Tag Archives: living with

IOM: Sum of the Whole Matter

Posted on May 10, 2014 by Jennie Spotila

The IOM panel on ME/CFS held its second (and likely final) public meeting on May 5, 2014. On display near the meeting room was this painting by Robert Van Vranken: Untitled (Everything at once, or one thing at a time?). … Continue reading →

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

Comment on FDA Draft Guidance

Posted on April 29, 2014 by Jennie Spotila

I submitted the following comments to FDA on its Draft Guidance to Industry on ME/CFS Drug Development. Please note that there is a 5,000 character limit on electronic comments submitted through regulations.gov, so I sent my comments in by mail. … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 4 Comments

Infused

Posted on March 19, 2014 by Jennie Spotila

I’m beginning a new experiment: IV saline. Regular saline infusions have been used by many ME/CFS patients to cope with orthostatic intolerance for years, but I’ve never taken them regularly. Yesterday, I received the first of four weekly treatments. How … Continue reading →

Posted in Occupying | Tagged , , , , | 18 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

The Finger

Posted on February 3, 2014 by Jennie Spotila

Last week, my body gave me the finger. I can’t even say I didn’t deserve it. After more than 19 years, I still don’t always listen to my body and this makes her very, very angry with me. I’ve previously … Continue reading →

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

There Is No Spoon

Posted on January 2, 2014 by Jennie Spotila

After I read How To Wake Up last summer, Toni Bernhard was kind enough to answer some of my questions about the book and the Buddhist practices she suggests. You can read the full text of our conversation here. This … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , | 30 Comments

Giving Thanks

Posted on November 30, 2013 by Jennie Spotila

November has become a gratitude month in the US, with Thanksgiving happening this week. Last year, I posted a list of ME/CFS related things I was grateful for, and I think it might be a healthy tradition to maintain. I … Continue reading →

Posted in Occupying | Tagged , , , , , , | 8 Comments

WEGO Best in Show Nomination

Posted on November 20, 2013 by Jennie Spotila

I am honored to have been nominated for a WEGO Health Activist award in the Best in Show: Blog category! You can see my profile page, and endorse the nomination if you are so inclined, here. To create my profile … Continue reading →

Posted in Occupying | Tagged , , , | 17 Comments