Tag Archives: speaking out

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 →

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

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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New Life

Posted on August 15, 2012 by Jennie Spotila

I always wanted kids. When my husband and I got married, we thought three kids sounded like a good plan. Even though I got sick two months after we met, and was still sick when we married less than two … Continue reading →

Posted in Occupying | Tagged , , , , | 15 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

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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2011 NIH Spending on CFS Studies

Posted on July 16, 2012 by Jennie Spotila

At the June 2012 CFS Advisory Committee meeting, Dr. Susan Maier from the NIH Office of Research on Women’s Health reported that NIH funding of CFS research in 2011 totaled $6.3 million. In the past, advocates have questioned whether studies … Continue reading →

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

Joint Request for Action

Posted on June 22, 2012 by Jennie Spotila

I joined in this effort by advocacy groups and individuals to secure a meaningful response to CFS from the Department of Health and Human Services. This letter was sent to Secretary Sibelius and others on June 5th. The coalition of … Continue reading →

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CFSAC Testimony of Matthew Lazell-Fairman

Posted on June 21, 2012 by Jennie Spotila

Matthew Lazell-Fairman delivered these comments to the CFS Advisory Committee at its June 14, 2012 meeting. He has kindly given me permission to publish them here. To those responsible for health policy on ME/CFS, I need you to listen and … Continue reading →

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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