Tag Archives: living with

This Year

Posted on January 1, 2015 by Jennie Spotila

I’m not one for New Year’s resolutions. You make a plan or you don’t. You execute it or you don’t. Shit happens, and all you can really control is how you respond. But this New Year’s wish from Neil Gaiman … Continue reading →

Posted in Occupying | Tagged , | 5 Comments

Laura Hillenbrand is Not Your Bitch*

Posted on December 22, 2014 by Jennie Spotila

Laura Hillenbrand is a New York Times best selling author, and one of the most prominent public figures to speak out about having ME/CFS. She has donated hundreds of thousands of dollars to ME/CFS research, has discussed her struggles with … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 34 Comments

A Big Helping of Defamation

Posted on November 26, 2014 by Jennie Spotila

I’m going public with an incident that exposes the dirty underbelly of the ME/CFS community. It’s not the first time I’ve been personally targeted, and surely won’t be the last. But bullying and defamation directed at me, or any other … Continue reading →

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

Delay

Posted on November 3, 2014 by Jennie Spotila

I have been laid low by an infection, and now by the antibiotics I’m taking to treat the infection. So it will be a few days before I post the next few entries on P2P – but stay tuned because … Continue reading →

Posted in Occupying | Tagged , , , | 1 Comment

Limited Capacity

Posted on August 13, 2014 by Jennie Spotila

Life with ME/CFS is all about limits. Physical. Mental. Emotional. It’s like living in a glass box that remains far too small, no matter how much you practice acceptance or positive thinking. And the torture of it is that since … Continue reading →

Posted in Occupying | Tagged , , , , | 25 Comments

IV Saline: Magic Juice

Posted on July 28, 2014 by Jennie Spotila

Back in March, I started an experiment with IV saline. Four months in, I have learned a lot about how and when the treatment helps me. IV saline has been used to treat orthostatic intolerance for many years*, and some … Continue reading →

Posted in Occupying | Tagged , , , , | 9 Comments

ME/CFS Mortality

Posted on July 7, 2014 by Jennie Spotila

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 23 Comments

Guest Post: Longtime Patient, New Advocate

Posted on June 30, 2014 by Jennie Spotila

I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep … Continue reading →

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

Guest Post: CFSAC Comments of Charmian Proskauer

Posted on June 17, 2014 by Jennie Spotila

Charmian delivered these comments at today’s CFS Advisory Committee meeting. She has kindly given me permission to publish them here in their entirety. My name is Charmian Proskauer, and I currently serve as President of the Massachusetts CFIDS/ME & FM … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 1 Comment

On It or In It?

Posted on May 12, 2014 by Jennie Spotila

I’ve been spending a lot of time in bed, recently. This is unusual for me. Usually, I’m ON the bed but not IN the bed. I see a really big distinction. On a normal day, I’m out of bed in … Continue reading →

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