Tag Archives: suffering

Always Another Chance

Toni Bernhard has published a new book, How To Be Sick: Your Pocket Companion. Whether you have read Toni’s other books or not, I think you will find this one to be the perfect fit. This book is not a … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , | 4 Comments

How To Stay At Home

One thing I have learned during the COVID-19 pandemic is that people with chronic illness have a lot to teach healthy people. We have the skills and hard-earned experience of coping with social isolation and restrictions on what we want … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , , , , | 2 Comments

How You Doin’?

How are you in these quaran-times, my friends? My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , , , | 5 Comments

A New Year (With Cake)

In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What … Continue reading

Posted in Occupying | Tagged , , , , , , | 17 Comments

NIH Funding for ME in 2019: The Details

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , | 12 Comments

I’ll Make It Simple

Dr. Jose Montoya has been fired from Stanford University after an investigation into alleged violations of Stanford’s rules of conduct, including sexual harassment, misconduct and assault. The Stanford Daily published an anonymous statement from a group of people affected by … Continue reading

Posted in Commentary | Tagged , , , , , , , , , | 63 Comments

#MillionsMissing 2019

We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 16 Comments

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