Tag Archives: government

Meeting This Week

Posted on October 1, 2012 by Jennie Spotila

UPDATE: You can watch the meeting via webcast OR you can call in to the meeting in listen-only mode at  1-866-761-7202. Passcode: 3117619.   The CFS Advisory Committee will meet on Wednesday and Thursday this week. The registration deadline for attendance … Continue reading →

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

Those Lipkin Samples

Posted on September 22, 2012 by Jennie Spotila

You may recall from my post on the Lipkin study that Dr. Lipkin talked about the sample cohort at the press conference on September 18th. Dr. Lipkin said that the samples would be available for other investigators and that applications … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 4 Comments

How Did They Get Here?

Posted on September 21, 2012 by Jennie Spotila

I’ve been following the work of the CFS Advisory Committee closely, and after the latest group of new members were appointed I wondered who had nominated them. I’ve done some research, and the answer might surprise you. Just getting this … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , | 32 Comments

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

The News on XMRV

Posted on September 18, 2012 by Jennie Spotila

I am going to refrain from any comment on the XMRV study results announced today until I have had a chance to read the paper, listen to the press conference, and think about the whole thing for a few hours. … Continue reading →

Posted in Research | Tagged , , , , , , , , , | 3 Comments

Will FDA Step Up?

Posted on September 13, 2012 by Jennie Spotila

The Federal Drug Administration held a conference call today to speak with CFS patients, advocacy groups and other interested parties. This is the first time in the history of this disease that FDA has communicated with the patient community in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 25 Comments

Testimony Tips

Posted on September 11, 2012 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away (October 3 and 4), and sign ups for public comment opened last night. At every CFSAC meeting, the public is given the opportunity to offer comments, but you have … Continue reading →

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Another Day, Another Letter

Posted on August 24, 2012 by Jennie Spotila

Last month, I joined six advocates in sending a letter to Assistant Secretary Howard Koh regarding the recent vacancy on the CFSAC and a proposed change to the committee charter. Yesterday, I received the response below. While there are no … Continue reading →

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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 →

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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