Tag Archives: government

Brian Vastag to Dr. Francis Collins

Posted on July 15, 2015 by Jennie Spotila

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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Talk Is Cheap

Posted on July 13, 2015 by Jennie Spotila

In today’s guest post, Denise Lopez-Majano makes the case that the time for talk is over and the time for action is now. For decades, stakeholders have advocated for funding commensurate with the severity of ME/CFS. The government’s response has … Continue reading →

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P2P: Where Next?

Posted on June 29, 2015 by Jennie Spotila

There is one official final step in the P2P process: a federal partners meeting supposed to be held six to eight months after the workshop. But there are other marching orders, too. For us. Federals Only As described on the … Continue reading →

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Showing the Back of Their Heads

Posted on June 22, 2015 by Jennie Spotila

The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading →

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P2P Final Chapter

Posted on June 16, 2015 by Jennie Spotila

The final P2P ME/CFS documents are coming out today. I am severely crashed from family obligations, so in-depth analysis will take me a little longer than normal. But here are quick descriptions of the various articles to get you started: … Continue reading →

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Stuck? Four Months of Almost Nothing

Posted on June 13, 2015 by Jennie Spotila

In this guest post, Dr. Alan Gurwitt argues that it is time for ME/CFS advocacy to move on and move forward. The post first appeared on the website for the Massachusetts CFIDS/ME & FM Association, and is reprinted here with … Continue reading →

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Contradictions And Unanswered Questions

Posted on June 9, 2015 by Jennie Spotila

The P2P process is winding down, with the final report scheduled to be published on June 16th. The public comment saga has not been resolved, and the truth of what happened is buried in typical bureaucratic responses. As I have … Continue reading →

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Running in the Background

Posted on May 29, 2015 by Jennie Spotila

Sometimes, there’s no real news to report because things are running in the background. If you are a Mac user, then you are probably familiar with the beach ball of death. It just spins and spins while you wait for … Continue reading →

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Incompetence is Not Criminal

Posted on May 18, 2015 by Jennie Spotila

There is no disputing the fact that the Office of Disease Prevention botched the public comment process on the P2P report. But according to the Office of the Inspector General, it’s not worth their attention. In April, I asked the … Continue reading →

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Very Very Aware

Posted on May 12, 2015 by Jennie Spotila

May 12th is International ME/CFS Awareness Day, selected because it is Florence Nightingale’s birthday. If you look around blogs and social media today, you’ll probably see a lot of blue ribbons and statements from patients. There’s the May 12th Blog … Continue reading →

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