Author Archives: Jennie Spotila

Best In Show Blog

Posted on July 17, 2017 by Jennie Spotila

I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards! Now we enter the part of the process where you can influence the … Continue reading →

Posted in Occupying | Tagged , , , , , , | 15 Comments

NIH Attitudes Affect Policy: A Story In Two Parts

Posted on June 27, 2017 by Jennie Spotila

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 45 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , | 21 Comments

CFSAC: Second Verse, Same as the First

Posted on June 19, 2017 by Jennie Spotila

Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 19 Comments

Guest Post: Sickaversary

Posted on June 1, 2017 by Jennie Spotila

My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 6 Comments

PACE-Gate: Continue Tuller’s Work

Posted on May 28, 2017 by Jennie Spotila

Journalist David Tuller is well-known to the ME community. His series Trial By Error on Virology blog launched PACE-Gate into the scientific mainstream. Since that series began, Tuller has also written about the devastating effects of PACE-style “treatments,” garnered support … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , | 10 Comments

Book Review: Through the Shadowlands

Posted on May 23, 2017 by Jennie Spotila

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , | 7 Comments

Book Review: Growing Gills

Posted on May 15, 2017 by Jennie Spotila

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , | 12 Comments

#MillionsMissing 2017

Posted on May 12, 2017 by Jennie Spotila
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Preconditions, Burdens and Ableism

Posted on May 10, 2017 by Jennie Spotila

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , | 18 Comments