Tag Archives: psychosocial

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 →

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

IOM: Report Card

Posted on February 10, 2015 by Jennie Spotila

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , | 61 Comments

IOM: The Big Day

Posted on February 6, 2015 by Jennie Spotila

On February 10th, the Institute of Medicine committee will release its report Beyond ME/CFS: Redefining an Illness. The release event will be webcast at 11am Eastern. The report contents are under embargo until the release, although rumors are flying about … Continue reading →

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

Guest Post: Slightly Snarky

Posted on February 2, 2015 by Jennie Spotila

Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them. We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 5 Comments

The Oxford Problem

Posted on December 8, 2014 by Jennie Spotila

Today, I’m very pleased to share this guest post by Chris Heppner. I loved Oxford when there as undergraduate (1951-4)–truly a city of dreaming spires, peaceful libraries, walks in the country to a lovely old pub by a waterfall with … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , , , , , | 10 Comments

P2P Agenda: What the Huh?

Posted on October 31, 2014 by Jennie Spotila

Less than six weeks from the NIH P2P Workshop on ME/CFS, and we now have an agenda with speakers and talk titles.  So is it good or bad? I reached out to the six ME/CFS members of the Working Groups … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 49 Comments

Illness Beliefs (or Why I Am Not an ME/CFS Activist)

Posted on October 21, 2014 by Jennie Spotila

Today, Joe Landson shares his thoughts on how the false illness beliefs (or even cognitive bias) among scientists is holding our field back. Joe says it is time to tear down the walls and think horizontally – to the horizon, … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 9 Comments

Draft Systematic Review is UP

Posted on September 22, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

Reading Tea Leaves

Posted on March 24, 2014 by Jennie Spotila

In a report issued on March 12, the IOM panel tasked with creating a new case definition for Gulf War Illness declined to do so. This is the first time the IOM was attempting to create a disease case definition, … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 4 Comments