Tag Archives: psychosocial

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 →

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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 →

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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 →

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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 →

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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 →

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Changing Tactics

Posted on March 24, 2014 by Jennie Spotila

For decades, ME/CFS research and clinical care has been plagued by disagreement over the basic classification of the illness. Is ME/CFS a physical disease, as many patients and researchers insist? Or is it a mental health disorder perpetuated by deconditioning, … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 33 Comments

Vincent Departs

Posted on April 19, 2013 by Jennie Spotila

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may … Continue reading →

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Ring Theory

Posted on April 13, 2013 by Jennie Spotila

We’ve all had the experience of someone saying the wrong thing to us about our disease. “I hate that you always cancel at the last minute.” “You rest all day. Can’t you make dinner once in awhile?” “Work is killing … Continue reading →

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