Author Archives: Jennie Spotila

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

Comments on P2P Systematic Evidence Review

Posted on October 18, 2014 by Jennie Spotila

After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you … Continue reading →

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Evidence Review Comments Preview

Posted on October 15, 2014 by Jennie Spotila

This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , | 24 Comments

They Know What They’re Doing (Not)

Posted on October 6, 2014 by Jennie Spotila

This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock.   Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading →

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A Review of the P2P Systematic Review

Posted on September 29, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS was published online last week. It’s a monster – 416 pages in total. I know many ME/CFS patients may not be able to read this report, so in … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , | 44 Comments

Mary Dimmock: Fight the Power

Posted on September 25, 2014 by Jennie Spotila

The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next. Some have called for us to oppose P2P … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | 42 Comments

NIH Says No, and Also No

Posted on September 23, 2014 by Jennie Spotila

With no announcement or fanfare, the CFS Advisory Committee has posted a response from HHS to the June 2014 recommendations. My information is that  – inexplicably – even CFSAC members were not notified when the response was posted. I urge … 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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P2P Participation, Part 2

Posted on September 18, 2014 by Jennie Spotila

I have new information on participation in the Pathways to Prevention ME/CFS Workshop: The Office of Disease Prevention confirmed via telephone that the public will be able to participate in discussion at the P2P Workshop, in person and online. ODP … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , | 14 Comments