Tag Archives: politics

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 →

Posted in Advocacy | Tagged , , , , , , , , , | 20 Comments

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 →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , | 38 Comments

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 →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 14 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , | 30 Comments

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 →

Posted in Advocacy | Tagged , , , , , | 3 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , | 18 Comments

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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This Week in Virology Covers ME/CFS

Posted on March 29, 2015 by Jennie Spotila

You may remember This Week in Virology (TWiV) from their XMRV coverage several years ago. I’ve remained an avid listener of the show, simply because it is such a great ongoing conversation about science. And TWiV has continued its coverage … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , | 23 Comments

Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 40 Comments