Tag Archives: living with

CFSAC Testimony, Jennie Spotila, August 18, 2015

Posted on August 17, 2015 by Jennie Spotila

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading →

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No CDC Funding for CFS?

Posted on August 4, 2015 by Jennie Spotila

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 225 Comments

Wheelchair – HELP!

Posted on July 6, 2015 by Jennie Spotila

I need a new wheelchair, and I need your help! I have used a manual chair for many years, relying on friends and family to push me around. But the chair gets caught in pavement cracks, has trouble going over … Continue reading →

Posted in Occupying | Tagged , , , , , | 19 Comments

Alone in the Woods

Posted on April 13, 2015 by Jennie Spotila

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading →

Posted in Occupying | Tagged , , , , , | 27 Comments

Grief: Words Fail

Posted on April 8, 2015 by Jennie Spotila

There are a lot of things to say about grief, and I had a much longer post planned for today. But words fail me on this. And as a person whose only outlet is words (as opposed to work, socializing, … Continue reading →

Posted in Occupying | Tagged , , , , | 21 Comments

Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 40 Comments

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