Category Archives: Commentary

Stick a Fork In It

Posted on September 18, 2012 by Jennie Spotila

After three years of controversy about the purported association between CFS and XMRV, and after two years of waiting for the definitive Lipkin study to be finished (full text of the paper is here), we have our answer. Stick a … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , , , , , | 13 Comments

Winning Contestants

Posted on September 17, 2012 by Jennie Spotila

Two contests, one that you may have heard of and one that you may not, are active right now with CFS related organizations in the running for cash. The Chase Community Giving contest on Facebook features two CFS organizations competing … Continue reading →

Posted in Commentary | Tagged , , , , | Comments Off on Winning Contestants

Tale of Two Letters

Posted on August 22, 2012 by Jennie Spotila

Advocating for an adequate federal response to CFS usually feels like banging your head against a brick wall. Every once in awhile, you knock out a brick but it feels like so much more because you’ve been banging away for … Continue reading →

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

Free Turkeys

Posted on August 7, 2012 by Jennie Spotila

A keystone of successful efforts to combat complex diseases like CFS has been lacking for thirty years: strategic coordination. Other illnesses, including autism and Alzheimer’s, are now benefiting from coordinated federal strategic plans. In the last year, the Department of … Continue reading →

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

Passing of Dr. William Reeves

Posted on August 3, 2012 by Jennie Spotila

Unexpected news came today that Dr. William Reeves passed away last night. Dr. Reeves was head of the CDC’s CFS program from 1992 through 2010, and was a polarizing figure both inside and outside the agency. Others have chronicled the … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 24 Comments

CFSAC Vacancy: One Down

Posted on July 10, 2012 by Jennie Spotila

Within the last week, there has been a change to the CFS Advisory Committee roster. Dr. Jacqueline Rose, who joined the committee on June 13, 2012, is no longer a member of the committee. Dr. Rose was described at the … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , | 5 Comments

CFSAC Takeaways

Posted on June 18, 2012 by Jennie Spotila

I won’t attempt a comprehensive writeup of the recent CFS Advisory Committee meeting. This meeting was one of the most thoroughly covered: on Twitter (#CFSAC), real-time reports from Phoenix Rising, and a writeup by Tina Tidmore. Instead, I offer comments … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 9 Comments

Be Aware

Posted on May 12, 2012 by Jennie Spotila

Today is ME/CFS Awareness Day. Why May 12th? It is the birthday of Florence Nightingale, who became bedridden with an illness resembling ME/CFS after the Crimean War. From 1860 to her death in 1910, Nightingale continued to work for the … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , | Comments Off on Be Aware

Small Claims

Posted on May 8, 2012 by Jennie Spotila

In April, the FDA sent a warning letter to Dr. Jacob Teitelbaum regarding claims made on his website. Dr. Teitelbaum is well-known in the CFS world for several reasons. His book, From Fatigued to Fantastic, is the top-selling book in … Continue reading →

Posted in Commentary | Tagged , , , , , , | 3 Comments

Some Life in Me Yet

Posted on April 8, 2012 by Jennie Spotila

  Being housebound changes a person. These four walls have become the boundaries of my whole world. I rely on books and the internet to remind me that there is more to life than this. My imagination can escape, even … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , | 5 Comments