Tag Archives: CFSAC

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 →

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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 →

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CFSAC Charter Input

Posted on July 23, 2012 by Jennie Spotila

Today, six advocates and myself joined together to send the following letter to Assistant Secretary for Health Howard Koh regarding the recent vacancy on the CFS Advisory Committee and a proposed change to the Committee’s charter.   Dear Dr. Koh, … Continue reading →

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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 →

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CFSAC Profile: Dr. Lisa Corbin

Posted on July 9, 2012 by Jennie Spotila

The second in a series of profiles of the new members of the CFS Advisory Committee. Four new members were recently appointed to the CFS Advisory Committee.  In previous years, members such as Drs. Jason, Klimas and Snell were well-known … Continue reading →

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The Fine Print

Posted on July 5, 2012 by Jennie Spotila

Earlier this month, I told the CFS Advisory Committee to keep track and keep asking about how DHHS was responding to its recommendations. I discussed four recommendations in detail, including: Regarding your recommendation that HHS engage the expertise of the … Continue reading →

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