Tag Archives: occupy

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

Don’t Silence Yourself

Posted on April 8, 2014 by Jennie Spotila

On May 5th, the IOM panel creating new diagnostic criteria for ME/CFS will hold its second public meeting. The only way you can provide input is by submitting written comments, unless you are an invited speaker. I’m here to plead … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , | 62 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 →

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Congress: We Need An RFA

Posted on April 2, 2014 by Jennie Spotila

I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH. And there is something YOU can do to help! Representative Zoe Lofgren (D-CA) and 10 … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 35 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

Exit Stage Right

Posted on March 13, 2014 by Jennie Spotila

Another CFS Advisory Committee member has resigned. After the March 11, 2014 CFSAC meeting, I emailed the Office of Women’s Health and asked for a list of who had attended the meeting. I tried to keep track of the roll … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 19 Comments

Silver Platter of Frustration

Posted on March 12, 2014 by Jennie Spotila

Yesterday’s CFS Advisory Committee meeting was insane. Wait, maybe the meeting just drove me insane. Or was the whole thing just insanely inane? I don’t even know anymore. Wait a second, hang on. Ok, let me start again. Yesterday’s CFS … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , | 14 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