Tag Archives: suffering

Protesting Per Fink

#MEAction New York is holding a protest at Columbia University on Saturday, October 20, 2018 against the misinformation about ME that Dr. Per Fink is spreading to New York medical providers at the 4th Columbia Psychosomatics Conference. Who is Per … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , | 27 Comments

“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

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 44 Comments

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

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , | 6 Comments

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

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 22 Comments

After The Afflicted Freak Show

Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , | 18 Comments

How To Represent

Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 13 Comments

Talk To FDA About Chronic Pain

The FDA wants to hear from people with chronic pain, and is hosting a meeting on July 9, 2018 to collect public input. I have chronic pain, and I know that many of you do as well. This meeting is … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 5 Comments

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

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , | 18 Comments

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

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 23 Comments

All The Time and None At All

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 58 Comments