Tag Archives: CDC

Pandemic Low

Posted on January 18, 2022 by Jennie Spotila

I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair … Continue reading →

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The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

Posted on September 16, 2021 by Jennie Spotila

Guest post by Mary Dimmock Please sign this petition to fix the coding problem making Americans with ME/CFS invisible. If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US … Continue reading →

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David Tuller: Crowdfunding for Us All

Posted on April 22, 2021 by Jennie Spotila

I have supported David Tuller’s investigative journalism since he first began his crowdfunding campaigns,* but it has never been more important than right now. I urge you to join me in supporting his current fundraiser not only for yourself, but … Continue reading →

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David Tuller: Making Progress Together

Posted on October 20, 2020 by Jennie Spotila

For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work. Five years ago this month, David … Continue reading →

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Return on Investment II: David Tuller

Posted on April 8, 2019 by Jennie Spotila

Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also … Continue reading →

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Public Comment on Engaging People with ME

Posted on June 20, 2018 by Jennie Spotila

I delivered these comments via telephone today at the CFS Advisory Committee meeting: My name is Jennifer Spotila. I will soon begin my 25th year of living with ME. People with ME know this disease. We have valuable insights and … Continue reading →

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Return on Investment: David Tuller

Posted on April 7, 2018 by Jennie Spotila

When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading →

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CDC Website Update

Posted on September 21, 2017 by Jennie Spotila

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading →

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Those CDC Documents

Posted on August 4, 2017 by Jennie Spotila

Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now … Continue reading →

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CDC Hilarity

Posted on June 22, 2017 by Jennie Spotila

Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake. In my experience, all the agencies meet the statutory requirement of … Continue reading →

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