Self-care is one of those internet buzzwords that people casually throw around, as if a coloring book or a kitty will solve all your problems. I’m not knocking coloring books and kitties, but generally I think that kind of advice … Continue reading

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In Healthcare, Be Squeaky

As the saying goes, the squeaky wheel gets the grease. This is particularly true in healthcare, where you are dealing with big systems that don’t always talk to each other. Today, I will tell you the story of how I … Continue reading

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The NIH Pilot Program: What We Can Do

As I discussed in Part One of the NIH Pilot Program, NIH thinks that the three (and only three) Collaborative Research Centers are seeds to generate interest in ME research, and will wait for more research applications to come in … Continue reading

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One Dance: Millions Missing 2018

I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading

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“Take Care Of Each Other”

“Take care of each other.” Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a … Continue reading

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Expectations

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading

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Personal Positives

Ah, 2017. You pretty much sucked. I managed to come up with a few good things to be grateful for at Thanksgiving, but overall you were a trash fire. Actually, a friend of mine said that my year escalated from … Continue reading

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