Tag Archives: IOM

Those CDC Documents

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

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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The Proverbial Olive Branch

In what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to … Continue reading

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Enough Is Enough

After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion … Continue reading

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An Open Letter to Dr. Koroshetz

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke. A plea for sanity, respect and science Dr. Koroshetz, I write to you tonight to personally … Continue reading

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Epic Eye Roll

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading

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CFSAC Testimony, Jennie Spotila, August 18, 2015

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading

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No CDC Funding for CFS?

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading

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The Return of CFSAC

Publicly, the CFS Advisory Committee has been MIA this year. There were some comings and goings, and general silence, but now there is finally movement to report. UPDATE July 28, 2015: The Federal Register notice for the meeting has been … Continue reading

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Brian Vastag to Dr. Francis Collins

Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is … Continue reading

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