Author Archives: Jennie Spotila

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 →

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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

Spontaneity

Posted on August 2, 2012 by Jennie Spotila

I’ve always been a planner, and living with CFS wreaks havoc on plans. I never know if I’ll be able to follow through on plans, big or small. I missed my cousin’s high school graduation, and at least three weddings … Continue reading →

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NIH Funding and the XMRV Effect

Posted on July 31, 2012 by Jennie Spotila

The largest pool of money available for investigator-initiated CFS research grants is the NIH. Although miniscule relative to other areas of research, $6 million a year is the largest annual research investment in CFS from any source. Given the significance … 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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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 →

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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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