Tag Archives: suffering

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

Broken

Posted on January 22, 2015 by Jennie Spotila

My mother died last night. She was a very private person, which is why I have not spoken publicly about what my family has been through in the last two years. I was thinking to write about her now, because … Continue reading →

Posted in Occupying | Tagged , | 52 Comments

CFSAC SNAFU

Posted on November 19, 2014 by Jennie Spotila

We’ve known about the CFS Advisory Committee meeting on December 3rd and 4th for awhile, but yesterday the details came out about the agenda and public comment. Judging from the advocates I’ve talked to, it’s not going over well. If … Continue reading →

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

Why You Should P2P

Posted on September 8, 2014 by Jennie Spotila

My concerns about the NIH’s Pathways to Prevention Workshop on ME/CFS are legion, and I’ve been quite vocal about them. But today I am asking you to participate in the P2P Workshop on December 9-10, 2014. Registration for attending in … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 35 Comments

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

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

Demonstration Planned

Posted on April 5, 2014 by Jennie Spotila

May 12th – ME/CFS Awareness Day – is just over a month away. Plans for a demonstration are underway, via Erica Verillo. Erica is organizing a May 12th demonstration at HHS in San Francisco from noon-1 PM in front of … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 7 Comments

Viral

Posted on February 28, 2014 by Jennie Spotila

I had it all under control. After coming down with a virus (mild flu?) in January, I got the message and seriously scaled back my activity. Joe Landson, Denise Lopez-Majano, and Claudia Goodell all came through for me in a … Continue reading →

Posted in Occupying | Tagged , , , , , , | 20 Comments

Guest Post: Wind Up Clock

Posted on February 24, 2014 by Jennie Spotila

The final post in this stretch of guest authors comes from Claudia Goodell. Claudia is among the most proactive ME/CFS patients I know, trying to make a new life for herself with this disease while also participating in advocacy. I … Continue reading →

Posted in Commentary | Tagged , , , , , , , , | 11 Comments

Guest Post: Frustration

Posted on February 17, 2014 by Jennie Spotila

I continue to struggle with the crash from hell, but Denise Lopez-Majano has graciously provided a guest post. Her thoughts on ME-frustration are right on target for me this week! As a caregiver for her two adult sons, Denise is … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 29 Comments