Category Archives: Advocacy

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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The Burial of ME

Posted on May 8, 2015 by Jennie Spotila

Mary Dimmock has published an extraordinary review of the last thirty years of ME history. With her permission, I’ve reported her announcement with the link to the full document below. I highly recommend reading as much of this document as … Continue reading →

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Awareness Reboot

Posted on May 5, 2015 by Jennie Spotila

Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need. The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has … Continue reading →

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CFSAC Goings and Comings

Posted on April 27, 2015 by Jennie Spotila

There are a number of CFS Advisory Committee tidbits to share, with more goings than comings. Barbara James, the CFSAC Designated Federal Officer, is retiring from HHS at the end of April. No word on who will replace her. It’s … Continue reading →

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P2P Missteps Continue

Posted on April 20, 2015 by Jennie Spotila

There are new developments in the continuing saga that is the NIH’s Office of Disease Prevention’s mismanagement of public comment on the P2P report. When I last wrote about this on April 3rd, ODP had acknowledged that yes indeed, they … Continue reading →

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P2P Mistrial

Posted on April 3, 2015 by Jennie Spotila

Yesterday, the following notice appeared on the P2P ME/CFS website in a red box: Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to … Continue reading →

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